Author Topic: Balance nerve removed  (Read 9263 times)

BarbaraH

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Balance nerve removed
« on: October 18, 2011, 03:00:03 pm »
It has been eight months since my surgery. My right balance nerve was removed. My balance is still not real good. The doctors tell me I'm as good as I'm going to get. I also have developed headaches that come on serve about twice a day. It feels like someone hit me in the back of my head. I would like to hear from anyone who has had their balance nerve removed. Thanks

Jim Scott

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Re: Balance nerve removed
« Reply #1 on: October 18, 2011, 04:15:29 pm »
Hi, Barbara ~

Most AN surgery patients have their balance nerve removed because the tumor is part of the sheathing for that nerve and it's removal is almost unavoidable.  Your doctors seem to be a bit too pessimistic.  With some training and work, the majority of AN patients regain a reasonable degree of balance.  I did.  The headaches can be from a variety of sources but the removal of the balance nerve on one side is usually not the cause of headaches.  However, that is a medical question - and I'm not a doctor so I'm afraid that my response is only speculation....and I could be mistaken.  I'm sure you'll receive more replies to your query that may be more helpful.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

skamper

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Re: Balance nerve removed
« Reply #2 on: October 18, 2011, 04:54:11 pm »
I had no balance left before going in for surgery.  I somehow compensated over time and still go off balance from time to time.  I do horrible in the dark or on uneven ground.  I pretty much have 0 balance on the right side since surgery.
I also suffer from the headaches, I am a 18 months post op.  Somedays I get hit so hard with them, I can't see straight.  It takes everything I have just to be able to get somewhere to lay down.  Ice packs seem to help the most.  But when it's a full blown up the back of neck and into my surgical site, it's awful.  Doctor's have never really given me an answers as to why I get them.  Just say it's part of the healing.  I thought I would get better after surgery and the headaches are almost worse.
Sorry I didn't have more of an answer.
Good luck
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

BarbaraH

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Re: Balance nerve removed
« Reply #3 on: October 19, 2011, 10:11:42 am »
Thanks Jim & Susan. Susan it sounds like we have alot in common. My headaches started to get more severe about 3 months after surgery. One neurologist thinks it is nerve damage. It amazes me how bad the headaches can get in such a short time. I use a ice pack and ibuprofen to help get thru them. My balance is also bad at night and on uneven ground. I have tried therapy, acupuncture, chiropractor, muscle relaxers. I was hoping thing would get better with time. I have always worked, but with the headaches, balance & hearing issues I don't know that it's possible. I also find that I get tired easier than before. I'm going to a new neurologist in a few weeks so maybe she can help.

BarbaraH

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Re: Balance nerve removed
« Reply #4 on: October 19, 2011, 10:14:35 am »
Sorry Skamper I don't know why I wrote susan.

Chances3

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Re: Balance nerve removed
« Reply #5 on: October 19, 2011, 10:51:42 am »
Hi Barbara,

I had my vestibular nerve on the tumor side severed.  It's taken me a very very long time to recover.  It took 10 months before my visual world and my senses started to feel normal.  Vestibular therapy is helpful.  I saw a link on this site for help on balance, it's very helpful to read it.  My doctor has told me that I can continue to recover ( almost a year now ), so I stay optimistic.  I used to run a lot, but running is a visual challenge. Hang in there and keep pushing.

Syl

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Re: Balance nerve removed
« Reply #6 on: October 19, 2011, 12:14:49 pm »
Barbara:

I had surgery 3 yrs ago &, I also had my balance nerve removed. It took me about 2 years before I turned off all the lights at night. I used to feel so off balance in the dark anywhere, even around my house. I always left a night light on, but not anymore. I can make my way around the house in the dark just fine.

Driving can also be challenging sometimes, especially when looking from left to right before making a left turn. That too has gotten better. I noticed that improvement around the 3 year mark.

I also get headaches. Mine began around 3 weeks after surgery. I'll never forget that first one. I was out shopping at Target when the headache just hit me without warning. One minute I was fine, the next I was in extreme pain. I had to rush to get some Tylenol & go home. I was in tears pretty soon.

That was the beginning of my chronic headaches. I was getting them almost daily. Sometimes more than once per day. Fortunately, the headache frequency has subsided. I still get them often, but they are not as painful & rarely of the debilitating type.

I always have Tylenol handy to take when I'm out & about if I should get a headache. The headaches that I get most often are the ones that strike early in the morning. Most often they go away on their own. If they don't, then I go sit on my recliner where I keep my heating pad plugged in at night. If that doesn't work, then I take Tylenol.

I try to keep my med consumption to a minimum because I found out early on in dealing with my headaches that meds lead to rebound headaches. I had to get an Rx to get me off my Tylenol dependence. I was taking 3000mg of Tylenol daily. It's not good for the liver or kidneys.

I too felt that it would be difficult to continue working with the balance, hearing & headache issues. I took it one day at a time. At times I have felt that I would never get better, that my head would never feel clear & connected to my body. But it does get better, even after 3 years.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

james e

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Re: Balance nerve removed
« Reply #7 on: October 19, 2011, 12:49:24 pm »
I had a translab 18 months ago, started PT right after the surgery, and after about 2 months, was told I was no longer making progress, so I  stopped the therapy. I gave up my bicycle, sold all of my wood working tools (still have 10 fingers) and life continues as usual. I am wonky 24/7 but have gotten used to it. I lift weights every day, and I am very strong (62 years old) and my great physical condition keeps me from falling over. Some people may think I have been drinking, but I catch myself when I stagger. I don't stagger very much, but it is very apparent when I do. I  still cannot walk in the dark, and keep a flash light next to my bed.

I do not have headaches. What type of surgery did you have?

Did you take any PT? If not, then you need start right away.

James

Cheryl R

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Re: Balance nerve removed
« Reply #8 on: October 19, 2011, 01:00:50 pm »
James, did you do physical therapy or vestibular therapy?     There is a difference.      My surgeon told me that one can be very good with balance in time post op but the dark will always affect you.             I would even try and see another therapist if it is possible for you.               
                                                  Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

james e

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Re: Balance nerve removed
« Reply #9 on: October 20, 2011, 11:54:33 am »
I took vestibular therapy. It made a big difference and I am glad I did it.  I have seen posts here where some people have no wonky behavior post surgery, and mine just did not work out that way. I am sure you have seen some of my posts...I just brush off the dirt and keep on playing. My wonkyness might go away one day, but I doubt it, and I don't loose any sleep over it.

I'm still interested what type of surgery BarbaraH had. Has anyone ever had headaches from a translab?

cherrypiper

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Re: Balance nerve removed
« Reply #10 on: November 13, 2011, 08:18:09 pm »
well my balance is pretty well shot most nites and the more tired i get at work , the more i lean to the left. My AN was on the rt side.

As previously mentioned in here , nite is worse for the simple reason that your eyes can help the brain with the lack of your AN ears balance.

when it gets dark, this doesn't work so good. At least for me that's true. I am much more prone to run into walls and furniture at nite.

And Nite driving is no longer on freeways here In Houston. i take smaller venue back roads .
10 mm x 2.4mm surgery date 12/03/07

glad to be here

BarbaraH

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Re: Balance nerve removed
« Reply #11 on: August 20, 2012, 08:57:39 am »
 :( It has been 18 months since my AN has been removed. I 'm still having headaches everyday. My Dr. said I have nerve damage from the surgery. I have tried 6 different meds. Most didn't help or the side effects was worse than the headaches. The nerve block didn't work either. My head is still swimming and my balance is bad if I don't concentrate. Having to concentrate with every move to stay balance is wearing on me physically and mentally. Before surgery I loved to drive now it is so tiring. My life is so different since surgery. Does anyone have any suggestions on what i should try next?

LakeErie

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Re: Balance nerve removed
« Reply #12 on: August 20, 2012, 11:45:41 am »
Hi, and sorry about your post surgery problems. It was asked previously in the thread, what surgical approach did you have? For instance, retrosigmoid approach can result in occipital nerve injury that results in headache syndrome. Google Dr Ducic and occipital nerve injury for some information and how he can treat it. Don't know if that is your problem or not, but it is a start. There are other causes of AN surgery related headaches as well, but you have to look for them. Not every doctor will be fully informed on these subjects, so it requires some effort. Good luck.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Janet

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Re: Balance nerve removed
« Reply #13 on: August 20, 2012, 05:25:54 pm »
I had horrible headaches that greatly affected my quality of life. My occipital nerve was damaged from the AN surgery. Dr Ducic fixed it. You'd think the neurosurgeons would know how to fix the occipital nerve but it is not what they do. This falls into the specialty of peripheral nerve surgeons. Dr Ducic has taken an interest in post surgical AN patients. I have his research paper but can't figure out how to attach to my post. If you private message me with your email, I would be happy to send it to whomever wants to read it.
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

reg

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Re: Balance nerve removed
« Reply #14 on: August 21, 2012, 04:52:11 pm »
 :'(i had the retro method in dec 06 (a very difficult surgery hospitalized nearly 80 days) so i can sympothize with you on this matter. i too, am reeling after nearly six years but i walk five days a week three miles per day, his was and still is a great challenge but i do it, i say that to make a point that we all are different and get fustrated but keep on pushing on.  i try to figure out why but to no avail but this is a great medium as i got some new information to day that im going to research on this thread so you never know, so keep on keeping on and god bless
4.5 cm retro surgical removal dec 06