Dizzy

[robertb]

First time on the Forum. Needing feedback, wondering if anyone has experienced the symptoms that I have. I am so dizzy all day. From the moment that I get up out of bed my head feels dizzy and I have balance problems. About 5 months ago I started feeling light headed all the time. That really wasn't a bad feeling, as a matter of fact it was quite pleasant at times but was disconcerting when it began to be constant. Then a few months ago I started to get dizzy spells that suddenly took over. At first my doctor said it was probably Benign Positional Vertigo but he finally paid attention when I couldn't walk a straight line. Then a hearing test followed with an MRI thereafter. Now if I do anything strenuous, my dizzy gets too heavy to handle and my head feels horrible and cloudy,as though it was full of mush, then I get accompanying stress headaches. I can manage getting through the day now by not doing anything strenuous. I used to surf every morning that the wind and swell was favorable, at least 4 times a week, now I have trouble walking. My AN is only 11mmx6mmx5mm. The amazing thing is that when I lay down and once my mush settles, I almost feel like I''m on a dreamy narcotic. I can lay down and sleep all day. My hearing is bad in my affected ear but I didn't realize how bad because I already wore a hearing aid and when the hearing aid stopped being effective, I just ignored it because my good ear was adequate. Like many others, my tinnitus is insanely bad. My ENT doc suggested to 'watch and wait' because my tumor is relatively small but is going to try a treatment called a Chemical Labyrinthectomy tomorrow to try and disable my balance nerve on the tumor side. I really just want this tumor taken out but I'll definitely settle for getting my life back for now. Has anyone experienced these symptoms? Gone through a Chemical Labrinthectomy? Any advice would be appreciated. Thanks for taking the time to read my story. Robertb

[Jim Scott]

Hi, Robert - and welcome.  Although I'm sorry you've developed an acoustic neuroma, I'm glad you discovered the ANA website and decided to join the discussion forums.

Unfortunately, sometimes the smallest ANs present the biggest problems, as it has in your case.  Your symptoms seem to be debilitating and I hope the chemical Labyrinthectomy procedure will alleviate them.  I'm sure it will help lessen the dizziness.  Tumor removal or radiation will be a more permanent option - but one step at a time.  You have my best wishes for a successful outcome to the upcoming chemical labyrinthectomy procedure. 

Jim

[Chances3]

Hi Robert,

Like Jim has mentioned, sorry to read your story, but you have come to the right place to share and learn from others.  Let me tell you a little about my experience to help you with some of your decisions.  I had a small AN growing on my 8Th cranial nerve very deep inside my head near my brain stem.  My symptoms were full vertigo attacks.  I would go into complete spins, they would last 1-3 minutes, every few days. My attacks became more frequent, that lead me to ENT, MRI and in a short time I chose surgery.  Because my tumor was small, I chose the middle fossa approach to try and save my hearing.  The hearing works, although the sound is somewhat muffled.  The surgeons also severed my vestibular nerve in the hope of stopping the vertigo attacks.  ( Vestibular nerve is the balance nerve).  It took me a very very long time to recover, and to get that dizzy, wonky feeling out of me.  What I was told, the tumor was small, therefore your brain hasn't had a lot of time to compensate.  It took me two years to feel the changes to the symptoms I have mentioned, and the ones you have described.  I too have a terrible ring ( Tinnitus).

I don't know much about your procedure, but here is what I can say that you could do now to help yourself.  Get on a diuretic.  Stay away from sulfides, nitrites, MSG, processed meats like cold cuts and beacon.  Stay away from caffeine and alcohol.  Try to get quality sleep, and ask your doctors about taking some vestibular therapy.

I hear your pain Robert, it's no fun, but you have to seek out all the help you can, and work on making some progress.  Continue to access this site, there are many here who have some sound experiences to share.  I'm sorry for the long post, I hope it helps.

God Bless,

Bob

[millie]

I sympathize with how you are feeling-the feeling of fullness in the head and the sense of being "dizzy" or lightheaded is something I live with too.  Like you, I have thought  it could be a pleasant feeling-if it only lasted a little while!  Thank you for verbalizing my thoughts lately.  I am in the process of healing after surgery.   I am hopeful that this  will improve but I have been told it takes time.
I wish you the best with your procedure. Stay strong.

[kejac]

Hello, your tumor is about the same size as mine. 10mm-5mm left side in my inner auditory canal. Before it was discovered I worked alot of hours and worked out 4 days a week. I would get dizzy and my face would get numb from jaw to temple (AN side) even have a slurred speech. Ive stopped working so many hours and have stopped working out and the symptoms have lessened. After MRI August this year was prescibed steroids and motion sickness meds, which i havent taken any, yet. Was told to come back in 6 months.
My advice would be to educate yourself as much as possible. Find out about different techniques for removal and or radiaton treatment and what you can do while watch and wait, all of which im still learning. I have taken the advice from the people on this forum board and have sent my MRI to the House Ear Clinic for an evaluation. Im not sure where your located but the evaluation is free and they are very quick about getting back to you with a detailed explanation of where your tumor is and what your options are. http://www.houseearclinic.com/

kejac

[nftwoed]

Hi Roberb;

  I see you haven't posted here since your chemical VNS, or, the first in a series of 3.
  Also, a very important problem remains, a small intracanicular AN.
  And the ENT didn't talk about radiation or a Mid Cranial Fossa surgery where balance might be spared?
  I'm looking forward to reading your outcome. Best wishes always!

[leapyrtwins]

As Jim said (in different words), sometimes small ANs cause big problems and sometimes big ANs cause small (or minimal) problems.

Watch and wait is great unless the symptoms are debillitating - at which point it's generally a good idea to have treatment.

Jan