I am in W&W and have developed balance issues

[kimbo]

Hi

I have been in W&W since Oct 2008 and have been going quite well with a 13mm R AN, mod-severe hearing loss and tinnitus and I felt pretty good until recently.  I went for my annual review and was told that there hasn't been any growth but 6 weeks later I woke up and discovered I had difficulty walking and I felt very unsteady with mild nausea.  This lasted for 3 days, I couldn't drive a car and I only felt comfortable lying down but since then the balance has improved but it is still way off compared to before.  I cant stand still without swaying, I fall to the left if I stand with knees and feet together and I can't walk toe/heel without loosing my balance.  I went to the specialist and he feels I have had a small bleed in or around the tumour to cause such a dramatic change in my balance system and is going to monitor it over the next 2 months; he says I might need treatment.  I am a little disappointed as I was going so well but I am wondering how many W&W experience balance issues pre treatment and has anybody found that it can get better again.

Thanks


Kim

 

[kenneth_k]

Hi Kim.

I had several dizziness episodes that didn't disappear before surgery (a period of 1½ year).

In theory, the tumor will destroy the balance nerve at some stage, and then the other balance nerve takes over completely and the dizziness feeling should be reduced considerably.

However, nobody will be able to tell you for sure, how long this process will take.

Best regards, Kenneth

[TJ]

Kim

My AN on the right side was found about the same time as yours.  I was in W&W until last November.  Yes, before I had treatment by balance started to be an issue.  That is when my doctor did another MRI and found that the AN doubled in size in 6 months.  So with the AN at 1cm I had CyberKnife Radio Surgery in November, I had 5 sessions.  I was told by my the doctor that once your balance issues start you never regain what is lost.  I know people in our local support group that had surgery and still have balance issues. The hope of CyberKife was to stop the growth and keep my balance where it is.

Best of luck with your journey

TJ

[kimbo]

Thanks Kenneth and TJ for your posts.  I will be visiting a second specialist in Sydney next week as my balance has worsened to a stagger when I walk; my first specialist believes I should have surgery.  I will have to wait and see.

Kim

[sunfish]

True that you don't regain balance capabilities once you've lost them, in terms of a damaged nerve is a damaged nerve.  But I disagree in general - most folks will compensate for their losses - your "good" side will pick up for your "bad" side.  I'm just now getting lots of my balance back, but it took 14 months.

[Mickey]

Hi Kimbo! I can relate to what your saying. My AN is approx. same size as yours and I have been W+W goin into my 4th year. During this course of time I have had some on if I was getting dizzy. We have to remember that we do have a little something in the area where anything like a cold, allergies, change of weather, etc. will effect us more than the average person. What I`ve done is to allways stay as healthy as possible thru supplements and exercise and moreso when I`ve felt a touch of any change. Iv`e always returned to my "normal". Most important to me is what the MRI says every year with "stable" being my magic word. Best wishes, Mickey

[Rivergirl]

I am in watch and wait and my balance was very bad a couple of years ago, fell all the time  but now my other side has compensated and along with that more importantly I learned what I can do and can't.  You use so many other body systems to balance like sight, hearing, muscles so it can get better and I hope yours does.

[LisaP]

Hi,

Just celebrated my 3rd anniversary (March 31st) since my dx.  April 4th is 3 years I also quit smoking.  I like many w&w's have daily symptoms.  Just trying to cope like the rest.  Hang in there.

LisaP

[kimbo]

Thanks for all your posts

I visited the specialist on Monday and he was very concerned with the sudden deterioration and severity of my balance issues as I am now walking with a stick to support me.  The specialist was concerned that i might of developed Hydrocephalus but over 2 days and a serious of tests he has ruled out that problem.  He has suggested Trans Lab surgery and I will receive a surgery date in the next few weeks.  He is confident that he will be able to correct my balance issues as they are today.  I have considered radiotherapy and at this stage that is not for me. 

Thanks for your well wishes and trust me I enjoyed being in the Wait and Watch Brigade while it lasted.

Kimbo.

[nftwoed]

Kimbo;

  I'm sorry to read you situation, but, at the same time wonder at your saying you have but "mod-severe hearing loss" and will be undergoing Translab which will completely deafen that ear.
  Not sure the tumor size, or your age, but please be sure you are willing to accept the risk of one sided hearing for many years depending how old you are now.
  Maybe you know 6% of those with one AN go on to develop NF-2.
  The physician cannot be positive of the inside of your skull w/o visualization of it. This, despite many tests. A bleed would show on MRI.
  I guess you're at peace with the complete destruction of the ear?
  There does remain in many cases, Retro-Sigmoid, or Middle Fossa. You say radiation is out. Why?

[leapyrtwins]

Lots of people watch & wait until they encounter new symptoms or until the symptoms they are experiencing get worse.

I had balance issues pre-op that got worse post-op, but generally after surgery your body learns to compensate and adjusts itself.

I still have the occasional (slight) balance issue usually when I'm stressed or tired, but all in all my balance is better than it was before my surgery.

Jan

[TELiner]

My AN was dx 3 years ago. I had severe vertigo at that time.  One spell was severe.  I stayed in bed for 3 days because the room wouldn't stop spinning.  My doctor prescribed klonopin.  That stopped the vertigo.  I took klonopin for one year.  The Dr. said I should get off of it after a year because it could become addictive.  I was afraid to stop taking it, but I felt I had to.  I stopped taking it and I haven't had a spell of balance in two years.  My AN is 5 mm and hasn't grown in the past year.

TELiner

[LisaP]

Hi TELiner

Great to hear that your AN has not grown, since I started having MRI's three years ago, my AN has not grown either.  I still have daily symptoms, if I am really tired I usually do not feel well, also this spring my allergies feel worse.

Best wishes,

LisaP