Postoperative rehab for vestibular schwannoma (acoustic neuroma)

[mccsurg]

As a physician and a post-operative VS (AN) patient (now 8 years out) I'm amazed and disturbed by the lack of credible medical information about postop rehab. Since it appears that the medical community doesn't have it's act together on this, I'd be very interested to hear from patients who are at least 1 year out from surgery and consider themselves to be "high function". As a starting point, I'd define "high function" as: 1) back to work full time (if appropriate) and 2) able to ride a 2 wheel bicycle. I can think of other parameters, but I think if you can ride a 2 wheel bike without training wheels you'd probably meet the other criteria. In particular, I want to know what you did for rehab and why you think it was important to your success.

matt

[mccsurg]

To be more clear about what I'm hoping to get, I'll share my experience.

I had a 2.1 cm AN on the left side. I had a translabyrinthine resection in July of 2005. My postop instructions were to walk as much as possible, then find things that made me dizzy and do them until they don't. I was not offered any formal vestibular rehab or the like. As an aside and as a disclaimer, I'll say that I am a General Surgeon. For those of you who are not familiar, this basically means I'm like the most goal oriented person you've ever met, but hopefully in a good way.

After a bit of a battle (friendly disagreement about the necessary length of stay) with my surgeons, I was discharged on POD #3 from Mayo (Minnesota). On the day of discharge I walked around the block in Rochester and it took me over an hour and wiped me out for the rest of the day. The next day I returned to the Twin Cities and started a maniacal program of walking. I had good shoes (Lowa low hikers) and wore them out over the next 6 weeks. By the end of week 2 I was literally walking at least 10 miles a day. It often took most of the day, but other than sit around and feel dizzy, I didn't have much else to do (and I'm not one to sit about and do nothing). I walked, napped, and walked some more. Sometime around the 4th week I was feeling like I'd accomplished the first task and started to look for things to be more challenging. The ultimate challenge, I found, was walking with my eyes closed. Such an amazing challenge for my poor proprioception system! (explained below). Most of the times that I tried that particular challenge I would have someone with me as a spotter. I'd recommend that for those of you that want to try it because I found myself walking off the path by 10 steps. More than once I actually turned in a circle! It took me about 4 months, but I ultimately was able to take 25 "normal" paces with my eyes closed and stay in a (relatively) straight line.

I returned to work 1/2 time in the 5th week. I returned full time in the 7th week. I had to make a lot of accommodations at work, I had to change the way that I do some things, but I never looked back.

Prior to my surgery, I had been involved in Tae Kwon Do for years. I had progressed to the level of Red belt and would have been eligible for test for my Black belt in November of 2005 had I not had the surgery. I was forbidden from resuming training by my surgeons for 6 months. I would have gone back earlier had my SO not heard their instructions! Nonetheless, in January of 2006 I resumed my TKD training. Whatever I had done before did not prepare me for the immense challenges this presented to my system. I had many days where I would literally crawl off the training floor on hands and knees hoping to not throw up from vertigo. It took me 16 months of serious work, but in July 2006 I tested for and achieved my Black belt.

I tried riding bike in 2006 as well. I have been able to ride since then without too much problem as long as I don't look over my left shoulder. Doing so usually ends up with me swerving all over the road!

In summary, then, I think that a program of reasonably vigorous physical exercise in the first few months, followed by a prolonged effort at doing very challenging things for my balance has been an amazing boon to my recovery. Honestly, most people I meet have no idea that I'm deaf in one ear, that I have any issues with balance, or that I ever had brain surgery. Those who know me well know that I still struggle. I fall over, fatigue pretty quickly, avoid walking in the dark, and other issues.

I'm anxious to hear your success stories!

matt


For those that are interested, here is proprioception. Basically, the balance system of "normal" people is like a three legged stool, with the eyes acting as one leg of the stool and each inner ear acting as the other legs. The inner ear is very much like a gyroscope that helps you determine your position in space. After the AN surgery has removed one inner ear, you have a three legged stool with 2 legs. Not such a stable configuration any longer. Put an AN patient in a dark room and you're now on 1 leg and most of us are, more or less, all over the place.

Like everything in nature, though, you'll adapt to things that don't kill you. You didn't die of your AN surgery, so now you have to adapt. Your brain needs to figure out a way of making up for that missing leg of the 3 legged stool. The answer is proprioception. There are little nerve receptors that sense the position of the parts of your body relative to one another. Think of the Romberg test, which they probably make you do at each check up. Stand with your feet together, arms outstretched in front of you, palms up. Close your eyes. Feel your ankles start  to wobble? Feel the muscles around your hips and knees start to fire? That's your body using proprioception to try and balance. Your brain is testing the tension around your joints, trying to fine tune it to bring you into balance. Does it work? Yes, it actually works surprisingly well. The problem, as best I can tell, is that it's a lot of mental work and it tires you out. So, the more you do to tune the system (walking, etc.) the more efficient it becomes.

Hope that helps.

[Seal]

Matt,

Without getting too wordy, I started this thread now almost four years ago to assist those who come along wondering about the same thing that we all had to face: life after AN surgery.    We know everyone is different, but hopefully this gives an average time line to a recovery track.    There are some other threads that are also similar.

http://www.anausa.org/smf/index.php?topic=8639.0

Between three young children, work, and staying in shape, I can honestly say that life can't get much better!    We'll never have the same abilities that we had a 22yrs old, but I am doing everything I want to do and more!

SteveK

[mccsurg]

SteveK,

Thanks! Looking through the threads I see a really common theme; everyone's outcome is different. My concern is that we don't know if it's because the people are all different or that the rehab is different. There does not seem to be any codifying of the postop rehab process. So if every patient is doing something different for rehab, why would be surprised that the outcomes are all over the map?

I know that AN is a rare tumor, but vestibular problems are the same, whether from AN or something else. We may, as a group, just have more severe symptoms. I'm hopeful that, by learning from those who were successful, I may be able create basic guidelines for postop rehab. The advantage that I have is physician cred. If I can come up with something good, I can go out to surgeons and start pushing it.

So, SteveK, are you high functioning? What did you do for rehab after surgery?

matt

matt

[Seal]

Matt,

Yes, I absolutely believe that everyone is different and thus will have different results as well as different trajectories.     I think if you are looking for a data baseline however, there is some middle ground where we all start.   For example, what was the patient's life before the AN and before the operation.    If someone who is not athletically active and older cannot expect the same results as someone who has been running consistently for 20 years.     For example, I only had to show that I could climb a flight of stairs at MGH to get released.  Since I had been doing stationary bike training all that winter, my legs were in top form.   The evaluation doctor asked me to to please come down from the second flight of stairs as i showed I could climb stairs.    The paperwork was done that afternoon and I was released 48 hours after my operation.     Note everyone going into this operation has the same preparation that I had. 

I think common sense would dictate a baseline of where the patient started pre-op and then set a reasonable course for each patient with the understanding that there will be weekly ups and downs as the body repairs itself.      Your question about high functioning requires a definition of "high functioning".     I think this is different for every person and of course their age as well.   I'm not trying to be picky here, but I'm just trying to determine baselines that could help everyone.   

I believe in the following:   1)  Everyone needs to listen to their own body, work it when possible but give it the rest it craves to recuperate.   2)  An excercise routine that they can follow to continue to build on natural repairs that their body is undertaking.  This could vary from daily walks around the house and backyard to easy bike rides or short runs.     I started by walking circles downstairs immediately post-op.    Now I am 100% in all my activities.   

[mccsurg]

Steve,

This is turning into a fascinating conversation! I tried to define high functioning at the outset as 1) returning to work full time and 2) able to ride a two wheel bicycle (without assistive aids) as I think that's a reasonable starting point. That point may need to move, but it's a place to start.

So, let me pose this to you. My bias in starting this thread is that physical activity after surgery is THE most important component to functional recovery. There is nothing in your Physical Activity thread that would make me think otherwise. If physical activity is the key component to surgery, then perhaps surgery should not be done on those who don't meet a baseline fitness standard. Are you really doing a patient a service by subjecting them to a terrible recovery? Most AN surgery can be delayed months without consequence. This would give preop patients a chance to develop a baseline of fitness and activity that would carry them through the surgery as you and I have done. But without definitively establishing this link between recovery and activity, how can you hope to bend the recovery curve for those looking forward to surgery?

matt

[Seal]

Matt,

First of all, I believe that your experience and mine are probably north of the norm.   This is probably due to the fact that we were already engrained with ongoing sports and training as part of our daily lives.    I believe this is very important to successful recovery, but you can't expect everyone to come from this same perspective. 
 
"If physical activity is the key component to surgery, then perhaps surgery should not be done on those who don't meet a baseline fitness standard. Are you really doing a patient a service by subjecting them to a terrible recovery? Most AN surgery can be delayed months without consequence. "

In my case, my tumor was highly cystic (alot of fluid) and rapidly inflating causing major problems.    Others are less active and grow more slowly allowing additional time to evaluate options.    However, I don't agree that a litmus test should be put out there for patients that can only run a mile in under 10 minutes or something else.    The message that I would like to convey that activity will only enhance recover, not hinder it.     Yeah, you'll have those bad days pop up, but they quickly become overwhelmed by the really good days as progress takes hold.   In short, we have huge areas of grey here from patient to patient, especially when you factor in age differences.     I believe that its impossible to set limits based on a small sampling of experiences.   So the best you could hope for is a middle of the road guidance that will cover most victims of acoustic neuromas.    That being said, I think an elastic evaluation based on a baseline analysis of the patient could be workable going forward which could assist the post-op world.    I think we would all agree that post-op, we are basically left on our own.    Otherwise, what would we all be doing reading this forum?   eh?

SteveK     

[mccsurg]

Again, I mostly agree. The difference is: 1) I am a surgeon and 2) I'm also getting more involved in health care policy. I know that "centers of excellence" don't happen by accident. They happens because someone drives a team to take random elements and put them together in systematic way. Once that happens, the system can be examined and studied and hopefully improved. When you've got the chaos that currently exists in post-op recovery from Acoustic Neuroma surgery the only reasonable thing you can say is "well, everyones recovery is different". As a surgeon and a scientist, that is not an acceptable answer.

So, to the point, if one wanted to put together a large, multicenter trial to test the hypothesis that activity level pre-op and activity level post-op correlate to improved post-operative vestibular function, one would need anecdotal evidence to support the hypothesis. The point of this thread is to hopefully gather some anecdotal evidence to do just that.

matt

[robertb]

Interesting and a well needed project. I have been dealing with severe dizziness for 5 months now and after 3 Chemical Labrinthectomy treatments that haven't completely alleviated my dizzies, I finally have translab surgery scheduled for Feb 27th (next week). From all my research and reading it seems like everyone has similarities but so may differences in their pre and post op experiences. Before my symptoms grounded me, I surfed 4 to 5 days a week (conditions permitting) on waves off of the Northern California coast and considered myself to be as physically fit as a 62 year old could be. Although my AN is relatively small at 11mm, my symptoms of dizzies, incredible tinnitus, hearing loss, and intense head pressure have completely grounded/disabled me. If I do anything physical, my dizzies get so bad as to make me have to check out. I have to lay still, be horizontal, to eliminate my symptoms. I am always tired. I can't exercise but still have an appetite so I am gaining weight. I have tried to surf a couple of times out of desperation and the resulting disorientation was dangerous and horrific. Even the motion of the waves is hard for me to view now. I will check in after my surgery. I can't wait to be 'normal' again and am so anxious to get back in the ocean to see another sunrise from the water while catching a few waves before work. I'll do my best to get there. Maybe everyones symptoms and paths are different as a result of where the tumor is located on the cranial nerves? To say folks need to exercise to prepare for surgery isn't always possible. rb

[Cheryl R]

There is also the factor that ahead of time one can not tell ahead of time what damage the tumor has done to what nerve.  There can be some testing pre op which can tell more about balance but not all drs do that.      One does not always know what compensation has already occured on the other side that can play a part post op also.        I never did any post op rehab but having done my walking as a hospital nurse am sure had helped.      I got up and walked immediately post op on my own with a bit of hanging on to my husband the first couple times.   This was a plump non athletic patient.       Never realized till being outside that did have balance issues which improved with just my making sure to do my walking.Back to work in 2 months.          Then found to be NF2 and more surgery 5 yrs later and walked immed also and back to work in 2 mos.                 Retired prior to the next surgery for the AN on the other side and amazed myself and all by getting up and walking with no difficulty with the no balance nerves.          I do have some issues with that with some types of surfaces but you'd have to be with me for a time to see them.           So it does vary with all of us.         There are many on the forum who do well and don't stay on here to let it be known how they did do well with all types of recovery.          It is also said by many that the drs don't really understand what it feels like post op inspite of many giving a list of some possible ways one can feel and the risks that can happen.                  So I still feel it all does vary among a post op surgical pt and can not be always known ahead how it may or may not be.         As a nurse I saw how many health conditions had a wide variation in how the patient handled the diagnosis and recovery.
      Finding the right surgeon who has extensive experience in the surgical aspect of ANs is very important but some handle the after part better than others.           This topic, I am sure, has many opinions and probably all of us have some amount of being "right".          I am just going with my own experience with being the patient.                                          Cheryl R

[cindyj]

Great thread, Matt!  I am a bit over 4 years out - translab...I was 49 and in pretty good shape prior to surgery, mainly from a lot of tennis.  I, like many, had probably already compensated a good bit for the compromised balance nerve - years prior to diagnosis, I went through many months of vertigo (some mild, some debilitating).  I remember thinking how awful it was going to be to live that way, but I had young boys and had to just work through it (not knowing what "it" was). 

Post op, I started walking on the 4th day and never stopped.  That's about all I did really - no other vestib therapy.  I started playing tennis again at about 5 or 6 weeks, tried out a series of sculling (rowing) classes a few months out - very challenging, started training for a 1/2 marathon about 8 months post op (never been a runner before), took up dance lessons with my husband - lots of spinning and other challenges - so much fun, though!  Throughout it all (and to this day), I had/have moments of a bit of sea sickness (wonky head, as we call it around here), but I have always believed it is better to work through it than to "give in" to it and just sit or lie down when it happens.  It does not get better just sitting.  Interestingly, just two weeks ago, I had back to back migraines (first in two years) and was forced to be pretty much flat on my back for 48 hours.  Once I was able to get back up and around, I found that my vestib system was WAY off - similar to first couple of weeks post op.  However, I got moving and within a couple of days my system had recalibrated itself.  It was not easy or pleasant, but it did work. 

I know there are patients who can't be active for various reasons, but for those who can, pushing through the nausea and teeter- tottering by walking, running or something, really does help. 

Oh, yes, I can ride a bike still, but I am realistic about my limitations and I think that's one of them   I won't be doing any high wire acts either...and I do hang on to someone if I'm on rough terrain and it's dark
cindy

[mccsurg]

Cindy, Cheryl, and Robert,

Thanks to all of you for your posts. As you have seen, I can be a bit wordy, but today I'll be more brief. I had a long day of surgery, I'm exhausted and "tippy" (probably close to the wonkihead if I understand that term) and need sleep. Yes, high functioning and almost 8 years out and still subject the same issues.

Robert: Best of luck to you with your surgery! Of course I understand that nothing will work all of the time and it's probably going to fall int he 80/20 rule. But still, if you can make a real impact with 80% it seems more than worth the effort.

Cheryl: Agreed with the nerve damage idea, but given that the tumor involves the vestibular branch of the 8th cranial nerve by definition, I think it's reasonable to assume that most everyone will have vestibular symptoms. Yes, many will have deafness (but not all) and some will have significant facial nerve (CN 7) symptoms that can be very bothersome, but should not significant impact the vestibular symptoms. I'm concentrating on the vestibular symptoms here (hence the bike riding). Also, I appreciate that many don't stay. I, myself, read the forum in the weeks after my surgery and didn't return until just recently, when an acquaintance of my SO had AN surgery. He's having an awful recovery. That any my slow, but sure acceptance that I'm never going to be "normal" are definitely fueling my interest at this time.

Cindy: You ARE the choir! "It does not get better just sitting". I wish I could be so succinct! Interesting about your migraines and brief setback. I had a recent eye exam with pupil dilation. Unfortunately, my pupils stayed dilated for about 60 hours after the exam and, let me tell you, that played havoc with my vestibular system! Are you still running 1/2's? I started running them about 18 months ago (4 under my belt so far) and we're planning to go to Cincinnati for the Flying Pig in May.

matt

[Big Steve]

I'm jumping the gun here, only 6 weeks after surgery, but I'm already close to "high functioning" as defined by mccsurg.  I'm working nearly full time and I jogged 12 miles yesterday, including descending down twisting trails at a pretty good clip.  Been pushing the rehab hard, 45+ miles per week of jogging/walking.  Not quite yet ready to ski, which is tough because my SO and buds are hitting 2 feet of fresh powder this weekend  but, hey, as Emerson said, envy is ignorance.  I plan to try skiing groomers in a couple weeks, then see if I can work up to steeper stuff and eventually to join my buds for May high mountain touring.  I'm confident that I'll be in the mountains this summer, although perhaps not at my previous level.

I'll endeavor to post re my progress on my one-year anniversary after surgery.

[mccsurg]

Big Steve! Congratulations on your successful rehab!

I have a couple of quick questions, if I may:
1) what was your activity level before surgery?
2) when did you hit your first miler after surgery?
3) how old are you?

Thanks!

matt

[Big Steve]

Answers:

1) Very active:  Over the past 25 years I've done substantial mountain travel, averaged 60+ ski days/year, ran 1,000 mile/year including lots of trail running (85 ultramarathon finishes), all despite being a big guy and having a near full-time law practice.

2) If by "miler" you mean my first post-surgery mile walk: 4 days post-surgery, I think.

3) 56 y.o.

Some additional info:  My AN rendered me SSD in fall 2008 but the AN was not detected back then.  Chronic vertigo started Oct. 2012 but, looking back, I had numerous episodes of balance issues while skiing and mountaineering/cross country hiking the 1-1/2 years or so prior to the vertigo.  I mention this because I surmise that my brain was receiving bad right side vestibular system signals for quite awhile.

I have a couple of quick questions, if I may:
1) what was your activity level before surgery?
2) when did you hit your first miler after surgery?
3) how old are you?