Author Topic: Postoperative rehab for vestibular schwannoma (acoustic neuroma)  (Read 57964 times)

caryawilson

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #30 on: May 04, 2016, 07:22:21 pm »
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
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

tje

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #31 on: August 11, 2016, 07:16:21 am »
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

lisab66

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #32 on: August 12, 2016, 10:47:34 am »
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.

Mpatrick

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #33 on: August 15, 2016, 07:09:53 am »
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
Surgical removal of a 2 cm acoustic neuroma on 7-5-16
sub occipital cranionatomy

MarthaT

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #34 on: September 24, 2016, 05:35:40 pm »
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.

Stina44

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #35 on: September 27, 2016, 11:10:17 am »
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.

mccsurg

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #36 on: September 27, 2016, 06:17:26 pm »
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
2.1 cm left sided AN
Removed July 30, 2004

mccsurg

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #37 on: September 27, 2016, 06:20:57 pm »
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.
2.1 cm left sided AN
Removed July 30, 2004

mccsurg

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #38 on: September 27, 2016, 06:26:31 pm »
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
2.1 cm left sided AN
Removed July 30, 2004

MarthaT

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #39 on: September 28, 2016, 10:33:46 am »
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?

MarlaB

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Re: Postoperative rehab for vestibular schwannoma (acoustic neuroma)
« Reply #40 on: September 28, 2016, 11:09:22 am »
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