ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mccsurg on February 18, 2013, 05:08:44 pm
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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
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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.
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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
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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
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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.
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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
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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
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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
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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
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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
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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 :D
cindy
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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
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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.
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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
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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?
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Steve,
Thanks! Thats exactly what I meant by miler, but I guess I figured that you'd get that. It seems very clear, from reading the forum, that preop activity level equates to early post-op mobility and probably to level of recovery. By that measure, other than the bother of SSD, fatigue, and the adventure of trying to get around in low light situations you should be great!
matt
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Hi Matt,
You may want to check out this guy.
He is considered an expert in vestibular issues.
While we talk about the vestibular system compensating, it will never fully recover.
We just get used to it.
Rather lengthy but interesting lecture on Head Impulse Testing for detecting vestibular deficits
Head impulse testing, maybe a great baseline test prior to the AN removal, to measure both the damage and amount of compensation.
Dr Michael Hamalgyi
http://www.youtube.com/watch?v=oDZeBEhAdck
Other things that maybe a factor in recovery.
The amount of damage/compensation prior to surgery.
Some people have a totally destroyed balance nerve prior to surgery, so there is no difference to their balance after surgery.
Some people are trying Gentamicin as "Prehab" to destroy the balance nerve before surgery to improve recovery times.
http://www.ncbi.nlm.nih.gov/pubmed/19574236
I think we need to look towards best practice in treating balance issues, to determine postoperative rehab methods.
AN'ers seem to have more difficulties in comparison with other small craniotomies.
I am not sure that there is wide spread understanding in the medical community of the implications of the compromised balance nerve, in relation to Acoustic Neuroma surgeries.
Well worth having a read of this site too.
http://vestibular.org/understanding-vestibular-disorder/symptoms
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Paul,
Thanks! I'll definitely get the Gent paper pulled, that's fascinating stuff. I'd already seen the Vestibular.org stuff, but a great link to keep in mind. Interesting to read through now that I'm much farther out from surgery. Yes, the symptoms don't necessarily disappear, we just get better accommodation to them.
I haven't had time to look at the video yet, but I'll try to do that later tonight. Thanks for passing that along also!
Man, you are definitely preaching to the choir when you say: "I think we need to look towards best practice in treating balance issues, to determine postoperative rehab methods". That was my very thinking in starting this thread! As such a discrete injury it seems ideal for rehab...
matt
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found a newer article by the same authors
http://www.ncbi.nlm.nih.gov/pubmed/22027076
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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
Yes, just did one two weeks ago - a huge breast cancer event in Jax, FL...however, I must disclose ;) that I do not run the whole thing - I jog/walk, jog/walk...nothing to do w/ AN, just not a very good runner...Flying Pig, huh? Sounds interesting!
cindy
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Paul,
I looked at that second paper also (just the abstract). It looks like that whole issue of the journal is dedicated to rehab issues. I'm trying to work out a way to get a copy without spending a ton of money! Thanks
matt
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We're hoping it's interesting! I also came to running well after my AN surgery. My SO runs marathons and I got tired of sitting around waiting for her to finish. So I decided to try my hand at 1/2's. She's going for 50 states, so I still have plenty to do!
matt
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Super late to the this thread...I am not a year out, but would consider myself high functioning. I had surgery about 9 months ago. I went back to work part time after about a month with a few day thrown in there before that and full time by probably 7 weeks. I can ride a two wheel bike (even with a full basket of groceries on the front), but wouldn't take out my road bike any longer. I think I am limited to trips to the grocery store and back.
At about 6 weeks I did go snow skiing for a couple runs. I did go SLOW but was able to do it relatively well. The problem with my balance was more when I was in the lift lines. I don't know if "muscle memory" works or macro muscle control kicks in, but when I am doing very physical things my balance tends to be better. I did even take a lesson and ski Alta in February (at 8 weeks), which was wonderful.
I started surfing a little again in May, but that gets tiring quickly and being under the water is even more disorienting than before the surgery.
For my recovery I did walk everyday or a couple times a day for the first several months and did the limited vestibular exercises the PT at the hospital gave me. Lately I have been more "dizzy" than normal, but have really slacked on the exercises. So, I have started walking and doing them again. I feel like I was going backward in my progress, and quickly. I think the key is to continue what you were doing to maintain you level of recovery.
I have also started going to visual tracking therapy, that also focuses on the vestibular system. It has been interesting so far. I am anxious to see the results after a few months of it. What makes me the most dizzy is sitting at my desk and looking up and down from my computer to my desk and back again. UGH!
I do think that being physically active is a huge part of the recovery, as well as having a positive attitude. I haven't been on the forum much because I felt defeated and low after reading what others' experiences were. Even though I am doing pretty well overall, I really dislike this "new normal" and will continue to do whatever it takes to get back to my old self. To do that I have to get comfortable with making myself uncomfortable and keep pushing myself.
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To do that I have to get comfortable with making myself uncomfortable and keep pushing myself.
Very well put! Awesome how much you have done since your surgery - keep it up!
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That sure is a good quote. Getting uncomfortable means we can show ourselves just what we can do. ;D
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Jenr,
I agree completely and congratulations on your successful rehab! As I said previously, one of my few post-op instructions was "find things that make you dizzy and do them until they don't". It means putting yourself in uncomfortable situations for a while, but it really makes a difference. I also agree that physical activity makes a world of difference. We just visited Yosemite for the first time (before the fire!). Kathy and I hiked from the parking lot in the valley to the top of Half Dome and back in 10 hours, which is a very good time. For those unfamiliar, I'll put a link to the National Park Service video below.
matt
http://www.nps.gov/pwr/customcf/audio_video/dspEmbeddedObject.cfm?regionCode=pwr&vSources=http%3A%2F%2Fwww%2Enps%2Egov%2Ffeaturecontent%2Fvideos%2Fyose%2Dhikinghalfdome1%5F480x270%2Emp4%7Chttp%3A%2F%2Fwww%2Enps%2Egov%2Ffeaturecontent%2Fvideos%2Fyose%2Dhikinghalfdome1%5F240x134%2Emp4%7Chttp%3A%2F%2Fwww%2Enps%2Egov%2Ffeaturecontent%2Fvideos%2Fyose%2Dhikinghalfdome1%5F1280x720%2Emp4&vLabels=Standard%7C%7CDial%2DUp%7C%7CBroadband%20%28HD%29%7C&vWidth=480&vHeight=270&vTitle=Hiking%20Half%20Dome&vSplash=http%3A%2F%2Fwww%2Enps%2Egov%2Ffeaturecontent%2Fvideos%2Fyose%2Dhikinghalfdome1%5Fsplash%2Ejpg&vCCFilename=%2Fav%2Fpwr%2FavElement%2Fyose%2Dhikinghalfdome2%2Exml&showPlaceholder=false
(http://www.nps.gov/pwr/customcf/audio_video/dspEmbeddedObject.cfm?regionCode=pwr&vSources=http%3A%2F%2Fwww%2Enps%2Egov%2Ffeaturecontent%2Fvideos%2Fyose%2Dhikinghalfdome1%5F480x270%2Emp4%7Chttp%3A%2F%2Fwww%2Enps%2Egov%2Ffeaturecontent%2Fvideos%2Fyose%2Dhikinghalfdome1%5F240x134%2Emp4%7Chttp%3A%2F%2Fwww%2Enps%2Egov%2Ffeaturecontent%2Fvideos%2Fyose%2Dhikinghalfdome1%5F1280x720%2Emp4&vLabels=Standard%7C%7CDial%2DUp%7C%7CBroadband%20%28HD%29%7C&vWidth=480&vHeight=270&vTitle=Hiking%20Half%20Dome&vSplash=http%3A%2F%2Fwww%2Enps%2Egov%2Ffeaturecontent%2Fvideos%2Fyose%2Dhikinghalfdome1%5Fsplash%2Ejpg&vCCFilename=%2Fav%2Fpwr%2FavElement%2Fyose%2Dhikinghalfdome2%2Exml&showPlaceholder=false)
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Possibly jumping in on this thread a tad late......
I live in Germany and a 3 week stay in a rehab clinic is standard after discharge for patients who have had neurosurgery. I cant honestly attest to its effectiveness as in my final few days I spoke with my doctors and they were of the opinion it wasn't entirely necessary in my case as I hadn't suffered too badly post op, save for going completely deaf on the AN side and some pretty heavy tinnitus. They suggested an out patient rehab instead. I am really on board with how much value they place on "mandated" rehab here.
In terms of prehab you can do yourself alot of favors in the run up to the surgery. I started doing crossfit a few months before and did alot of lower body and leg work in preparation for the surgery. I got it into my head that the better my lower body was the easier it would be to cope with balance problems post op. I really believe it helped considerably.
I guess I've been pretty lucky with my op. Woke up with no facial paresis/paralysis (though I have experienced a bit recently) and have been on my feet since day 2. The nurse helped me to the toilet and laughed when I stood on my left leg (AN side) and lifted the seat with my right foot (It's an funny habit I have)and I've been walking pretty much as normal since.
Really, its still early days as I'm only 3 weeks post op on Friday but Im already itching to get back lifting weights and running as soon as I can. Doctors have warned me off lifting anything over 5kg for at least the first 6 weeks. The fear as I understand it is about a pressure build up in my head. Id be curious to know about anyone else's experiences with starting back in on lifting and/or strenuous activity as I'm been a little nervous about lifting anything heavier than my 3 month old (conveniently she is under 5 kg).
Im considering doing some light exercise bike work after week 4 and my other half is talking me into doing some yoga as well. Again, Id be very interested to hear about the experience of others here.
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Hello Matt (and all others in the thread)
Am 3 months post OP
I am a soccer player
I still have dizziness, headaches, all that rubbish.
Any suggestions on how to rehab faster? I run on one day, bike a few days later and try to hike/run on a third day.
This sucks!
Ian.
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Hi! I just came across your thread from 2013 while doing a bit of research for myself. I am a 31 year old female diagnosed with a 3.5cm AN in 11/2015 after a bout of sudden hearing loss 3/2011 (no MRI ordered - prescribed prednisone and hearing returned WNL) and facial numbness followed by sudden hearing loss a week later in 11/2015. I had surgery at Columbia University Medical Center 1/19/2016 and am 15 weeks post op; my surgery was retrosigmoid and all of my nerves were left intact. I would consider myself high level pre-op: spin class 2-3x/week, running, biking, free weights 1-2x/week, and working on med surg floors assisting patients (bending, lifting, squatting - etc.). Because of my physical therapy background, I requested a script for vestibular rehab and started 2 weeks post op. I participated for 12 weeks. I am not certified in vestibular rehab, but plan to become certified next year as I would love to help patients wth shared experiences. Post operatively I walked as much as I could tolerate, participated in VR and my home exercises, and went back to the gym 2-3x/week for 45 minutes to walk inclines, do short jogs (up to 1 mike), and bike. Having an 8 month at home has been challenging, but I am doing what I can to stay active and facilitate a successful recovery. I have SSD and residual visual vestibular problems. Never any facial nerve problems and the initial facial numbness I had was gone immediately after surgery.i returned to work part time this week (I became part time after the birth of my daughter in August). I would love to hear what you have been doing since 2013 and if there is any way I can help or what I would be able to bring to my place of employment after my certification. As I mentioned, I work inpatient med surg, but my hospital's outpatient clinic has a well established vestibular clinic which is where I went for VR.
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IanInVenice and Bellium,
Wow, thanks for reaching out! Honestly, I had pretty much forgotten about this thread until your posts. I'm glad to hear that both of your surgeries went well although it sounds like your recovery, Ian, is a little slower.
Since 2013 I have continued to be very active. I just ran a 10K race last weekend averaging a bit under 9 minutes per mile. Not my best time, to be sure, but decent enough.
I finally decided to retire from clinical practice of surgery. The sleep deprivation of being on call was getting overwhelming and would affect my balance for 5–7 days. So now I'm working on starting up a plant-based restaurant in Saint Paul, MN.
My only advice for the two of you is patience. In surgery, with scars, we always say that what you've got at a year is what you have to live with. It's not the same for brain recovery. You can continue to make it better.
matt
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Fascinating conversation. First about me. 4.5 cm tumor and 17 hour surgery. Surgically removed 7 and 8 nerve. My test for leaving Hopkins was walking up and down four stairs. At this point, I barely felt alive but I could walk around the floor of my hospital. I left hospital in four days.
I did the same thing as the Surgeon. I walked and I did any activity that would make me feel sick.. All small stuff. Turn head fast, walk with eyes closed, one leg swapping on soccer ball, etc. Most of my vestibular issues were gone in two weeks. All vestibular issues were good, until, I started swimming at 6 weeks. Every time I turned my head in the water, I would feel sick. I kept swimming. First day was 20 laps, then 40 laps for a week. Then I started to swim 1-2 miles. Note the dizziness, I experienced during swimming went away within a week. I made sure never to miss a day of swimming as long as it made me nauseous
I retuned to work after 6.5 months. My main issue preventing work was loss of cognitive ability.
Today, I have a great quality of life and I do all activities except that are hindered by eye issues. For example, I have been kiteboarding again but my eye has taken away some of the enjoyment.
Interesting topic coorelating vestibular rehab and physical activity. I was highly active before AND today. Bike, run, surf, gym, volleyball, etc
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Matt,
I came across your discussion and would welcome an opportunity to talk with you about my post-op issues because of your profession and that you have had this operation. Maybe you have similar issues and can explain them to me. I am 28-months out from my operation and continue to have both pressure in my head and a funny sensation in my head that I cannot explain, including my doctors at Smilo. It feels like I am half drunk all the time and when my head bounces-in the car on a bumpy road-the sensation in my head gets worse, but stops immediately when the bumps stop. Last Dec. I had a follow-up MRi, which only showed good things. Neither of my doctors, ear and neurosurgeon, can not explain what I'm feeling or why, and basically said I'll have to live with it.
Both hearing and balance nerves were cut.
Tom
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This is an awesome thread. He's my question. My surgeon is suggesting gentamicin injection in my left ear. The thinking behind this is to poison the vestibular nerve. This will give me great vertigo, but the though is long term ( afte my surgery 9/27) my body will be already well on its way to coping with only one side working. Does anyone have experience with this? And I the vertigo post surgery that this really makes sense? I know evening is different. Just hoping for different ideas and view points.
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I am six weeks out from my acoustic neuroma removal. I spent 4 days in ICU and for first two weeks I could barely walk on my own. Six weeks later I am way more improved but still in pain and tiring very fast and needing to be in quiet room for periods of time. I thought by. Is I would be back to walking or at least doing more physically stuff and I just can't yet without experiencing pain and exhaustion. To hear you have recovered so fast makes me so jealous. My doctors have assured me I am doing all the right things and will need 12 weeks to make a full recovery. My incision is still very sore it has gotten better where you can barely see it but still tender to touch and I still have headaches every morning. I also lost hearing in my left ear because the tumor was wrapped around the nerve. So adjusting to that has been challenging as well. Any tips on how to get myself back or motivated would help
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Hi Matt,
I'm only 4 months out, but working full time and rode my bike 2 miles (first time) day before yesterday. AND have some opinions about what helped...
I am 62 and generally healthy but not especially active, except for some international folkdancing, living in an apartment 3 flights up, etc.
After the surgery (trans-lab: zero hearing or balance from left ear now), I was in the hospital 14 days with a CSF leak (and a second surgery to patch it). Once out, I began walking about 5-10 miles a week--not a lot, but a little more than my previous average. I walked in the hospital, too--the long hall was maybe about a block. Less, during the days they were draining CSF every 2 hours.
At 4 1/2 weeks after surgery (2 1/2 weeks out of the hospital), I returned to folkdancing. I did about a dozen dances that night--and EVERYTHING was better the next day. This was the most major turning point I've experienced. I think what made the difference is that I was doing something for which I had a quite precise mental "map"--each specific dance, its styling, plus really REALLY trying to dance ON the beat (rather than near the beat).
Also, before surgery, I had sometimes (in a simple dance, in a line holding hands of dancers on either side) experimented with dancing with my eyes shut for a minute or two at a time. (It gives a quite different experience of the body moving.) I was uncertain if I would EVER be able to do this again--but I began to be able to, a few weeks ago! I take this as a sign my brain is truly adapting to the single-sided vestibular signal rather than learning to substitute another sense, or at least not vision. Maybe proprioception alone could carry this? but I don't think so.
I also did vestibular rehab once a week for several weeks. It didn't seem like it was much help, but of course it's difficult to tell. My therapists had low expectations: when I asked about getting down on the floor and back up again, they wanted to show me how to grab furniture to pull myself up (and I was already way past that). Early on, I began to devise my own rehab exercises. Example: that old exercise we called "windmills" (stand with arms out, twist to touch hand to opposite toe, return to arms out; reverse). If an action made my head swim, it had rehab potential. The trick is to find a way to do it that triggers the reaction but is (1) safe, and (2) doesn't trigger it so much you stop or won't do it again.
One really great thing they did is put me on a treadmill with handholds, first or second session. The little bit of balance those handholds gave me let me walk at a normal speed again, carrying my own weight. It was a revelation--and what helped me decide to attempt so early a return to dancing (slight balance help from dancers on either side). There's a principle here: if a little help of some kind lets you do something almost normally, whole systems of movement may kick in.
I've now quit vestibular rehab, but continued folkdancing (and added a second night a week), and am 3 weeks into learning Aikido (total newbie for any martial art). And beginning to bike a little.
About the Aikido: I went there asking if they could teach me to fall safely. (I hadn't fallen since the surgery, but if I keep getting older and living in the icy north I expect I will, now and then.) On the first night, they taught me to fall over backwards from a stand (on mats), roll on my back with head tucked, use my momentum to rock up into kneeling, then stand. (I was amazed!) Balance is a theme that runs through the entire discipline, so I will be there a few months, then we'll see.
Also: I'm beginning to realize that it is possible to be aware BOTH of a "junk" balance signal AND a good one in the same moment. I thought the "junk" signal might disappear from my awareness as my brain adapted--and, it might. Or, things may continue as they are, with both the usable orientation and the "junk" signal both in awareness. As a long-time meditator, my path through AN has been eased by simply accepting the signals that are coming in. Full-on vertigo is incapacitating, but at some degree, some wobbliness can be accepted as simply an unpleasant thing that is here.
SO: my tentative take-aways.
- Early activity helps. It may not need to be a lot, but needs to focus on what's hard and/or what triggers that unpleasant off-balance sensation.
- Having a precise "target" helps a lot. Could be an old activity that was learned well. Could be something new--with enough coaching to really aim at a precise result.
- Moving "normally," even if it takes some special help, is important.
- The "junk" balance signal, at least sometimes and when it is mild, can just be allowed to be the way it is, rather than making it a distraction.
So: that's my two cents.
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I am 8 1/2 years post-op, i do not work do to chronic pain. But i am able to ride a bike no training wheels!
My surgery left me 100% deaf in my left ear, so my balance was horrible. I was also left with facial paralysis on the left side of my face as well as not being able to walk at all initially and then only with a walker when i left the hospital.
Rehab wise, i had physical therapy for 2 hours a day 3 days a week for 4 months (i think, it was along time ago) where i did things like elliptical machines and leg lifts to strengthen my legs and lots of things like standing in a corner, on one foot, woth my eyes closed, to work on my balance.
I also had occupational therapy for a hour a day, 3 days a week, to regain my dexterity. I only had that for a few weeks though.
I also had speach therapy, even though i could talk fine, it was to help me regain my cognitive abilities. I did that for an hour a day, 3 days a week for about 2 weeks longer than i had physical therapy.
After all of that i can walk, ride a bike, read(i use to have to read everything out loud so i could comprehend it) i can do most everything i could do before my surgery.
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Many apologies for the very late reply. Tom, sounds like you're experiencing what all of us have right after surgery and you're not getting over it. Since this thread is really about rehab, what have you done for rehab?
matt
Matt,
I came across your discussion and would welcome an opportunity to talk with you about my post-op issues because of your profession and that you have had this operation. Maybe you have similar issues and can explain them to me. I am 28-months out from my operation and continue to have both pressure in my head and a funny sensation in my head that I cannot explain, including my doctors at Smilo. It feels like I am half drunk all the time and when my head bounces-in the car on a bumpy road-the sensation in my head gets worse, but stops immediately when the bumps stop. Last Dec. I had a follow-up MRi, which only showed good things. Neither of my doctors, ear and neurosurgeon, can not explain what I'm feeling or why, and basically said I'll have to live with it.
Both hearing and balance nerves were cut.
Tom
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Lisa,
Sorry I missed this last month. I think this is a very interesting idea and the data that I've seen suggest that it definitely improves recovery. I think I would do it if it was offered.
matt
This is an awesome thread. He's my question. My surgeon is suggesting gentamicin injection in my left ear. The thinking behind this is to poison the vestibular nerve. This will give me great vertigo, but the though is long term ( afte my surgery 9/27) my body will be already well on its way to coping with only one side working. Does anyone have experience with this? And I the vertigo post surgery that this really makes sense? I know evening is different. Just hoping for different ideas and view points.
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Mpatrick,
It does sound like you're doing OK. Believe me, all of us who have had a translab surgery (total deafness, acoustic and vestibular branches of cranial nerve VIII taken) have experienced what you have. My theory, which I posited back at the beginning, is that being active before surgery helps you after. In large part, I think, because you are then not accepting of a reduced activity level. Reading MarthaT's post just below yours is pretty much typical. My best advice for you is push through. Push hard. Really, really hard. Don't accept that you can't do something because you had this surgery because it isn't so. Best of luck and let us know how you're doing.
matt
I am six weeks out from my acoustic neuroma removal. I spent 4 days in ICU and for first two weeks I could barely walk on my own. Six weeks later I am way more improved but still in pain and tiring very fast and needing to be in quiet room for periods of time. I thought by. Is I would be back to walking or at least doing more physically stuff and I just can't yet without experiencing pain and exhaustion. To hear you have recovered so fast makes me so jealous. My doctors have assured me I am doing all the right things and will need 12 weeks to make a full recovery. My incision is still very sore it has gotten better where you can barely see it but still tender to touch and I still have headaches every morning. I also lost hearing in my left ear because the tumor was wrapped around the nerve. So adjusting to that has been challenging as well. Any tips on how to get myself back or motivated would help
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Just for the record: I spent 2 days in ICU and almost 2 weeks in the hospital--and yes have lost all hearing and all balance from the left ear. During my time in the hospital, I was not allowed to walk without a walker AND an attendant.
After discharge, just walking around the house tired me. Being outdoors was freaky--a little breeze on my head, sounds from all around--WAY TOO MUCH!!!
In the 3rd week after surgery I went to two appointments and went on two small outings with friends. I just about melted down after (or sometimes during) each.
It wasn't until fully 4 weeks after the surgery that I went for my first "long" walk: about 1/2 mile, then lunch with a friend, then 1/2 mile back. And had to take an extended nap. But I kept going for 1/2 mile to 2 mile walks in the next week, and logged about 7 miles that week. At 4 weeks, I was still waking up feeling like I'd been kicked in the head--but with ibuprofen and moving around, I'd feel (somewhat) better after a couple of hours. Lots of numbness and sensitivity around the incision.
Returning to folkdancing (at 5 1/2 weeks) was a BIG experiment. It wasn't clear to me that I could do so much as ONE dance, even with clued-in friends dancing on either side of me for balance help! To my delight, I was able to do 10-12 very simple, very low-energy dances @ about 3 min each--spread over a 3-hour period--nothing athletic, or with any turning, or even complicated. And I slept most of the next day! But was also more coordinated in walking that next day--it was the biggest "stair-step" improvement in my entire recovery. But despite this, I was not looking very great at 6 weeks!
I think the folkdance experiment was successful for me because I was doing something patterned that I knew very, very well--patterns that were "in my bones" from many different periods of my life. I am, in my own life, making this into a principle: move, yes, but especially move in ways that involve a clear goal or pattern for the movement--and looking for other ways to apply it. TIP #1: This formula may be useful for others: if there is a patterned activity you have ever done, see if you can work with it, even with a simplified version of it, even with some help. Aiming at a precise movement goal (rather than, e.g., getting across the room somehow without falling) may stimulate the brain differently--and those differences may matter for recovery.
Btw, I saw my surgeon again yesterday, and he thought (at week 16 now) that I am maybe 65% recovered, and should expect to continue to see major improvements for a few more months, and more subtle improvements for up to a year or more. TIP #2: It may be important not to feel or believe that one's state at 12 weeks (or something) is as good as one is going to get!!!
Question: (I'm the odd duck who reads medical journal articles for information--humanities PhD, working in healthcare statistics R&D...) Does anybody know of research that even slightly overlaps with my principle of activity aiming at a goal with some precision?
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I don't know of any research, but I have heard that it is recommended to keep up with Vestibular therapy and/or balance work FOREVER.
;-)
MarlaB