Author Topic: Percentage of patients not imptoving balance  (Read 518 times)

gunns

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Percentage of patients not imptoving balance
« on: September 24, 2019, 06:22:34 pm »
Had my surgery in July of 2017 and still not getting any better.  Whenever away from home I have to use a cane 100% of the time.  About the time I think I can chuck the cane I have a bad near fall or actually fall.  While at home I furniture surf.  Wonky head episodes numerous times a day with falls and near falls several times a month.  In the past, before surgery, I broke my arm and back due to unexplained falls.  My last bad fall, post op, was backwards off my deck.  I landed on my back in the yard.  Luckily no broken bones this time.  My eye sight is still a problem.  I can no longer completely read the closed caption on the TV before it disappears.  I had temporary facial paralysis, eye, choking (no gag reflex) and nasal drainage issues immediately post op.  The facial paralysis cleared up but balance, eyesight issues, choking and nasal drainage have not gone away.  My last visit with the surgeon did not go well.  His advice on the choking and nasal drainage was to swallow more often and carry a handkerchief and blow my nose frequently.  I'm not making that up.  He was serious.  Obviously I am done with him.

Are there others out there that are experiencing similar problems?  By that I mean are they struggling with efforts to improve!  I've been riding motorcycles for over 55 years and don't dare attempt it now.  I haven't had my Indian out for a ride in three years.




Greece Lover

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Re: Percentage of patients not imptoving balance
« Reply #1 on: September 25, 2019, 10:38:28 am »
I have had symptoms since my surgery of tears in AN side eye and my nose running and sometimes excessive salivating sometimes when I eat certain things.  It's pretty intermittent.  But these are usually caused, from what my doc said, by trauma to the facial  nerve and then nerves growing back in a way with new weird connections that weren't there before.  I'm not sure what can be done about it at this point.

regarding the balance: have you tried formal vestibular physical therapy. There are people who specialize in that and I found it incredibly helpful. 

good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

gunns

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Re: Percentage of patients not imptoving balance
« Reply #2 on: September 25, 2019, 05:10:16 pm »
Yes, I've tried the therapy with a vestibular therapist but had no noticeable success.  I've heard about the nerves growing back improperly.  I recall stories of patients that had dry eye issues because of nerve damage.  The nerve that promotes the production of saliva when chewing grew back to the nerve for the eye.  So they would chew gum to keep the eye lubricated.  Ain't the human body a wounder. Not sure if its true but I got that story off this website.

Greece Lover

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Re: Percentage of patients not imptoving balance
« Reply #3 on: September 26, 2019, 09:49:03 am »
My doctor told me of a patient of his who would sweat on one side of the face every time he ate. . . the body is weird and amazing for sure.

Sorry the vestibular therapy didn't work.  Good luck.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

lryan42

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Re: Percentage of patients not imptoving balance
« Reply #4 on: September 26, 2019, 12:19:12 pm »
Hi.  So sorry to hear about your vestibular issues not resolving.

I don't know how much vestibular rehab you did, but for me it's been a real game-changer.  I felt awful before my rehab - and spent 6 months doing exercises twice daily and in the clinic once a week.

Progress was slow, but it was progress.  I'm WAY better now than I was.  Not perfect, by any means, but better.

My rehab audiologist said that some patients need constant exercises to re-train the brain and compensate for the inappropriate signals it's getting from the AN side.  You (and I) may be in that boat.

One final thing - I did both "traditional" VRT as well as a new proprietary treatment which was 80% on the computer.  I found the later REALLY helped more than "just" the traditional VRT.

Happy to talk about this in detail if you'd like  - pm me and we can connect.

Liam
2017 - Mild vestibular symptoms; lots of testing, misdiagnosis, and vestibular rehab
2018 - MRI w/o contrast: 4mm x 3mm x 2mm AN
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN

My AN's location is inside the vestibule (rare) and not treatable w/o definitely going SSD; waiting and watching for now.

gunns

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Re: Percentage of patients not imptoving balance
« Reply #5 on: September 26, 2019, 02:57:32 pm »
Hi Iryan42,
   I Appreciate your info and glad that the therapy is working.  I was progressing initially but apparently went into a period of decompensating that seems to be continuing.  I try not to avoid events that might trigger wonky head episodes.  Even at age 71 I'm extremely active.  Probable more so than persons that are in their 30s.

I am SSD to my left side and they severed my vestibular nerve in order to get the tumor out.  The SSD is permanent and my good ear is probably at 50% and declining.  Living with SSD is a real challenge.  You can't tell where sounds are coming from which is dangerous.  Like a car driver honking a warning to you and not having any idea who is honking at you. When in a crowd and someone tries to communicate with you you have no idea who spoke until you locate them by eyesight.  They could be standing right next to you.  I've had someone standing unknowingly behind me and left the room to look for who is calling to me.  It's a real PITA!

The choking is caused by saliva that has built up in the back of my mouth to the point that I aspirate it into my lungs.  With no gag reflex I have no idea that it has built up.  This is severe  choking that can go on for 30 seconds or more.  One doctor has reported that some patients have described it like being water boarded.  It can be a struggle to catch your breath.  There are so many different problems caused by these tumors and so much lack of knowledge by treating doctors.  In their arrogance if they haven't heard about it they blow it off.

All we can do is not loose faith in ourselves and keep plugging away.

jami

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Re: Percentage of patients not imptoving balance
« Reply #6 on: October 06, 2019, 09:59:51 pm »
Hi

I recovered relatively well post surgery, but feel i hit a plateau about 6 months post surgery, and enough PT that they said I was good. More and more i seem to stumble, appear uncoordinated when i walk. I get hard on myself because i *should* be better by now. I am not sure where the 'new normal ' should be.  Would love to hear more from others.

Jami
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

gunns

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Re: Percentage of patients not imptoving balance
« Reply #7 on: October 07, 2019, 11:17:46 am »
Hi Jami,
Looks like you've been having a heck of a time.  We're all different and there doesn't seem to be a common/standard post-op experience.  The doctors are really involved in the beginning but when you need help with issues post-op the loose interest.  The office visits begin to seem like the docs just want to move on to the next patient in the waiting room rather than try to figure out solutions.  Their solutions are limited to what they have used in the past.  If it's not in their "playbook" they don't know what to do and you find yourself on your own.  When I return for a follow-up office visit I'm just a reminder of his failure. I don't mean to sound pessimistic.  To me doctors are no different than other business persons.  They're just like the person who has a garage, store, nursery etc.  You buy something from them and if there are issues they're helpful the first time or two you return for help then the relationship starts to break down.  I was told I'd be much better after the surgery.  Nothing could be further from the truth.  I'm much worse off and it's been a little over two years since the surgery.  But the tumor is gone and I'm thankful for that.

I try to keep my sense of humor and a positive outlook.  I now know if I improve it will be because of my efforts not to give up!  I just keep plugging away and try to find new interests to replace the ones that I can no longer do.  There are constant reminders that it could be a lot worse.  All I need do is turn on the news, go to Home Depot or the grocery store and see people that are a lot worse off.  All we can do is take one day at a time and try to make today better than yesterday.

Keeping in touch with this wonderful web site is very important.  You will see things here that the doctors don't.  These posts won't make it into the medical journals.  You just might find something that will work for you and improve your daily life.  I wish you the best and don't ever, ever give up on yourself!

 


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