Postoperative rehab for vestibular schwannoma (acoustic neuroma)

[mccsurg]

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

[PaulW]

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

[mccsurg]

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

[PaulW]

found a newer article by the same authors

http://www.ncbi.nlm.nih.gov/pubmed/22027076
 

[cindyj]

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

[mccsurg]

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

[mccsurg]

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

[jenr]

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.

[cindyj]

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!

[Suu]

That sure is a good quote. Getting uncomfortable means we can show ourselves just what we can do. 

[mccsurg]

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

[bartay]

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.

[IanInVenice]

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.

[Bellium]

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.

[mccsurg]

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