My Acoustic Neuroma Story
I Need This Like I Need a Hole in My Head
(or – How I Spent My Vestibular Schwannoma)
What follows is a personal account of my dealings with finding out I had a brain tumor, and ultimately surgically resolving the condition known as Acoustic Neuroma or Vestibular Schwannoma. I’ve attempted to write this in as near real time as was possible. In that way, I think you will get more of the raw emotions and reactions to the emerging situation than if I simply had recounted the tale in retrospect. I’ve tried to include some of my medical learnings and the details of some of the procedures, as well as tap into the impact this sort of news has on the life of an otherwise healthy person. In this way, I hope I’m contributing to the body of web based patient accounts of this rare condition. I know during my ordeal, it was helpful for me to read about others’ experiences. If I’ve learned one thing, it’s that everybody’s mileage varies. No one can say that your (or your loved one’s) experience will be like mine. But it is likely our stories will be more similar than different. Minimally, despite the rareness of this malady, if you have it, or love someone who does, know that you are not alone.
This is also a personal catharsis. Somehow, by putting these thoughts and feelings in writing I can get them out of my head. For Harry Potter fans, this journal is like my pensive. A place to store my thoughts that I might clear my mind, and a place that I can revisit them later.
In case you don’t want to read the whole sordid tale, jump to the part that interests you:
It all started about 7 months ago. You see, I have had this annoying ringing in my ear since around last Thanksgiving. It was not one of those things that prompted much action. Especially when all the Internet research you do on tinnitus says that the cause is most often unknown, and by the way, welcome to middle age. Earlier this year, I popped my annual sinus infection and needed to trek to the doctor’s to get my antibiotics. While there, I mentioned the ear thing to her. She thought maybe it was a related infection. She encouraged me to take Sudafed with the antibiotics, and call her if both didn’t clear up in a month or so. My sinuses responded promptly, but the ear continued to ring. Additionally, I was now hearing voices in my head reciting the old joke:
“Doctor! Doctor! There’s a ringing in my ear.”
“Well, don’t answer it.”
<Insert rim shot here>
The noise I could take, but Henny Youngman was getting on my nerves. So I called the doctor back. She referred me to an ear, nose, and throat guy who promptly gave me an appointment a couple of months hence. No big deal. This was nothing urgent. In early June I saw Dr. Mulbury. He was a decidedly jovial older man who may well qualify as the most instantly likable medical professional I’ve ever encountered. He assured me I was just getting older and that I was likely losing my high-frequency hearing as that’s just what happens. The ringing in the one ear was just a nerve aggravation from the dental crown I had installed on the same side, about the same time as the ringing started. These things are normal. He explained the the ringing was similar to “phantom pain” in amputees. The brain is missing the high-frequency nerve signals from the ear, and what I was hearing was just the ambient “noise” created by the inactive brain circuit. My signal to noise ratio was off. He assured me that eventually the brain would adjust and stop treating the “noise” as actual data. As an engineer, this explanation made total sense.
He decided to prove his theory to me by sending me next door for a complete acoustic test. Unfortunately, the test didn’t bear out his hypothesis. My left ear tested completely normal, while only my right (and ringing) ear showed the high-frequency loss. He chided me about messing up his diagnosis. Unilateral loss was much less common without physical trauma. But it wasn’t exactly rare. It was likely that my “younger” ear would age up soon, and the treatment (get used to it, it will go away eventually) remained the same. Still, to be on the safe side, he asked me to undergo an MRI. About 1 in 100,000 people will have a neuroma in the ear which can cause these symptoms. But not to worry, he assured me. This was just a formality and was exceedingly rare. I was just getting older, albeit unevenly.
On Monday, I went in for the MRI. I’ve had several in the past, so it was no big deal. Just a quick nap in a loud tube. The tech said my doctor would get the results in 4-7 days and call me. So it rather surprised me when I received a call from my doctor that same afternoon. He informed me that I was in fact, that lucky 1 of 100,000 with an acoustic neuroma. He assured me that this was benign, and nothing urgent. And this time I chided him about me thwarting his diagnostic predictions. He explained that because this was so rare, I needed to see a different specialist, and that his office would set up an appointment for me. I thanked him and hung up. This didn’t sounds like anything to get excited about.
At this point, it was more of an annoyance. I was looking at more doctors, more tests, and probably still a ringing ear when I was all done. But at home that night, I began to research this acoustic neuroma thing on the web. Annoyed quickly morphed into just plain scared. This thing was a brain tumor. Just that term alone sends fear rippling through your consciousness. I called my girlfriend Kim, and explained what I knew at that point. (A quick aside: “girlfriend” is a term that doesn’t begin to describe the muti-year committed relationship which, based on unfortunate logistics, forces us to live in towns 20 miles apart. But that’s perhaps a different story.) Anyway… she was reassuring and not too concerned on the phone. But I later found out that upon doing her own research, this scared the hell out of her as well.
I spent that evening and most of the next day absorbing every bit of literature I could find. I familiarized myself with the terminology, anatomy, and treatment options. I wrangled a copy of the radiologist’s report from my MRI so I had additional diagnostics on my specific tumor. I’ll tell you, knowledge may be power, but ignorance is way more blissful.
Dr. Mulbury’s office called on Wednesday. They had set up an appointment for me with the uber-specialist, Dr. Wayman, for the next day. That should have come as a relief, but honestly the idea that a specialist would give you a next-day appointment just exacerbated my fears. How serious was this?
By the time Kim and I got to Dr. Wayman’s office I already knew that my tumor was classified as medium sized. It had exited the ear canal and was adjacent to my brain, but was not compressing anything there. It was still small enough that hearing preservation was a possibility. At 46, I was way too young for observation, and probably too young and too healthy to be a good radiosurgery candidate. I was braced for the recommendation of middle fossa (over the ear) or retrosigmoid (behind the ear) surgery.
Dr. Wayman confirmed what I already thought I knew. He added that retrosigmoid surgery was the only practicable surgical approach given the position of my tumor. He also pointed out that I could certainly consider radiosurgery given the tumor’s size, but he had concerns about its long term efficacy and the complications. He emphasized that this was not an urgent matter, but was something I should probably act on before the year’s end. As with most tumor surgeries, smaller is better. He also set up consultations with the neurosurgeon and radiosurgeon so I could more fully explore my options.
I felt comforted that I was credibly informed now. And Dr. Wayman also mitigated many of my fears of surgical complications. As with most things, the patient stories you find on the web tend to lean toward the scary and sensational. Intellectually, this makes sense. People with good and rapid recoveries tend not to bother to write about those experiences. Still, reading the horror stories is pretty disquieting. The other thing I began paying attention to were the dates of people’s surgeries. The level of complications has dropped dramatically since the late 90’s. Surgical techniques, imaging diagnostics, and microsurgical tools have all improved dramatically in the last decade. This is reflected in the statistical data as well as the patient accounts if you do a little digging.
The information is settling in now, and fear is beginning to give way to a feeling of confidence. This is something I can beat. In the land of brain tumors, this is probably the best kind to have. While it is still a 50/50 shot that I’ll lose my hearing in that ear, most of the other surgical implications are likely to completely resolve in the few months following the operation. I can live with that outcome. Still, the implications of possible complications are daunting. I try not to focus on them, but it’s hard to ignore them. I’ve always been active, so the prospect of life-long balance problems seems more life-altering than the hearing loss. Facial paralysis sounds like the sort of thing that could make me even more socially awkward than I already am. It seems odd that I’d settle for one deaf ear as a positive outcome, but that’s where I’m at.
The logistical implications of the surgery also weigh on me. A week in the hospital, 4-6 weeks out of work. I’ve never been though anything this debilitating before. What impact will this have on Kim, her kids, my kids, my parents? This not only messes up my life, but a lot of other people’s as well. Most obstacles in life I’m pretty determined I can tackle on my own. But this one is too big. I will have to lean on others, and that’s not a comfortable realization for me. At this point, Kim is the only other one who knows what’s going on, and she’s been great about it. She’s made it clear that she’ll put everything else on hold to help me through this. I realize that not only do I need her, but (given that I have to go through this at all) I really want to go through this with her. This is something we will do together, and that comforts me a great deal.
We have an appointment with the neurosurgeon on Monday. There’s not much to do until then. I have my kids for the weekend, and I can’t help but wonder how and when I’ll break the news to them. But not yet. I want my ducks in a row first so I can give them definitive information. Besides, school finals are next week, and they do not need this on their minds right now. Still, it feels like I’m keeping secrets. I also haven’t told my parents yet. I’m feeling conflicted about that as well. But they are out of town and I don’t think this is the sort of news to be dropped on them over the phone. Besides, I’m going to see them next weekend, so it seems best to wait until then.
In the mean time, I’m beginning to find that this feels increasingly surreal. Perhaps in part that’s because almost no one else knows. Kim and I talk daily about it, but otherwise my life goes on as normal. No one at work knows, my kids don’t know, my family doesn’t know, my friends don’t know. And somehow this makes it all seem less real. Maybe if I don’t ever tell anyone anything, then this won’t really be happening. But I know it can’t be that way. To counter that, I find I’ll be in the middle of doing something else, and I’ll announce loudly to myself, “I have a brain tumor!” But then it makes me chuckle, because clearly that can’t be true. I feel fine. And this has always been kind of a family joke. Any little pain above the shoulders is usually met with the offhand diagnosis, “Ah, must be a brain tumor.” But it really is there, and it’s no joke. I’m usually very private about these sorts of matters. But honestly, I really feel I need to tell the people around me. I need to make this real.
On a lighter note, I keep thinking that just before they put me under in the O.R. that I’ll tell the doctors, “I’m not worried. It’s not like this is brain surgery.” But that’s probably the oldest neurosurgeon joke on Earth, so maybe I’ll keep it to myself.
We met with Dr. Walter, the neurosurgeon, today. I had pretty well resigned myself to surgery, and I was expecting him to confirm that as the preferred path forward. To my chagrin, he was annoyingly balanced. It turns out he also is heavily involved in radiosurgery treatments and spent time at the University of Pittsburgh, which is one of the national leaders in gamma knife surgery. His assertion was that I was a good candidate for either technique, and that I was likely to get a good outcome from either surgery or radiosurgery.
So suddenly I’m a little less certain how to proceed. The good news is that I have two good choices to pick from, so I really can’t go too wrong. I’m basically choosing between risks and time frames.
He said that radiosurgery would have a slightly higher risk of developing facial nerve problems down the road. He said only about 5% of radiosurgery patients have subsequent tumor growth, and that many of them are treatable with a second round of radiosurgery. He also confirmed that his experience was that surgeries were trickier on previously irradiated tumors, but he didn’t seem to think this was a problem for a skilled surgeon.
On the surgery side, he said there would be very little risk of facial nerve damage and confirmed that hearing preservation was a 50/50 possibility. He saw very low risk of side effects or complications. He confirmed the bone dust mitigation strategies they would use as bone dust is a suspected cause of post-operative chronic headaches. He also confirmed that they would plate my skull with titanium rather than using the insertion of abdominal fat that seems to be common practice. Somehow I feel better knowing my skull would be solid again when he’s done.
But the bottom line is that this is a crap shoot. It’s a matter of personal preference. There is great appeal to the surgery. Get this over and done with. I’ll know almost immediately what issues (if any) that I’ll be stuck with. And after a couple of follow-up MRIs, I can declare myself cured and finished with treatment. But the surgery itself is intimidating, and the recovery is a lot more difficult. Although Dr. Walter did say that most of his brain surgery patients are home in 2-3 days, which sounds a lot better than the 4-6 days which most of the literature talks about. And the “really scary” surgical risks associated with this surgery really aren’t much different than the risks associated with any surgery under general anesthesia. And I’ve had several of those in the past for various orthopedic problems. The risk of surgery never scared me then. I guess it’s really just because they’ll be inside my head.
On the flip side, the actual radiosurgery treatment is almost trivial. It’s an outpatient procedure with virtually no immediate side effects. However, the balance issues, hearing loss, and facial nerve problems can develop slowly over the next 6-12 months. In addition, it isn’t until 1-2 years that you really know whether or not it worked. And even then, it needs to be checked every year for the next 40-plus years with an MRI to be sure everything is still quiet.
In terms of personal preference, I have one doctor on either side of the fence. And each admits this is a personality driven choice. One guy wants things over and done and tidied up, therefore preferring surgery. The other is more of a wait and see person and would rather not be laid up with the surgery in the short term, therefore preferring the radiosurgery.
I guess if I had to put my personality in one of those two camps, I fall pretty clearly on the fix it once and make it right side. That suggests that surgery probably really is the right option. It’s the rational choice for me. But my emotions need some convincing yet. Fortunately this is not a decision I need to rush. But for my own peace of mind, I want to make the decision so I can put this phase of it behind me and move on. I will feel more settled once I know what’s going to happen and when. And as I’m typing that, I realize that I have probably just confirmed that emotionally the surgery is a good fit too. So hopefully I’ll arrive at a comfortable decision in the next couple of days.
Based on my epiphany last night, this morning I felt comfortable and even sure about opting for the open surgery. I told Kim, and then called the doctor’s office to schedule it. I’m going in on August 22nd. This was only one day later than my ideal date. It will still give me most of my summer, and get the ugly stuff out of the way before school starts.
Now starts the process of telling people. First come my parents, followed by my kids and Kim’s kids. They will be the hardest. The trick will be to acknowledge the gravity of the situation without making it sound like a big scary deal. I’m really pretty confident things will come out okay. I may be half-deaf, but I’m really okay with that now. The other long term risks, based on what the doctors have said, seem pretty minimal. But it took me several days to get here, and I don’t expect that those closest to me will make that trip immediately either. But I hope that I can guide them and make it easier for them than it was for me.
I also need to start thinking about telling people at work. Things are getting scheduled for late August and September that I’m a party to, and it’s not fair to them to keep the fact that I won’t be here from them. But I just need 2 more weeks to get the immediate family in the loop, and then I can tell others who will be impacted.
Somehow it all seems more real tonight, and a little less intimidating. It’s on the books, in the pipe, or whatever. I’m ready. I’m gonna be fine. Now I’m just gonna feel bad about messing up everyone else’s life for awhile. But I need to get over that as that attitude really isn’t fair to people who truly love me.
The telling has begun. We told my mom and dad this weekend. Siblings have been informed, and the kids will find out tonight or tomorrow. It does seem more real somehow as additional people find out. But it’s also clear that pretty much no one knows how to react to this news. Hell, I wouldn’t if someone told me. There seems to be a mix of bewilderment, disbelief, concern, sympathy, and a touch of panic. There’s something about the term “brain tumor” that causes an odd reaction in people’s minds. Brain tumors are soap opera problems. They don’t happen to people you know. Everybody pretty much knows half a dozen people who have had multiple bypass surgery or have had cancer. It creates a sense of comfort I think, to be stricken with something people know about. They know what to expect and how to react. The thing is, both cancer and heart surgery are way more life threatening and scary than what I have. I believe the fear invoked by the name brain tumor comes not from the inherent severity, but from the unfamiliarity. Leave it to me to be different.
The kids have been told. My boys initially took it quite well. They were even joking around about it with me. For example, they asked if the metal plate in my head would ring if you thumped it. It was hard trying to find the right balance between impressing on them that this was way more serious than last year’s foot surgery, but at the same time assuring them that everything was going to be okay and they shouldn’t be scared. I think the gravity of the situation began to sink in as the evening wore on though. I brought the topic up again a time or two just to be sure they knew it was okay to talk about it and to assure they didn’t just duck dealing with this. My younger son did ask me if we could just not talk about this right now. It was an emotional reaction, which is pretty normal for him. I know he’s processing this and I need to respect his desire for space. But I’ll also need to go back and make sure he doesn’t overly internalize this.
Kim’s girls took the news with a much more serious tone. Where with my boys I felt I was having to emphasize that this really was serious, with the girls the emphasis needed to be much more on the “I’ll be alright” aspect. They are concerned, but I think they believe it will all be okay. Further, they very maturely assured their mother that she needed to be with me during all this and that she shouldn’t worry about them at all. While I know that Kim won’t let anybody feel ignored during all this, I do think she appreciated their assurances about where her priorities should be. They are a credit to their upbringing. Further, their father and his mother both offered to help with kid logistics to make this easier for us.
On a different note, my ex-wife took the news a little differently. I had written her to explain what was going on. I normally provide all the transportation for my boys going between our houses, but I won’t be able to drive for a few weeks after the surgery. I asked if she would be able to transport the boys the 2 miles back and forth to my house during that time. She called, and without so much as a leading “sorry to hear about your tumor” started right in with the assertion that she should have the boys over the Labor Day weekend since obviously I would be in no shape to entertain them and this was the last weekend of their summer. She went on to explain that while she would try to get the boys to see me, there were going to be a lot of nights where it just wouldn’t be convenient and I needed to be prepared for that. She ended by asking why I couldn’t have scheduled my surgery at a time that was more convenient for her. I’m so glad she’s started attending church. It’s really had such a positive impact on her attitude. I suppose the good news is that I’m unlikely to get a harsher reaction to my impending surgery from anyone else. It’s all upside from here.
Today has been the notifications of people at work. Kim and I both notified our respective groups as well as people we’ve worked with over the years that we’ve stayed in touch with. Our careers have overlapped enough that many of the people know us both. There has been a tremendous outpouring of support and good wishes. Sometimes you feel a bit anonymous working at a big company, but at times like these you feel more like a part of a big extended family. It’s a good feeling.
There has also been a lot of feedback from Kim’s girlfriends, most of whom I barely know. But they have been enormously supportive, and I’m glad they will be there for Kim. I still think this may be harder on her than me.
A couple people have also come forward who have been through this or similar conditions over recent years with various relatives. The stories are generally encouraging and do help to our manage expectations. But despite the offers, I’m not really of a mind to connect directly with these people. I’ve resisted the nudgings to join or create a support group, formal or otherwise. Maybe that’s just my go-it-alone attitude coming through, or my reluctance to join social networks of any kind. But I also find that I don’t really feel any sort of need to have these strangers around, even though we have (or will have) a shared experience. This may be short-sighted on my part. I’m also open to the idea that this may become more important to me if the recovery doesn’t go as smoothly as I’m hoping. I haven’t shut any doors, and certainly leave this open as a possibility. But not me, at least not now.
I find I’m beginning to get anxious. Not in a nervous sort of a way, but more of an impatient way. I want to get on with it. Cut me open, get it out, and let’s get started with the recovery so I can get back to my previously scheduled life already in progress. Then I realize what I’m asking for. One month from today I’ll be just out of ICU (I hope). Probably struggling to puke in that impossibly little tray they give you because anesthesia makes me sicker than a dog. Then I’ll have vertigo to boot. Oh, this should be fun. Maybe I should just shut-up and enjoy the last few weeks of my summer.
It was surgical pre-op testing day today. I found it encouraging that my neurosurgeon was actually in surgery doing the same operation he’ll do on me to someone else today. And apparently there’s another such surgery scheduled in the interim. At least he’ll be well practiced. Hopefully not overconfident and bored with it though. (I really need to stop thinking of these things and leave well enough alone.) In a way, today was refreshing. This is just another routine surgery. The instructions for what to do before and what to expect after sounded very much like when I had shoulder surgery 10 years ago. It’s seeming like it’s no big deal. It was also nice to have a doctor tell me I was “young and healthy”. At 46, this isn’t something I’ve heard lately from any medical professionals. Of course there’s that little brain tumor thing, which might detract from my overall health, but let’s not niggle over the little things.
I’ve also been asked several times lately, “How do you feel?” To which I always say I feel just fine. I do. But that seems a silly answer. I feel fine. But I’m going in so that doctors can make me feel profoundly un-fine for a while. All in hopes that I’ll feel as good as I do now when I’m done. It’s weird to be undergoing major surgery as preventative maintenance. But that’s exactly what’s happening. All the more reason to just get on with it. The next few weeks are going to be awfully long.
Well, the surgery is the day after tomorrow. I go in tonight for my pre-op MRI so they have an up to date picture of what they’re going in after. I’ve been preparing in my own OCD-ish way. The lawn is cut and trimmed, the house is cleaned, I’ve gotten everything at work about as tied up as it can get. Email distribution lists have been prepared so updates on my status can be easily issued to everyone who might care. It’s time.
Speaking of it being time, it’s about time the medical industry was allowed to enter the 21st century with regard to patient information. It seems there must be some theoretical limit as to how many times you could be asked the same question on what is essentially the same form, but I have yet to find it. I would be quite happy if the various doctors, hospitals, and labs could work off of a common database. Failing that, could I just carry my medical history on an encrypted USB drive and submit it that way? If I get handed one more clipboard, I think I will scream. They tell me that when I get to the hospital Wednesday morning that I won’t need a thing and I’m all pre-registered. Right. I’ll believe that when it happens. In the mean time, I’m warming up my vocal chords for a long healthy bellow.
It’s 4:30am. I’ve pretty much given up any notion of getting any real sleep tonight. Besides, we have to be at the hospital at 6am. One last shower, a few parting tender moments with Kim where we continue the mutual reassurance that this is all going to be alright. The anxiety is palpable… and we’re off.
The admission process is smooth and to my great amazement there are no clipboards offered. Just a simple form to sign and then we wait. The pre-op process is typical. I’ve been through this before. Get your fancy backless gown, start your IV drip, endure the endless parade of people who come ask who you are, what your birth date is and what you’re there for. Still, this is a new level of surgery for me. This isn’t a knee or a shoulder, it’s my head, and yes, apparently that does make a difference.
My parents come in to the pre-staging area and along with Kim wish me farewells as I get wheeled to the OR. I’m trying to occupy myself with the room. Trying to figure out how I’ll actually be positioned during the procedure so that the anesthesiologist can get to the front of my head and the surgeons can get to the back. It’s not clear. Maybe I’ll ask. Then the world fades…
Flickering images. I hear someone call out, “He’s awake!” I see Kim’s face. She seemed especially scared I wouldn’t wake up for some reason. I hoped that this calmed her a bit, but I can’t tell. My parents pass by the bed. It feels a bit like a casket viewing from the corpse’s perspective. I don’t really know if I’m actually trying to interact with anyone. My mind seems to be doing things, but that feels oddly disconnected from my body at the moment.
In my mind I flash to a scene from Frank Herbert’s Dune novel where the Baron Harkonnen realizes he was not the one killed. The “floating fat man” circles the room in his hover-suit cackling, “I’m ALIVE!!” Realizing I forgot to pack my hover-suit, I settle for a couple of quick mental laps about the ICU. And the world fades again…
The day is a haze of nurses, interns, residents, and doctors. I keep lapsing in and out. My stomach is churning. I warned everyone who would listen that I don’t tolerate anesthesia, morphine, or pretty much any narcotic substance well. I’m living up to my word. They keep pumping me full of anti-nausea drugs, which seem to just knock me back out. I guess if I’m not conscious, I’m not nauseous. I assume that’s the reasoning anyway. I really don’t care. I wake up, puke on myself, get injected with something, and go back out.
In the wee hours of the night, I come alive and seem to be able to hold a thought or two together without it manifesting itself as some impossibly green substance that would make Linda Blair cringe. Inexplicably, the nurse informs me that now that I’m stable, I’ll be wheeled down for a CAT scan. I can’t possibly be the only one who sees taking a barely not-puking man for a ride on a wheeled bed as a bad plan. But apparently I am mistaken. I do my best and mange to keep things together through the trip. After all, why puke on a bed when you can wait and do it inside a piece of expensive electronic scanning equipment?
It was at this point that I realized that every remaining shred of personal dignity I had was gone. I was content to lay half-naked covered in my own vomit. I felt free to puke with wild abandon on the return trip to the ICU. I also made a mental note to thank everyone who works in hospitals. It’s a job I couldn’t do. They take it all in stride, and still manage to be caring and helpful. If I were them, I’m sure I’d have left me in the hall.
My first “real” day since surgery. That is, a day where I can remember being conscious enough to actually delineate its beginning from its end. I’m still sleeping more than not, but at least I care that the TV is hooked up on the room. I can’t quite focus on it, but the noise somehow lends a sense of normalcy. My stomach is calmer, but the idea of food is still pretty unpalatable. Obviously the universe hates me, which explains why a chirpy fellow just wheeled in a tray of eggs and bacon for breakfast. Even the smell is not tolerable, and one of us needs to go. Fortunately, it was the tray.
I’m finally able to take some stock of myself. I’m hooked to cardiac monitors with IVs in both arms. I’ve got more wires coming out of me than my sons’ science fair projects. But at least I’m able to connect a bit with my family. Kim and Mom have been keeping my boys informed and we’re all feeling a sense of relief that the worst is behind us.
About then, a nice turkey club sandwich comes in for lunch… and goes right back out. The cafeteria staff is trying to kill me. The nurses assure me that I’ve been registered for a “clear diet” and they don’t know why this food keeps showing up, but they’ll call down again
I briefly think about how much easier it would have been to have the radiosurgery. I wouldn’t be suffering any of this at all right now. But I opted for the front-loaded process for a reason. I knew this would be the tough slog. I’m not going to start second guessing my decisions at this juncture.
The afternoon yields some progress. Nurse Steve is determined that it’s time for me to get my lazy ass out of bed. I don’t disagree, but at the moment I feel pinned like Gulliver under the Lilliputian’s snares. Steve begins to disentangle me. The initial steps all seem to involve removing something sticky from someplace hairy. Well, at least it was hairy before Steve started. I reasoned that these are the people who’ve been cleaning me of my own vomit for two days. If they wanted to yank wax strips from my chest just for giggles all afternoon, I was still getting the better end of this deal.
Then Steve informs me that he will remove my catheter. (queue: ominous music)
In fairness, I knew I was going to get one, but it’s the sort of detail you’re pretty comfortable keeping in the far recess of your mind, behind the place where you keep the memories of the insignificant but embarrassing details of your life that are best left forgotten. But suddenly the detail seemed to loom a bit large. He explained the simple procedure, and it wasn’t even any concern about pain. It’s just that things don’t usually go up that particular avenue of my anatomy. The idea just freaked me out.
Steve was gentle, and professional. He removed what felt like a solid 26″ of tubing in one smooth motion. All of which caused me to wonder exactly how many extra inches I had on the inside and was that adjustable? If so, would I need special holster socks afterwards? I settled for the solace that if I was feeling good enough to ponder my penis size, that I was obviously on the mend.
Steve helped me get my shaky frame erect from the bed, and we stood with my hands on his shoulders and him supporting me at the waist. It was such a tender moment that I couldn’t resist asking him for a dance. It was my first audible joke, which everyone took as a good sign.
After returning the dinner meatloaf sight unseen, Kim scored me some Jello from one of the nurses. She fed me a couple spoonfuls, and I was stuffed. This was a new experience. I thought it would just trigger a larger hunger reaction and I’d be interested in eating more. But nope. I was stuffed. The good news is, it stayed down.
Later in the evening I got out of bed with my IV pole and headed to the bathroom. The 10 foot trip was now passing for exercise in my day, but progress is relative. I noticed that moving about and especially tilting my head forward was causing clear fluid to run out of my nose though. I remembered reading that a nasal CSF leak was a possible surgical side effect, so it seemed this warranted some attention. I explained to my family what was going on, and they went to get the nurses.
The resident was called, but had assured them by phone that this wasn’t really a possible implication of the particular surgery I had. Still, nurses were shoving sample cups under my nose to collect specimens. I would have thought there was some simple test to determine if this was really CSF, but apparently none exists. A definitive test takes days in a lab, and that doesn’t help us tonight. It comes down to a duck test. Does it quack like a duck? Waddle like a duck? Apparently it does.
The doctor said he would be up after he got out of surgery, but that could be anytime between now and 4am. Visiting hours are over and my family is scooted out, but assured they will be called if anything develops. Which meant of course that the doctor showed up 30 minutes later. The choice was made to insert a lumbar drain in my back to relieve the CSF pressure. The theory is that if the ambient pressure of the system is reduced, it will give the leak a chance to heal on its own. My surgeon says he’s never had to go back in surgically to repair a CSF leak, but the nurses tell tales of two patients of other surgeons who have had to go back under the knife. At this distance from the first surgery, the prospect of starting over again is frankly terrifying.
I called Kim, who had just gotten home, and told her they would put the drain in. She asked if they would let her return to the floor to be with me, and the nurses verified that was okay. So she drove right back in. She is amazing in so many ways. I never could have brought myself to ask her to come back, but it meant the world to me that she would be there. I was feeling like an emotional train wreck. Which probably gives the wrong visual connotation as I tend not to be the most emotive person you’ve ever met. I pride myself on my strength, my ability to tough out anything. But I was depleted after the last few days. I was facing what was not a very pleasant procedure on its own, in the hopes that it would abate a situation which could lead me to my nightmare scenario. I was scared, and I wanted someone’s hand to hold. Someone to tell me it would be okay whether she believed it herself or not. Someone who cared about me more than I cared about myself. And she was on her way.
The actual puncture and drain insertion didn’t honestly live up to its billing. There’s something about the phrase “we can’t give you anything to numb this” that gets your anxiety up a bit. Not that I’m anxious to have another or would recommend it as a party game, but in the greater scheme of “this is gonna hurt”, well, it wasn’t so bad. Then again, I couldn’t see anything. The nurses were pressing cold compresses on Kim’s forehead while I was having it done, so it obviously didn’t look like a great time from her angle.
So now we wait. 48 hours of draining, then they’ll block the drain and see if the leak has stopped. It’s about 2am now. My back hurts where the drain went in, my brain is buzzing. It’s a long and sleepless night.
It’s Saturday morning. The beginning of a weekend where I had been hanging my hopes that I would be released from the hospital based on expectations just a few days prior. But that hope was gone. Tethered to the relentless drip of CSF into the collection container, I was stuck here until at least Monday. Further, the drip rate was monitored manually by the nursing staff, so there was someone by to check on things every 30 minutes or so. And this was necessary as any change in position on my part altered the drip rate. If I dripped too slow, then the procedure wouldn’t work. And if I dripped too fast, well… that gets your attention in a hurry.
It turns out that a quick pressure drop in CSF creates the most, ummm… unique of sensations. Let’s be clear, we’re talking pain here. Pain in your head. But not the sort of generalized pain of a headache or anything else I had experienced. It rather felt as if your fore brain suddenly enraged at the insult and was attempting to burst straight through your forehead so that it could come out, look you in the eyes, and scream, “Are you freaking kidding me!!!??” So while the steady parade of nurses made any hopes of sleep pretty remote, I was grateful for their vigilance.
My stomach is steady, but not yet ready. I’m able to get a few spoonfuls of Jello down now and again, but the smell of the full course food trays they keep rolling into the room is not tolerable. Hell, I can’t even watch the Food Channel yet. I’m content to be patient, but also aware that I’m up to four days without food now, and that can’t continue much longer.
My Ex (under her terms and conditions) has agreed to bring my boys to see me today, and I’m really looking forward to that. I want for them to see that I’m okay, and this is really good motivation for me to get up and try and get cleaned up a bit and maybe show some energy. Besides, even I’m aware that I stink right now. With help I take my IV/Drain pole with me to the bathroom and manage to drag a soapy washcloth across the essentials. I can’t help but notice that I’ve accumulated well over a week’s beard growth in just a few days. That surprises me, but I manage to do a half-assed job of shaving, which at least creates the illusion of my humanity. I’m also becoming more aware of the extent of the facial palsy I’m experiencing on the one side. It’s rather like that post-dental work feeling where half your face no longer seems to animate properly. Only you lack that tingly thawing sensation. It just feels dead. Still, the doctors warned me of this, and seem very convinced that facial function will return to normal once all the swelling goes down. It doesn’t really concern me at this point, it’s just a damned odd feeling.
My boys arrive, and I muster up all the energy I can. They seem relieved a bit so maybe I don’t look as bad as they might have imagined. They check out my slick new racing stripe behind my ear. It’s a nice s-curve of stitches deep into the hairline. As short as my hair started and as fast as it’s growing, it will disappear into the underbrush in just a couple weeks. The boys proceed to check out every medical device in the room and ask lots and lots of questions about them. This is what they do, it’s who they are, and it all feels as it should.
After they leave though, I’m exhausted to the point of collapse. I’m not sure where the line between falling asleep and passing out is, but I think I was over it. And having been awake for the last 30 hours straight, I was grateful for anything. I was conscious again for the evening and visited with Kim and my parents. I was hoping that since my back had stopped throbbing that maybe I would actually find some real sleep through the night. But that was not forthcoming. I was now deep into a brain-buzz. Closing my eyes resulted in startling visualizations of 3D landscapes. I was having an almost persistent out-of body experience. I could float and reorient my whole self in 3-space about the room. Aspects of this were very cool. It was creative and liberating in many regards. But it was not restful.
The sun comes up and the residents go round and round. Because I had two surgeons working on me, they each have their respective possy of residents that come round to see me every day. They ask basically the same questions, many of them scribble in notebooks. It’s honestly kind of cute. I feel a bit like a show & tell exhibit. The downside is, I ask questions back. The answers I get are all over the map. I’m not concerned about this. I know they are students. Some have only been doctors for a matter of weeks. I also recognize that medicine is not the exact science we’d like it to be. So I can enjoy watching some take questions away to “review them with the team” while others opine with confidence despite being delightfully under informed. I can’t help but hold out more hope for the former group. The only things I take to the bank are the things my two surgeons say themselves.
The good news today is that I’m beginning to feel hungry. I’m actually anxious for the breakfast tray to arrive. Although I admit to a bit of disappointment that they finally got the clear liquid diet restriction working, it was probably a safe place to start. You probably won’t find the broth and Jello breakfast on the menu at Denny’s, but at least it stayed where it was supposed to afterwards.
Oh, and the big news… I pooped! Now I didn’t realize this was big news until after the event. But several of the nurses asked about it. One with disturbing detail with regard to shape and consistency. (It honestly didn’t occur to me to save the specimen.) In the last 24 hours I’ve regressed four and a half decades into some nouveau infant state where women ogle over my ability to walk and poop. If this is the Circle of Life, I want off the roundabout now!
My boys come visit again today and my family is there all day. I’m awake for more of the day today, and I’m becoming more aware of what I can and cannot hear. I still have no discernible hearing in the surgical ear. However, the roaring of the tinnitus is at an all time high. The other side also feels kind of clogged. Not in a damaged way, but more that kind of fuzzy sinus cold cloudy hearing. The combinatorial effect is that listening is a lot of work. I really need to focus on who’s speaking, and multiple conversations or background noise are quickly reduced in my brain to pointless scrannel. I’m assuming this will clear up, but it is a little disconcerting.
Speaking of disconcerting, the evening brings an offer from Kim to try and wash my gross head of hair. Not only is it five days ripe, but there are still chunks of “stuff:” in places and it would feel great to get some of that gunk gone. She obviously loves me. I’m not allowed in a shower yet, but she manages to use a bucket and washcloth to great effect. I feel a bit like the object of a Jane Goodall documentary as my parents watch her pick and groom her way through the chunky stuff. But suddenly she stops.
“Honey, these are staples.”
“Excuse me? Staples?” I reach up and feel what she’s talking about. She’s right. under the gunk in three places are staples which are still embedded in my head. Not firmly mind you. They wiggle and are nearly out, but removing them that last little bit is not a matter of tugging hair, but scalp. Is this normal? Am I suddenly simply a sloppy carpet installation? The nurses are summoned, and while surprised, they assure us these things do happen. (I can’t help but wonder if you could surprise a seasoned nurse with anything.) They say they’ll note it on the chart, and the doctor will check it out during rounds.
Later that evening after everyone has left, I pick through my hair to isolate the staples and pluck them each out by myself – five in total. No pain, no big deal, but very disconcerting. Not to mention, I really wonder what was actually stapled to my head during the surgery. But I recognize that this question may be better left rhetorical.
The night doesn’t bring much sleep again. I’m exhausted, but my brain is way too wired to sleep. It doesn’t help that my night nurse is not having a good shift. She only brought a half-dose of my oral meds tonight which she corrected when I questioned it. She’s having a heck of a time keeping a steady flow rate on my lumbar drain, and when trying to flush my IV line she squirted me in the head with a syringe full of saline. Nothing dangerous to be sure. She’s just off her game tonight. It’s tempting to try and blame my lack of sleep on her, but that wouldn’t be fair. If nothing else, it’s causing me to be more and more aware of the treatments and medications I’m being given. Which causes me to focus on the steroids they have me on. They have me on some fairly aggressive steroids to reduce the post-surgical inflammation. That makes sense to me. But what I hadn’t put together before was that the stupidly rapid hair growth, some of the sour stomach, and more importantly, the agitation and sleeplessness were side effects.
For all intents and purposes, I had been many days now without food or sleep. I had been growing concerned that the visualizations and waking dreams were somehow related to the surgery. That my general feeling of malaise was a post-surgical side effect. But I think I’m wrong. I think more of this has to do with sleep and food deprivation resulting from the steroid medication. I’m having Noriega flashbacks. I remember thinking at the time that sleep deprivation seemed an unlikely way to get someone to surrender. But at this point, I’d gladly throw in the towel for a normal night’s sleep. While I don’t pretend to relate to the psychological trauma of torture, I can attest to the efficacy of some of the physical forms of “legal torture”, and it’s given me a new perspective on that topic.
Monday brings a day of waiting. Basically I’m just draining out one end and while trying not to leak out of the other. Food is appealing again, although the taste is all wrong. This is a facial nerve thing and is related to the palsy I’m still experiencing. But it doesn’t aid my body’s need for food when nothing tastes good. But at least it smells good now.
I spend some time in the morning probing with the residents some more. I’m increasingly curious how I was positioned during the surgery to allow access to both sides of my head at once. Apparently I was on my side with my head in some sort of clamp. That explains the bruise on my cheek, but not really the staples. But maybe that’s best left unexplained at this point. I also got clarification that the biopsy results were negative and that all other aspects of the surgery seem to have gone right on spec. That’s comforting.
I’m allowed and encouraged to get up and walk every couple of hours today. That’s most welcome. I take my trusty pole and head out to the loop around the nurse’s station. It’s kind of like geezer NASCAR. Shuffle fast – turn left. I lapped an old guy in a walker, but resisted the urge to trash-talk him. It’s interesting as most of the patients here are sporting odd haircuts. Different places where we’re each been shaved for our respective operations. I definitely prefer my over the ear racing stripe to one lady’s reverse Mohawk. Maybe my lot’s not so bad after all.
Moving is decidedly odd. I really feel as if I’m just a wee bit too drunk to drive. Physically. Mentally I’m on game, but physically I’m drunk. This is a new juxtaposition. Still, every time I get up, it gets easier and I get steadier. But I have to think about it. Balancing as I walk is not natural anymore. I’m using the same mental concentration you use when you’re trying to convince the world you’re not stumbling drunk after the party. But this doesn’t go away by morning. On the plus side, there’s no hangover either.
I’m coherent enough today that reading email wishes, texting Kim , even making a couple brief phone calls seems comforting and normal. That evening I start a book that a friend brought me earlier in the day. It’s a great sort of fun mindless read, but the act itself is comforting. Just yesterday I couldn’t get my eyes to focus enough to watch TV. Today I can read. That’s a good sign. I’m still sapped of any useful strength, but at least I’m no longer sapped of my sense of self.
It’s time to block the lumbar drain and see if my nose leaks. If all goes well, I could maybe get home today. The doctor stops the flow and we wait. Unfortunately, not for very long. While my nose is dry, the drain itself is leaking around where the tube is inserted in my back. They decide they can cinch it up with a single suture, but of course, they can’t give me anything to numb that either. I’m honestly not even fazed. I’ve been stuck and prodded so often in the last few days that the idea of someone sewing on my raw hide barely registers as annoying. They stitch it up and all seems dry. So now we wait again. They also dash my hopes of getting out until at least tomorrow as they now need to monitor both leak sites for 24 hours.
The good news is that I’m less constrained by position now, so I can get up and walk more. I’m still physically tethered to the pole, but it’s ornamental at this point. It’s my medical bling. See it shine in the fluorescent light?? Maybe Dad could smuggle me in some Turtle Wax and we’ll get this baby looking good. My boys visit again and seem encouraged by my progress. We decide the pole needs a name. “Bob” is the first suggestion as that is universal name for coveted but useless things at my house. But the coveted part troubles me. I’d really like to shed this baby, so my younger son opts for “Meddy”. That’s certainly a name and an object I won’t miss.
I’ve been looking forward to laying flat on the bed tonight. Since the drain is blocked, I’m allowed. Maybe it will help me sleep. So around 11pm I crawl in and find the most comfortable position I’ve been in in many days. It feels great. Excepting one thing. I’m still an effective drunk. A drunk with bed spins. And the logical conclusion of drunken bed spins suddenly manifests itself all over the floor. This is the most embarrassing and depressing thing to happen all day. I feel really bad now that the nurses have to clean up after me. I feel bad that I’m spending the night propped up on my back again. And now to top it off… I just feel bad.
I’m anxiously awaiting the morning cadre of interns. I’m grilling every last one for when I can get this drain out of my back. I’m still dry at both ends. We should be done. Right? Please? Finally I get the word that they’ll remove the drain. They’ll then need to monitor that for a few hours to be sure it’s dry, but I could be home by early afternoon.
The removal goes smooth, and earns me a couple of more fresh unnumbed stitches into my back. But it hardly matters at this point. I’ve been here 8 days now. There’s little I wouldn’t endure if it got me home.
I’m excited to finally be free of Meddy, but I’m told I have to lie down and be still for the first couple of hours. Two hours later, everything is going clean and dry. And once I’m sprung from bed, it’s back to the NASCAR track for a few untethered laps. I’m getting anxious now. They’ve promised me discharge papers. I’m fighting the urge to just dog the nurses so I know the second I’m free.
The papers arrive just after lunch, and I get wheeled out for the trip home. The world is a shakier place than I recall. Focusing at distance is difficult. Sudden motions are disconcerting. And walking a straight line is still an effort. But I’m going home.
At home, the thing I want most is a shower. I’m not supposed to linger, but as tempting as it is, my drunken stance makes it hard anyway. I’d just settle for clean. Exiting the shower I can’t help but notice that it looks like Sasquatch was just washed in there. I’ve become some sort of great molting bear. I’ve got to get off of these steroids. My plumbing is not prepared for this.
Downstairs, Mom has brought some homemade split pea soup for me. It’s warm, it tastes like it’s supposed to. It’s like love in a bowl. I’ve never enjoyed soup so much. And after a small bowl, I’m stuffed. I still have a ways to go to get my appetite back, but I think that will improve rapidly now that I’m home.
Did I mention that I was home? And happy about that?
I got some real sleep last night, and that made the world a brand new place by dawn. I had some coffee, read my newspaper, reveled in the normalcy of it all. It’s good to be home.
One minor medical scare. I did experience some nasal drainage again. The doctor’s immediate reaction was that they would readmit me. My entire self deflated at that prospect. However, after a more detailed discussion, it seemed this was more of a nasal drip than a CSF one. The volume wasn’t concerning, so we agreed to monitor it and I would notify them if there were any changes.
My ears are also continuing to change on a regular basis. The tinnitus howl has subsided a bit, but I seem to be getting something akin to AM radio static in the ear now. Maybe it’s a sign that I’ll eventually gain some use of the ear again, but that’s probably just wishful thinking on my part.
All signs of leakage from anywhere are gone. That’s a relief. My appetite continues to grow, but it’s not back anywhere near normal yet. Some foods taste more or less right, but I’m still lacking the taste of sweet. Food should be one of the elemental pleasures, but it’s gone flat on me. It improves every day as does the facial palsy, so I’m optimistic. Just impatient, and maybe disappointed after my long fast. Further, I got on the scale this morning and I’ve lost 20 pounds in 10 days. I’m thinking about publishing a Brain Surgery Diet book, but I’m thinking the appeal may be pretty limited.
I’m also finding that I’m now the proud owner of a bionic ear. While I still can’t hear squat from the right one, the left one now operates at an unbelievable volume. People talking near me all sound like they are yelling. I can listen clearly to the TV at volumes which previously qualified as “muted” in the house. Being outside, gentle breezes make loud howling noises in my ear as if I was caught in a windstorm. This is going to take some getting used to. But these are things I can handle. I’m ready to continue working on regaining my balance and my hearing. I’m specifically committed to return to my previous levels of physical activity, and that will require conquering the balance problem. These are things I can do through sheer determination. And now that I’m out of the surgical woods, those pastures lie in front of me.
I should also note that while I did have some fleeting second thoughts last week about the surgical route I chose, even at this short distance, I’m back to being solidly convinced this was the right choice for me. I can heal from here and be done with it. That’s what I want.
I’m now catching up on the many many cards and emails that have poured in to support me. I’m not the warm & fuzzy type, but I was genuinely touched by people’s interest and concern for me as well as Kim and my parents. They’ve been through a lot to support this recovery too, and it’s nice that people are there to support them as well. This post-surgical phase has gone on longer than anyone hoped, and I am fully aware and maybe humbled by the fact that I couldn’t have made it through this alone.
The stitches came out yesterday, and my head feels much better about that. I also lost the stitches from the lumbar drain in my back. A nice little “X” shaped scar is there now. My boys have offered to tattoo a complimentary pirate map on my lower back leading to the “spot”.
Other improvements continue apace. I’m acclimating to ambient noise and find things like street traffic to be much less disorienting than just a few days ago. I still feel like I’m piloting a drunk man’s body, but he’s less drunk than earlier in the week, so I must be getting used to that as well. All in all, I feel like I’m healing, and so far I’m content to be patient with that process. I’m actually sort of enjoying the serenity of it all. I rarely find myself this at peace with the world. But I know me, and this hyper-laid back attitude is going to give way to boredom and impatience somewhere in the next couple of weeks. I’m enjoying it while I can.
I had my follow-up with Dr. Wayman today. He evaluated my hearing, and despite my periodic optimism over the last couple weeks, he confirmed that my right ear is now strictly ornamental. To be fair, it still holds up my glasses on that side and probably acts as a cranial heat sink. But in all the ways you typically think of an ear being useful… well, not so much.
He did offer that when I see him again in three months that we could discuss hearing aid options. There are apparently a couple of choices. One which is basically a conventional hearing aid in the bad ear with a wire and speaker over to the good ear. While it seems this would work, the idea of wires hanging around my head and something obstructing my good ear are not all that appealing. There is also a new option which was just recently approved. It is a cranial implant on the bad side, which uses the skull itself as a resonator to conduct sound to the good ear. I like that solution better, but I don’t know that I’m really psyched about a Borg-esque implant either. My first hope is that I simply adapt to unilateral hearing and don’t do anything. Given that my good ear still has excellent hearing , it seems plausible that I can make this work. Time will tell.
He also evaluated my facial nerve and that continues to improve. My symmetry is better, but it may be a couple of months or longer before I regain complete function. However, he is still pretty confident that I will regain complete function there. The lack of symmetry is hardly debilitating, but it is annoying. I notice it when I smile or laugh as it feels very uneven then. It even makes me a little self-conscious. I also continue to experience a lack of taste, especially sweets. And taking the joy out of eating just doesn’t seem fair. But the good news is that I still have noticeable improvements in all these areas every few days.
At this point in my recovery, I’m surprised by a few things. I wasn’t expecting that the facial nerve issues would last more than a week or two post-surgery. And I never anticipated losing my ability to taste properly. Not that anyone set that particular expectation, but for whatever reason, that was my preconception.
I’m also finding the balance issues to be much more profound than I expected. I guess I thought my brain would adapt faster. I think I expected that somehow I would get back to normal. But in reality, what’s happening is that I am redefining normal. The feelings associated with normal movement must all be baselined again. At this point I’m comfortable walking and driving, but neither activity feels “normal”. With each new activity I try, it takes a few days to gain comfort and confidence. I expect at some point it will seem as if it has always felt as it does now, but I’m not there yet.
Still, on a whole, I’m happy with my progress. I admit to being a bit disappointed that my hearing is gone, but of all the adjustments, I’m least concerned about that. And all the other post-surgical affectations should remediate themselves, if only I can be patient. Although patience isn’t really my long suit.
Well, so much for statistics. I went to meet some friends for lunch today. They brought along a guy who used to work with us, but whom I hadn’t seen in over a year. To my surprise, he’s sporting a scar similar to mine, but over the other ear. It turns out that he also had an acoustic neuroma removed, and was in surgery a few weeks ahead of me. The odds of this are astronomical. There’s a 1 in 100,000 chance of anyone having this, and my friends were sitting at a table with two of us. Amazing.
It turns out that he had a much rougher go of it than me. His tumor was “D” battery sized, and couldn’t be removed in its entirety. He also had a lot more difficulty getting a proper diagnosis despite having symptoms of tinnitus, facial paralysis, severe headaches, and vision problems. These were all the things I was trying to avoid by having mine removed early. And suddenly I’m pretty grateful to have been diagnosed accurately and early.
On the plus side, it was good in a way to hear that he was still suffering post-surgical balance issues, tinnitus, and headaches. It means that my recovery is somehow more normal. The doctors keep telling me that I’m doing great, but my family seems concerned that my progress isn’t what it should be. At least now I have another data point to abate their fears. And someone with whom to swap stories, as aspects of the post-surgical experience are pretty hard to relate to if you haven’t experienced it.
I had my follow-up appointment with Dr. Walter, the neurosurgeon, today. He’s happy with my progress, which is always good to hear. I expressed concern about several things I was still experiencing. He says my lack of proper taste is related to the facial nerve that still has not fully recovered. He expects that to all be back to normal before my next visit in 2 months. The morning headaches are a result of the neck muscles which were traumatized during the surgery reacting to being put back into use holding my head up in the morning. That’s all pretty normal, and I shouldn’t worry about the Tylenol I’m downing to make it tolerable. And finally, the fatigue issues is pretty normal for acoustic neuroma patients. This was the first I’d heard of this, but he said that he sees fatigue lasting much longer in AN patients than in any other surgery he does. He doesn’t really know why this is so, but while other patients are often back to reasonably normal in 4 weeks, AN patients often take twice that long. The bottom line is that I shouldn’t worry. It’s all normal. I did express that I was feeling a bit like I was wimping out and giving in to the fatigue. However, he counseled that I opted for the surgical path to front load the process and not have to worry about anything long term. I should be patient and give it time to resolve itself. The long view was that I don’t have 40 years of MRIs and checkups to look forward to. We shouldn’t quibble about a couple of weeks.
So for now I’m continuing my naps and early bedtimes. I’m continuing my daily walks and trying to acclimate myself to a normal routine about the house. Hopefully I’ll be up to returning to work in a couple of weeks.
The fog has lifted. It actually began last week, but all of a sudden I was free of the morning headaches and the general lethargy. There is often still some headache pain, but it’s minor. It mostly stems from my neck. Stretching my neck muscles, while painful at the time, provides enough relief that I don’t need to constantly be on Aleve or Tylenol. My balance also seems to have improved. I don’t feel my head swim as much when I move it quickly. I even managed to climb a ladder last weekend. It was a little disconcerting as I’m usually very comfortable working at heights. I was very conscious of my balance and was much more deliberate and cautious than I would normally have been. But it wasn’t scary, and I was able to do what I needed . If nothing else, it was a nice confidence boost that I will get back to a state of functional normalcy.
Tomorrow is my first day back at work. Given that my energy seems to have returned, I’m optimistic that it will go well. It will be odd though. I’ve never been away from work for even half this long before. But I suspect that by next week things will feel like they should.
It’s been two months now since my surgery. I’m feeling pretty much myself, although I’m still more tired than usual. Returning to work was more exhausting than I expected those first few days, but I’m up to a normal workload now. I’m back to full workouts as well, although I can’t quite manage the pre-surgical intensity. Still, it feels good to be active, even though I’m fuzzy headed from time to time. I can’t figure out what makes my sense of balance worse at some times than others. But it doesn’t feel scary anymore. It seems to help to be well hydrated and well rested, but maybe that’s just my imagination. After all, it always feels good to be hydrated and rested.
The headaches are still there. The intensity is gone and they are not constant anymore. They are just periodic mild annoyances, mostly starting as a stiff or sore neck and radiating up. But they are still daily. Encouragingly, the facial nerve has almost returned to normal, which is very cool. I can wink with my right eye again and actually get it closed. Also, my smile is balanced again, unless it gets really big. (But I don’t get that happy that often.) Taste has almost completely returned to normal as well. Sweets are still off, but just by a hair. At least they are enjoyable again.
While I no longer notice daily improvements in my condition, week on week, things still seem to be getting better.
I had my follow-up today with the neurosurgeon. I had a fresh MRI last week in prep for today, so the first order of business was to find out what story the pictures had to tell. He said there is no sign of the tumor at all, just a small piece of scar tissue where it was removed, and that was to be expected. Of course that had to be qualified. There’s always the possibility (however small) that a few tumor cells remained, so he would scan me again in 1 year and then at 3 years. If those scans were clean, then he would be confident that we were done. He also indicated that the brain looked fine and there seemed to be no signs of swelling or internal pressure. Anatomically, I looked as good as was possible.
So now it was my turn to ask questions. I expressed my biggest concern, that 3+ months after surgery I was still dependent on daily analgesics to deal with the headaches. He reiterated that retrosigmoid AN surgeries seem to result in more and worse lingering headaches than any other surgery he does. But he added that in every patient he’s ever had, they did abate eventually. He said that typically around the 3 month mark most patients started to see improvements. However, it wasn’t uncommon for the headaches to be a problem for significantly longer (6 months or even a year). There was really nothing more he could do about them as anatomically, everything is fine. This is just a matter of getting through the healing of the neck muscles injured during the surgery.
He was pleased that the over-the-counter meds seemed to be working. He could prescribe stronger stuff, but he didn’t really want to, which was fine with me as I really don’t want to start taking that stuff. He did encourage use of acetaminophen (Tylenol) over other analgesics with anti-inflammatory qualities (ibuprofin or naproxin). Apparently there is some data to suggest that the anti-inflammatories actually slow the healing process. Plus there is very little risk of suffering any sort of analgesic rebound (withdrawal symptoms) with acetaminophen. But he was fine with me taking Tylenol whenever I needed as long as I was staying within the over-the-counter dosage guidelines.
I also asked about my taste sensation. Especially this time of year, it’s tough to not have sweets taste right. I wondered, would I ever get that back? The bottom line is that he doesn’t know. He said that sensory nerves (taste, hearing, etc.) are particularly hard to predict. They can tell with motor nerves, but sensory nerves just seem to do whatever they do. He did say that while most patients return to a state where everyone else thinks they are back to normal, but they never quite feel completely normal again themselves. This is kind of where I am. People think I’m fine, but I don’t feel quite like me. My face still feels a little funny when I smile broadly or make other exaggerated gestures, my sense of taste is off just a bit, and I don’t feel as steady as I used to, sometimes even a little fuzzy headed. He said this may improve. It may not. It’s not bad, mind you. It’s just like I’m a half-bubble off of level. One more thing to get used to I guess.
It would seem I just need to be patient at this point. It was refreshing to learn that I’m not over dosing the pain drugs and that my headaches aren’t unusual. It doesn’t make them any more fun, but at least I don’t need to feel guilty every time I reach for the pill bottle.
Well, I’m a few days shy of my 5 month surgery anniversary. Things are still continuing to improve and change, so that’s a good thing. The headaches aren’t as intense as they were, but they still require constant medication. I’ve switched to 8-hour Tylenol, which seems to regularly get me about 6-7 hours of relief. I need to stay on top of it though as if I wait until I really need it, then I’m shot for almost an hour while I wait for the meds to kick in. Despite all I’ve been through, I’m still a certified wimp when it comes to headache pain.
In other news, sweets taste better. The sharp bitter taste in the right side of my mouth seems to be gone. The taste is still a little flat, but at least sweets are more enjoyable now. Not that this will help my waistline any, but it does pump up my reason-to-live index a couple of points. On a related note, my right eye has begun to tear excessively on occasion. Usually first thing in the morning or when I eat. Minimally the eye wells, but often tears will run right down my cheek. It makes it look like I’m really enjoying my dinner. The doctor said this was “perfectly normal” and related to the facial nerve irritation. (There’s a part of me that expects that should I start oozing blood out my pores that the doctor will tell me that it’s “perfectly normal”.) This seems really odd though. Early on they were concerned that eye would be dry. Now it leaks. But it’s all in the range of things you should expect. The only really annoying part is that when the eye tears, the moisture drains into my sinuses and makes my nose run. So now I’m not only crying at dinner, but I get to blow my nose too. It’s really very attractive.
It’s been a little over 6 months since the surgery. My progress seems to have plateaued, and that’s honestly a little disheartening. The major issue remains the headaches. I’ve been taking 8-hour Tylenol 3 or 4 times a day every day pretty much since the operation. And yes, I know that’s at or over the recommended daily dose. The drug takes 30 minutes to an hour to take effect. It lasts 2-3 hours where I feel pretty good, then I feel like crap for a couple hours because I don’t want to O.D. on the stuff. I need a new plan. This roller coaster is killing me.
I needed to know where my baseline was so I decided to go cold turkey for 24 hours. It was an extremely long day. I spent most of it resting, stretching, heating, massaging, or otherwise trying to cope. What I learned is that there really isn’t a drugless option if I want to be functional.
The following morning I started a new staggered strategy. I took a half-dose (1 pill) every four hours. There were several upsides to this approach. The dose was enough to make me functional. This also kept the drug levels pretty constant, which eliminated the swings. And it meant that the maximum I was taking was 5 or 6 pills/day which is at or under the guidelines. The downside is I never feel really good. But I do feel as good as I did fully drugged just a couple months ago. Somehow that does feel like progress. I’m also stuck remembering to dose every 4 hours, but that’s not too bad.
So I’m going with for a while. It seems better. It also seems that maybe it will be easier to wean myself from here. I can just stretch the intervals to 5, 6, 7 hours, etc. The hope being that eventually I get down to just taking drugs as needed.
I really want to be free of the headaches. Everything else is probably “close enough” to declare victory. But this has to stop.
Uncle! The headaches continue unabated. Yes, the 4-hour dosing gets it down to a dull ache, but I’m at a point now where that’s just not going to cut it. Seven months of head pain, 24×7. Maybe it’s not a record, but this can’t be normal. Further, I acquired a really minor head cold for a few days and my right eye (the one that’s been watering when I ate) just went nuts. It teared constantly for weeks. I could hardly see out of it and had to keep a tissue with me to dry up what was running down my cheek and dripping on my desk. This may have been unrelated to the surgery, but it was odd that it was just on the one side. So at my mother’s prodding (thanks Mom), I called the neurosurgeon earlier this week for a sanity check.
I was really expecting yet another dose of, “Well, this sort of thing is to be expected. Hang in there.” But to my surprise, I got their attention. They said I really should have noticed more improvement in the headaches by now. They think my symptoms could indicate that I still have a small CSF leak somewhere. (Symptoms: pain is minimized by lying flat, pain is in the neck and behind the eyes, fluids and caffeine help, exertion makes the pain worse, leaning over makes the pain worse.) So, they scheduled me for an MRI this morning. I had the test, and now I’m sitting and waiting for results.
It seems strange, but I’m really hoping they find something. In a way, my greatest fear is that the scan will come back clean and they’ll just shrug their shoulders. From what I read, these leaks can be hard to find. There are other types of scans that can be done. Do I push for them? Do I demand to get a second opinion? Or do I just go back to managing my pain and hope things get better over time?
Of course finding something is scary too. Will they need to operate again? That would be hell, but it would still be better than a lifetime of feeling like this. There apparently are some less invasive treatments, but we won’t know about any of the viable options until they can say for sure what and where this is. Finding something would also be frustrating. Why didn’t they find this back in October when I had the MRI follow-up? Have I suffered for months needlessly?
There’s also an interesting psychological reaction happening. For months I’ve been trying to convince myself that I’m getting better. In many respects I am better, but with regard to the headaches, now I don’t know if I’m really any better or if I’m just more adjusted to the constant pain. The other thing is that before I was (I thought) normal. So I tried to put on a brave face and behave that way. Now, since the doctor thinks there’s a problem, I suddenly have the psychological freedom to not feel good. And I don’t. I’m less tolerant of the pain all of a sudden. It’s like I have permission to feel crappy, which is both a relief (since I do feel crappy) and a curse (since I now let myself feel that way). Maybe the end is in sight. But if this is a dead-end, then I think the hardest part may be getting my head back to a place where I begin to accept this pain as normal again.
I did finally talk to the doctor yesterday. The good news is that my scan came back completely normal. No swelling, no fluid, no tumor, all clean and green.
The bad news, of course, is that result doesn’t make my head feel any better. He is still convinced this is muscular. He wants me to take muscle relaxants and see if that makes a difference. I’ve taken this medication before when I had hurt my back. In that case it did nothing for the pain or the condition, it just made me sleepy and loopy. I certainly don’t need to be any sleepier, and I’m not really looking forward to loopier (but maybe others are).
The reality is that this doesn’t mean I don’t have a leak. The MRI is not a definitive test. Actually there are no definitive tests, but there are more direct ones. The MRI looks for secondary indicators like a “sagging brain” or pooled fluid. Those would show only for major sustained leaks. Smaller and/or intermittent leaks are harder to find. If you want to know more about CSF leaks, I strongly recommend the patient forum at http://braintalkcommunities.org/forums/forumdisplay.php?f=126. There is a wealth of information there on symptoms, testing, treatments, as well as lots of patient stories.
The bottom line is that I still could have a leak. But he could be right, it could be muscular. Or I suppose it could be something else entirely. It’s hard to argue that we shouldn’t exhaust the conservative treatments first before we start sticking more things inside me. So I guess that’s where we’re at for now. I may also look into physical therapy as an option. I’ve responded well to that in the past. If this is a muscular thing, maybe that will help. If not, it probably won’t hurt.
For several weeks I did take the muscle relaxant on and off. I couldn’t tell if it was having much of an effect, but I couldn’t say it didn’t either. There was too much more going on. I was also being more aggressive about stretching and exercising my neck. This did seem to make a difference. I eventually got to the point where I was at least drug free for several hours every morning. Based on this success, I did contact my physical therapist and made arrangements to start PT treatments. He was able to make a couple of “adjustments” to my upper back and neck that each sounded like someone stepped on a bag of Doritos. I immediately had increased range of motion in my neck and shoulders and a significant reduction in the pain. I also was instructed in a more specific set of exercises to work on my neck and my TMJ. (He felt some of my issues could be related to a restricted range of motion in my jaw on the right side, but this could be facial nerve related as well since I do not have complete symmetry back).
The two days right after the PT adjustment were the best I’ve had since the surgery from a pain perspective. There is now little to no pain radiating up from my neck. I think we’re definitely on to something here. However, the pain that remains is now more classic tension headache. While I’m continuing to work on my neck from an orthopedic perspective, the headaches I’m left with do not feel related to muscles. The pain is more localized and specific than before. It is in the base of the skull, my temples, and behind my eyes. Perhaps by removing some of the peripheral issues I can now feel and focus on the more specific pain.
The question lingers though, what is causing the residual pain? Much of the pain still seems centered on the base of my skull. On the right side, this is exactly on the edge of the metal plate, so this could be related to the surrounding tissues adjusting to the plate. It also could be that my head needs to readjust and adapt now that the pressure from my neck and shoulders are gone. If it’s either of these, then my current PT course along with some patience should work.
It also occurs to me that what remains could be rebound headache. While my daily analgesic dose is under the recommended max dosage, I’ve been on them daily for 8 months. It’s certainly a possibility. The PT has relieved enough of the pain that I’m also going to make a concerted effort to wean myself off the meds. I’m down to not taking them constantly, but I still have them daily. I need to stop that for a couple weeks and see what the impact is.
I’ve also received some interesting advice from a couple of concerned readers that I’d like to share.
Beth writes about her boyfriend who has hydrocephalus. His fluid build up and enlarged ventricles were not picked up on routine MRIs. They were diagnosed by a neuro-opthamologist who enlarged his pupils with drops and could see the enlarged ventricles. The neurosurgeon then finally diagnosed the hydrocephalus based on that. Her boyfriend then had to surgery for a codman shunt.
Lillian writes about an unusual treatment path. She went to see a doctor who trained under Janet Travell (look her up; she was John F. Kennedy’s doctor and perfected injections to relieve him from his constant pain without making him too goofy to run the country). The goal of the treatment is to open up tight muscles to hydration and blood flow, to let the body heal itself. The procedure is for the doc to inject into the muscle a solution of B12, water, and lydocaine (it’s a vasodilator, not a pain reliever). The doc then fans the tip of the needle when it’s in the muscle (a bit painful but relatively quick), to break up any congestion. The skill required is knowledge as to exactly where to inject (i.e., what muscles control what pain) and how to manipulate the needles. The idea is that the tight muscles cause the headaches. The injections usually come in a series of 3, separated by a few days. This is sort of a really aggressive form of acupuncture.
I do appreciate the suggestions and that these folks shared their experiences. While I’m not exploring these ideas aggressively right now, I’m leaving that door open should my current course not pan out. But at least for now, I’m making progress. That’s a good thing.
The physical therapy has been very effective. The radiating neck pain is gone. The residual tension headaches are not as severe nor are they constant. As a result, my attitude has improved significantly, and my reason to live index is considerably higher. I’m still taking some pain meds every day, but the dosage is very low and it’s not a 24×7 thing. I’m pretty convinced at this point that I’m not experiencing any rebound headaches. The pain doesn’t resurface upon the meds wearing off. It’s more tied to time of day and activity level. Quieter activity days are less headache prone, and pain is worse later in the day when I’m tired. Usually, I’m pain free and drug free for most of the morning.
The therapist is still working on some motion restrictions in the C1-C2 area at the top of my neck. These may be related to my remaining headaches. Pain is diminishing week-on-week now. This may just be natural healing now that my neck and shoulders are better, or it may be because of his work. Either way… things continue to improve.
I went for my PT this morning and we agreed that I’m at a point of diminishing returns. So for now, I’m done. I can go back in a few weeks if I feel I the need. While I’m not completely free of the headaches, it has been significant progress on a whole. So I’m viewing this as a success. We’ll have to see how (or if) things progress over the next few weeks.
For reference, while the headaches are still there every day the severity is low. They are annoying, not debilitating. Further, a single ibuprofen tablet knocks them almost completely out, at least to the point that I’m not consciously aware of them. I’m taking a tablet 2 or 3 times a day, which makes the days go pretty normally. This is half the daily allowed dosage so I feel well within the safety zone.
My experience with other surgeries (knee and shoulder) was that it took 18 months to 2 years before the surgery site was not experiencing some level of daily pain. Arguably, the headache inducing head/neck pain is a lot harder to just ignore than knee pain. I think that’s why I require some level of medication this time as opposed to the previous cases where I just “played through the pain.” Nonetheless, I think I’m on a normal post-surgical healing path now.
My attitude is good, and I’m optimistic that I will get a full recovery out of this. Well, at least as full as I expected when I started.
It’s been the better part of a month since I stopped the PT. I’m still doing the exercises, but I haven’t seen any real improvement. On the plus side though, I haven’t done any back sliding. I’m still living on ibuprofen (3 tablets/day on average), but I’ve only had one really debilitating headache in the last few weeks. This is definitely livable, but I really want to get to a point where I’m not constantly dependent on pain meds.
I called the neurosurgeon to update him and ask what options I had from here. He responded by giving me a script for Tramadol. This is primarily a pain drug, and my goal was not so much to score better drugs, but to get some sort of therapy. So I started another round of research on my own. I found this paper abstract, which was attempting to get at the underlying cause of post-surgical headaches from retrosigmoid AN/VS operations. I was originally intrigued by the positive sumatriptan (same as Imitrex) effects. That drug seems to interact mostly with the trigeminal nerve (aka Facial nerve) which I know I still have issues with because of my taste and teary eye issues.
But in looking at trigeminal neuralgia, it doesn’t match my symptoms too well. However, the abstract also mentions occipital neuralgia as being the cause in a few of the cases. That matches my symptoms very well. References are here, here, and here.
The Johns Hopkins article (and several other references I found) talk about the nerve block as a diagnostic tool, not to mention the pain relief. From what I read, they give you the injection and within minutes the pain just goes away (assuming that was the problem). If the pain doesn’t go away, then it’s something else. It seems pretty definitive as a test, and also as a treatment. They usually inject steroids into the nerve as well which help to heal it. There are usually follow-up injections for a few weeks, often with chiropractic manipulations as well. The prognosis sounds pretty good. All assuming of course, this is what it is.
I faxed a letter to my neurosurgeon explaining my findings, my symptoms, and my desire for some sort of therapy rather than just pain relief. He responded by referring me to the hospital’s pain clinic. Dr. John Markman is both neurologist and anesthesiologist and often performs the sort of nerve blocks I’ve been reading about. I saw Dr. Markman today and he confirmed that my symptoms are classic for occipital neuralgia. Further, he thinks this is all soft tissue related. That is, the nerve isn’t pinched by the bones or anything, but rather is being aggravated by the inflamed muscles protruding from the neck in the same C2 opening as the occipital nerve. He wants to perform the nerve block and expects that I’ll get about 6 weeks of relief from the injection. He may have to repeat it a few times, but I should see increasing relief with each injection, and he expects I’ll recover fully and be free of the headaches. Unfortunately, it’ll be almost 2 weeks before he can schedule me for the treatment. However, given that I’ve been doing this for 10 months, another 2 weeks is nothing. Ironically, in the meantime he wants me to start taking the Tramadol instead of the ibuprofen.
I’m a little concerned the Tramadol won’t agree with my stomach as it’s in the opium family. Morphine, codeine, or anything related always seems to make me nauseous. But I agreed to try it and see what reaction I get. He assured me this was the “Bud Light” of opiate drugs, so maybe it’ll be okay. Either way, I’m really looking forward to the injection, and pretty optimistic this will provide the therapeutic relief I’m so desperately seeking.
The Tramadol was a disaster. The instructions were to take one or two pills depending on the pain. I started with just one as I was worried about my stomach. The good news is that one pill didn’t seem to bother my stomach. The bad news is that it didn’t seem to bother my head either. My headache was raging. So I took a second pill hoping it would have a better effect. The pain relief was barely noticeable, but it made me nauseous as all hell. And worse, now I was stuck suffering for another 6 hours until this was all out of my system before I dared take anything else. I went back to my usual ibuprofen routine. Moral: if it ain’t broke, don’t fix it.
On a more encouraging note, I did have the trigger point injection in my neck a couple days ago. The procedure was pretty straightforward and quick. It’s just a series of injections over about five minutes. I admit that based on what I had read that I was expecting a more immediate effect. But while my neck was slightly numb around the injection site, my head really didn’t feel any better.
However, after a couple a days I’m happy to report that there is a significant reduction in pain. The shots definitely made a difference. I’m going longer between medicine doses, and not requiring meds so early in the day. Further, my unmedicated head feels clearer and less fuzzy. And when I do take ibuprofen, the pain relief is quicker and more complete. I think I’m definitely on a good track here.
The shots are supposed to last up to 4-6 weeks. I go back in a month to visit the doctor again. It’s too early to declare victory, but I’m optimistic now that this is a fixable situation. It does make me wish I’d pushed this 6 months ago rather than waiting for nature to take its course. Hopefully this log will help someone else to not have to suffer for so long.
Fellow AN surgery survivor and headache sufferer Chris, reports that he was told from other AN patients that the headaches will persist for up to a year and a half at which time they will/should fade. He has 5 more months to go and is trying to be patient.
In other news, the trigger point injection results seem even more promising than a few days ago. For the last two days I’ve been down to a single ibuprofen tablet in the evening. That’s it. Most of the day is drug free. While it’s not 100% pain free, it’s a pretty livable level. I’m able to be active and still be personable to my friends and family. I really don’t know what to expect from here. So far none of the treatments have really resulted in any backsliding. But I don’t know if things will continue to improve or whether I’m going to plateau quickly as happened with the physical therapy.
I’m continuing with the trigger point injections. The effect of the first round peaked about the time of the last post. I did regress a bit from there, but there was still a notable net gain. I’m back to 2 or 3 ibuprofen per day, but the result of that is almost complete relief from the headaches. Further, there are no extreme events where the headaches get real bad. Nor do I any longer have the timing issue where if I didn’t get meds in me soon enough after the pain started that it would escalate into a real severe headache. If I don’t take any meds I’m uncomfortable, but it’s not debilitating.
I had a second round of injections last week and go for another round next week. The doctor thinks we “have this on the run” and wants to increase the frequency in order to knock it out. Since there are virtually no side effects and they are clearly making a positive difference, this seems a good plan to me. I’m now genuinely optimistic that I’m going to be completely free of the headaches, at which point I can finally end this tome-ish tale. I’m sure you’re as excited as I am.
You have no idea how much I was hoping to make this my last post. Unfortunately, while I’ve received a 3rd round of injections, the progress seems to have again plateaued. This is more than a little discouraging. I have seen continuing progress with the range of motion in my neck, and it’s made some interesting new pops and clicks as things seem to be breaking loose. However, the pain really isn’t much different now than it was a month ago. Maybe the new range of motion is just exacerbating pain in the short term for healing in the long term. Or maybe I really am just killing time with all these therapies until it heals on its own. I simply don’t know.
I go back to the doctor next week and I’ll discuss this all with him and see if there are alternate or additional things we can try. Maybe adding in massage therapy or chiropractic would be useful. Maybe not. In the meantime, I’m taking comfort in recalling how bad I felt a year ago, and trying to focus on how much better I am doing—even if it’s not as good as I was hoping I’d be doing.
The saga continues. I did see the doctor and we agreed that my progress had plateaued. Once again, something worked, but only for a bit. There are still palpable knots in both sides of my neck in the C2 area, which are likely the root of the problem (or at least the exterior layer of the onion we are peeling). So now we’re going to try other strategies to alleviate them.
The doctor wanted me to try a different sort of physical therapy with a therapist he’s worked with that specializes in necks. I don’t know that this will be different than what my last therapist tried, but I made progress before, and maybe a fresh round of treatments will make a little more progress. It’s worth a shot. Unfortunately, they can’t even see me for an evaluation until next week, so that will drag things out a bit.
In the meantime, the doctor prescribed indomethacin for me. It’s an industrial strength NSAID with good effect on the central nervous system. The thinking is that the enhanced anti-inflammatory properties will help. So far, I’m encouraged by the new meds. They last about 10 hours, which is double what the ibuprofen was getting me. It makes for a more even day pain wise. Further, it has reduced the size of the knots in my neck by quite a bit. It took a few days to achieve that, and I don’t know if they will return in size if I stop. But for now, this is good relief. I’ll wait until after the PT starts and decide then whether or not to try a stint without the NSAID.
So yet again, a bit more progress. But I’m not there yet.
I almost hate to say it, but I’m making progress again. Slowly. The new physical therapist got off to a slow start, but she seems well tuned to some really fine nuances in the structure of my neck. Twice a week I go in for 30 minutes and she manipulates the joints and soft tissue in my neck to get me additional freedom of movement. As of earlier this week, I am noticing an improvement. Minimally, the indomethacin is now lasting a solid 12 hours, where before I was lucky to get 9 or 10 hours from it. I’m also still really happy with the efficacy of the new drug. When on it, I’m close to pain free, and that’s made a big impact on the rest of my life.
Tomorrow is 15 months from my surgery date. I never imagined when I started writing this that it would drag on for so long. I’m sure you felt that way when you started reading it too.
There’s good news and bad news. The good news is that my head is continuing to make progress. I’ve even had a solid 16-hour pain-free period between medicine doses last evening and night. That’s encouraging. The down side is that the neck manipulations last week apparently triggered a pinched nerve somewhere around C4-C5 (lower than the physical therapist has been working) which resulted in some pretty intense pain and burning sensations down my right arm. Unfortunately, the indomethacin did nothing to abate that pain. So while my head was doing better, my shoulder was clearly not.
The physical therapists (two different ones) tried to resolve the pinch, but with only minimal success. I finally contacted a chiropractor to see if he could help. A single chiropractic adjustment made a world of difference. A second, along with a lot of stretching and gentle exercise at home, has nearly resolved the shoulder problem. However, while I was there, the chiropractor also cracked my neck in a couple of places. I’m not sure how this is going to reconcile with the physical therapist, but it felt good. I’m kind of violating my own rule of doubling up treatments, but I’m going to pursue both paths for a couple weeks and see what happens. My previous experience with chiropractic is that while it is great at resolving the acute issue, it doesn’t result in actual rehabilitation, which is my goal. So I’m hoping that chiropractic will break things loose, and PT will keep them that way.
Meanwhile, I’m giving out $25 co-pays like they’re Halloween candy…
It’s a new year, and I’m hoping for some good things health wise. I thought maybe I’d start out by updating my progress here. The physical therapist pretty much dismissed me last week saying that she’d done all she could do. In retrospect, I don’t think that was much. I started with her at the same time as the indomethacin, and I’m thinking that the meds had more impact than she did. I am continuing to see the chiropractor, at least for a few weeks. He’s still breaking some stuff loose in my neck, which at least feels like progress. He seems to get less each time, so I should hit a point of diminishing returns pretty quickly. I also saw the neurologist at the pain clinic last week. He encouraged me to continue to see the chiropractor as long as I felt it was helping, and he re-upped my prescription. After that, I’m basically in a “wait and see” mode for a few months.
The reality at this point is that even if the indomethacin were something I needed permanently, I’m probably okay enough. This certainly isn’t what I planned for going in to the surgery, but at this point, I feel pretty normal when medicated. At least what I think of as normal now, it’s honestly hard to remember back how I was 18 months ago. Further, there are no real side effects to the meds, and taking pills twice a day seems pretty normal for someone pushing 50, at least based on what all my friends are doing. I’m still optimistic that I’ll continue to make small month-on-month progress. As I’ve noted before, I do seem to improve regardless of what I’m doing, so maybe what I need is just more patience. However, patience isn’t really my long suit.
Things haven’t really changed much on the headache front. However, something else has come to light that no one ever warned me about going into this. It’s really incredible how much stuff doctors don’t tell you and leave you to learn on your own. During the last year or so, I had noted that I often found it difficult to follow conversations. This wasn’t something I had ever had trouble with before, at least not with conversations to which I was trying to pay attention. So, because I am now deaf in my right ear as a result of the surgery, I had kind of written this off to actual difficulty hearing. I am unable to locate sources of sound with just one ear, so background noise became very difficult to sort out, and conversations among groups in a room were very disconcerting. As my body adjusted to my new aural environment, I’ve been learning new coping mechanisms and this has been improving some. This seemed especially so in my personal life.
However, none of that really explained what was going on at work. Conference calls or even small group discussions were still maddeningly difficult to follow. These were not noisy environments. Sometimes it was just a bilateral discussion, and I would find I had completely failed to get the key facts out of what was being said. I wasn’t having any difficulty digesting information from email discussions, or even from very technical articles. It was just spoken conversations.
Over the last couple of weeks, I’ve been having two different series of conversations with people at work. One thread has involved a lot of brainstorming and creative ideation. The other involved a fairly technical topic related to implementation of some prototypes. What I’ve been noticing is that I have no trouble hanging in the brainstorming conversations. But the technical conversations are a disaster. If someone asks a question, I can talk at length about the answer. But when listening to someone else talk tech turkey, it’s like I understand what they said, but yet it doesn’t register. Two minutes later I’m wondering what the topic was.
Now we all learn in Biology class that the left side of the body is controlled by the right side of the brain and vice-versa. However, I naively assumed that the crossed wiring stopped at the neck. Seriously, what intelligent designer would wire your left ear to the right side of your head when the left hemisphere of your brain is right there. But that’s apparently the way it works. Your ears are wired to the opposite side of your head, just like the rest of the body. We also learned in class that the right brain is responsible for feelings, big picture thinking, imagination, and creativity. Meanwhile, the left brain excels at pattern recognition, math and science, and facts and figures.
Given that I am now processing all conversations through my right brain (left ear), I’m beginning to wonder if this is contributing to my difficulty in following technically laden speech. This may well be good news for Kim when she wants to talk about my feelings or debate religion. But it doesn’t bode well for my colleagues. Fortunately, I work in an environment where lots of stuff gets documented and/or exchanged over email, so this isn’t a horrible handicap. But it is damned peculiar, and certainly not something I ever anticipated going into the surgery. I wonder if this is something I’ll adjust to more over time as well? I rather hope so.
I am continuing to make very slow but noticeable progress. I went to the chiropractor until about the end of February. He seemed to get me a lot of additional range of motion. I always felt real loose and comfortable when I left there. I quickly reached a point of diminishing returns though, so I stopped the visits. But there was net progress in the chiropractic treatments. In retrospect, I wish I’d done them sooner.
I’ve had a couple of new trigger point injections, to relieve points in my neck where there are still knots. They have seemed to help as well. I’m still taking 25mg of indomethacin twice daily, but at that dosage it’s pretty rare that I have a headache now. However, I can still feel the tension start to mount when I’m overdue for a dose, so I don’t think I’m ready to wean off it yet.
I’m beginning to think that that two year magic date that others talked about is going to be about right. At the pace that I’m continuing to improve, another 4 to 6 months should cure me, and that will be just about 2 years from the original surgery.
Good news for me. I’ve finally weaned down to one 25mg indomethacin daily. The downside is that I often have a few rough hours after lunch, but otherwise, things are pretty good. I have been out on my road bike more this summer which seems to do a couple things. On the one hand I find it really encouraging from a balance standpoint. I’m able to ride pretty normally without wobbling at all. I feel confident, and can manage 30 mile rides with ease. I’ve also noticed that the exertion of holding my head up while I ride (it’s not really a natural position) often makes my neck feel somewhat looser for the next few days. So I think the exercise is good for me. Hopefully I’ll be able to get off the meds entirely before year’s end.
On the down side, I just found out that my son’s 16-year old friend was diagnosed with an AN. This is desperately unfortunate and really unusual in someone so young. It also seems really odd that while the overall incidence of this is only 1 in 100,000, this is two people I know personally that have had this in the last 2 years. I don’t know that many people. Nonetheless, I wish him well. Hopefully his youth will help him bounce back quicker than us old folks.
Well, I’m still at the 1 pill/day, and that seems to be going okay. I was kind of hoping I’d be able to get off the meds altogether by now, but once again I’ve plateaued. I’m trying massage therapy this time to see if I can relieve the “altered tone” in the neck muscles. There’s definitely still tension there, and over the course of an unmedicated day it radiates into my head. I’m expecting this will get me a little farther down the road. Everything seems to get me a little progress. Will it get me all the way? Hopefully, but I’ve said that before. Sooner or later the journey has to end though. Right?
Continued small progress. I’ve had a few days where I go without meds, but most days a pill still goes down. Not at a specific time though. Just when I need it, which often isn’t until dinnertime. I’ve used the massage therapy and another round of chiropractic to relieve issues as I feel them, but at the moment I’m not currently following any treatment regiment. I’m very close to done, so I’m just going to continue my exercises and see if I can continue to wean myself off the indomethacin. Otherwise, life is back to normal.
I was hoping at the outset to wrap this story with the claim that I was as good as new. It’s now three years since my surgery date, and while I’m close, I’m not quite as “new” as I had anticipated. It’s still a good outcome though. My three-year MRI came back clean. The doctor said I had a “perfect brain scan”, and I’ve been milking that phrase at every opportunity to induce eye-rolling in my family. However, he apologized for the headaches admitting that he still didn’t understand what caused them and didn’t have any solutions. He thought time might still heal them, and encouraged me to let him know if they ever did get better.
Consequently, I have resigned myself to needing the indomethacin once a day to keep the late-day headaches at bay. I have also discovered that a simple dose of Tylenol or Motrin does the trick as well. With the small dose of pain reliever, I am headache free. Without it, it’s a bad night. But that’s a pretty small price. I’m 49 now, and most of my peers would be grateful to only be on one pill a day.
Otherwise, life has resumed. I’m active. I don’t feel the surgery keeps me from doing anything, although I’m a little more careful when climbing ladders or doing other balance related tasks. As I said early on, I think the key to a successful outcome is to focus on redefining normal. I do genuinely feel “normal” again. But I also recognize that it isn’t quite the same normal as I was going in. But it’s close enough.
I’d also like to thank all the readers who have written me over the years. It’s great to know this diary has helped others, and I appreciate you sharing your experiences as well. To any new patients or their families just reading this, I’m happy to try and answer any questions you may have, and I do hope you find my story encouraging. There is life again on the other side.