Balance/Dizziness Problems

[lthompson]

I was diagnosed back in March of 2004 with a 5mm AN.  Symptoms at that time were tinnitus, fullness/pressure in affected ear and dizziness when looking down at the ground.  To date, I have not had any treatment.  I am leaning towards cyberknife or gamma knife, but haven't found the right doctor or facility as of yet.  About a week ago I started to have some more severe balance issues.  In addition to having balance problems when looking down at the ground, nothing appears level to me anymore.  When I sit at my computer it appears to me that one side of my desk is higher than the other and that the objects on my desk are leaning.  The floor appears to slant downwards when I am walking and this is really making me dizzy.  Any suggestions on what to do.  My doctor is hesitant to prescribe any medication, because he doesn't think it will really help.   Anyone else have these problems and what did you do?  Thanks for any information.

[Static]

My beginning symptoms were similar but my dizziness/unbalance was more when I was walking and I sorta would lose my balance all of the sudden and stagger.  Most of my balance problems came after my surgery when I had to use a walker to start off keeping my balance then graduated on to holding on to furniture and the walls.  Now I am doing much better, still walk like a drunk at times, mostly when it's dark, but I think it just takes time until your good side takes hold of the situation and takes over, as best it can, for the bad side.  My AN was a bit larger at 3.5cm and mostly pressing on the brainstem which is why I opted to have it surgically removed.  There was no medication that helped me except for when I had the vertigo and I just used a patch which prevented the vertigo.  I gradually had to move off of that so I didn't become addicted and also because I didin't need it anymore.  Good luck with your decision re: gamma or cyberknife.

[Bob Partak]

I was diagnosed with a 10mmX5mm left sided AN in April "04" and had Cyberknife. Before treatment I had hearing loss (44% word recognition) and tinnitus, but no balance issues. After treatment I had balance issues that have improved greatly, but still I stagger for a step or two and bump a wall now and then. I also tried the scopolamine patch because the balance issue just made me feel nausiated at times. What did work pretty well was a last ditch effort on the part of my radiologist/oncologist who put me on a very low dose of valium (2mg. - 4x's a day). It was used years ago for patients with ear infections with resulting balance issues. Almost immediatly I felt improvement although not 100%. I am now 8 mo.s post CK, still have a mild balance issue and I take the valium once in the AM. I feel pretty good overall, but I do tire easily, lost all word recognition in my affected ear, still have tinnitus, started to get mild facial spasms 7mo.s post CK that last about a min. and occur every few days. The valium dose is low enough not to interfere with my daily functions like driving, etc. I hope this helps. I wish you well, Bob

[kbwright]

When I sit at my computer it appears to me that one side of my desk is higher than the other and that the objects on my desk are leaning.  The floor appears to slant downwards when I am walking and this is really making me dizzy. 


I have the same symptoms of things appearing to not be level. I had a 3mm tumor and had gamma knife on 3-14. Now 2 months out my overall symptoms of dizzyness, terrible balance, confusion all seem to be decreasing. My ENT did prescribe Ativan .5mg (very low dose) for the dizzyness and it really helps. Though it does seem that the medication is not working for as long as it did in the beginning. I started out taking 1 -2 pills a day and now on bad days the doctor has prescribed 3 pills a day (every 8 hours). I do have ringing in my ear, the pitch changes at times. I do not notice any hearing loss. There was some before the gamma knife.  I chooose gamma knife, the procedure seemed more accurate for my situation.

[Russ]

Hi Itthompson!
  4 mm.is a pretty small AN and I can understand why you haven't had treatment. Have you had MRI this year?
  Seems if the AN is not showing an aggressive growth pattern, a visit to the Opthamologist or Neuroopthamologist 'may' be helpful.
  I see another poster reports GK at 3mm. but that is really quite small given the error potential of MRI as + or - 2 mm. I'm glad they are feeling better!!
  Best wishes; Russ

[dee2]

I am so glad this site is available - I really need to know I am not alone in what I'm experiencing. I was diagnosed on 11/04 with a 14x14x19mm tumor. My husband & I did alot of research, spoke to surgeons, as well as radiologist/Oncology.  Opted for the gamma knife, which was done 2/01/05. Before the procedure had major hearing loss (left side), tinitis, as well as balance problems. Right after, hearing still gone, tinitis still there, balance problem subsided. My concern now - 4 months after - the tinitis has worsened, A little confusion,  balance problems is back - mainly when I walk, tend to stagger, bump into walls, not a pretty sight. I don't see my Dr. for a re-check until August. Appreciate any feed back. Thank you for being here.

[kbwright]

I understand your frustration.... I also underwent the gamma knife radiation. My symptoms come and go as they please. I am 3 months out and am having more good days than bad days. Every discussion with the neurosurgeon is the same... he has explained to me many times that 6 to 18 months after the proceedure the tumor will continue reacting to the radiation as it dies off. As these reactions occur the tumor will swell causing the symptoms to increase. I had some significant hearing loss right after the gamma knife and it has cleared up. The tinnitis changes pitch and volume, and I was told that this would not go away. The dizzy spells seem better and my balance seems worse. I have noticed that if I am even slightly congested the symptoms really flare up. I really hate lessons in learning to be more patient! I have slowed down to a crawl compared to my lifestyle prior to this. I have started seeing a physical therapist who specializes in vestibular therapy. She is teaching me better coping skills. Most of the work we are doing is supposed to de-sensitize my body's reaction, and lesson the symptoms. I still want to know what I can do through my diet to help in anyway.  I am still searching for answers....

[odirish]

I had my surgery 10 years ago and I still have a balance problem, mostly in the dark. I used to get severe dizzy spells, but that stopped about 2 or 3 years ago.

Mary Ann