Gamma Knife and balance afterwards

[nyartist]

My girlfriend has a 1 cm AN and has been visiting with some of the finest surgeons and radio-surgeons in the NYC area including Golfinos, Selesnick, Kalman Post and others. She's had two MRI's as the results were a little difficult to discern on the first one. Anyway, she's down to 50% hearing in the left ear and is having some balance issues. Not bad ones though but enough to affect quality of life. We've heard conflicting reports of what happens to your balance problems after GK and surgical techniques. Can anyone share their experiences of having the GK treatment and if there were any changes in the balance after the procedures? Was your balance better after? worse? the same?

[Sefra22]

Hi NYArtist,
I had GK last year.
I did not notice that I had any balance issues at all before treatment, however during my exam with Dr. Noren I discovered that in fact my balance was compromised. I am only aware of my diminished balance occassionally. Mostly when I am going upstairs, or once in a while if I am a passenger in a car, I will wobble a little when I first get out of the vehicle. In both instances, the feeling only lasts seconds. Oh, yeah and I do have to sit down to put my pants on. Sometimes I forget, and will start to tip when I lift one leg off the floor. 

A few months after treatment, I started having vertigo on rare occasions. I find that it happens when walk on uneven surfaces like cobblestones or snow. If there is a wall or something for me to hold onto, I am fine, but if I am carrying groceries into my house, and I forget to stop and touch the rail, the world will start spinning.

When I spoke to my doctor about it, he assured me that it is the tumor itself causing the problems. He said I would have these issues whether or not I had been treated with GK because the tumor is compressing the balance nerve.

I hope this helps. If you have anymore questions about GK, let me know.

Lisa

[SusanT]

Hi !
I had GK in June 2007. Before GK, I didn't have any trouble with balance or facial issues for that matter. Three months after GK, my facial function on the AN side went to nothing and my balance function became much worse. It's now been 6 months....I am getting vestibular rehab and facial rehab. I have good days and days that I want the world to stop. I personally think that the GK made my balance/vertigo issues worse, but who knows what to think with these crazy tumors. Hope this helps.
Susan

[Jimbo]

Hi,

I had GK on my 7 x 12mm AN at Columbia Presb 3 weeks ago, with no follow-up symptoms except for a mild headache 3 days later. Have continued all normal activities.
However, this past weekend, I awoke at 3AM with imbalance. Took some Tylenol, which seemed to help, and ate a good meal. The next night symptoms were worse, with extreme imbalance and seeing double. Called Columbia the next day, and they recommended taking Ibuprofen (Motrin, Advil, etc) which they had found to be quite effective anti-inflammatory, vs Tylenol, which is not. They also suggested I call Dr Panullo at Weill-Cornell if I needed a prescription for steroids, if ibuprofen wasn't effective enough. The ibuprofen helped considerably, but I was still not 100%, so now taking (3rd day) of a 5-day regimen of dexamethazone. It has helped greatly, and now feel I can resume all activities - went to the gym today, etc. Will follow-up next week, to see if it needs to be continued, as we are flying overseas on vacation next week. Only side effect of the steroid is difficulty sleeping.

The good news is that they said the imbalance is a sign that the tumor is dying, after the radiation treatment.

[Omaschwannoma]

I just read your post regarding your girlfriend and wanted to give you information I received from doctors before I chose my form of treatment.  You can see my "stats" below and at the time of talking with a neurosurgeon who performs not only surgery, but fractionated stereotactic radiotherapy, I was having much trouble with my balance.  As a matter of fact my troubles with balance began 12 years prior to diagnosis.  My facial nerve and hearing nerve were becoming compromised at the time I saw this neurosurgeon.  I was told the tumor is compressing  my balance nerve and because of this it is sending weird signals to my brain.  The two balance nerves were fighting one another and this problem would not get better and might even become a little worse with radiotherapy.  Given I was having difficulty to the point of making daily living and moving about a chore, along with the other issues of hearing and facial nerve involvement with no real hope of improvement in those areas I chose microsurgery.  They cut away the balance nerve on the one side so it stops sending weird signals and the brain being plastic, adjusts over time.  The hearing and facial issues would resolve themselves too, unfortunately this was not the case for my hearing.  According to my neurotologist I should not have had the troubles I did post surgery with balance and oscillopsia, as all his other patients do very well to this day.  Had I not been so "special" I could've been one of those spouting off about how great they feel post surgery, I am one of those "spouters" now after my second surgery! 

I will tell you this, now doctors are findng more and more people having difficulty with balance after radiotherapy and have come up with a treatment plan of gentamicyn injections into the inner ear to "kill" the balance nerve without damaging the hearing nerve.  You might want her to look into this if she has difficulty post radiation therapy.  Good luck I hope what I've told you gives you some place to start in asking doctors about post treatment symptoms. 

[GRACE1]

I did not have any serious balance issues before or after GK.  Sometimes I do get a very little bit off-balance, but either it is not so bad or I am jus used to it.