Confused/ Newbie

[snakebit]

     Well folks,  I have been looking over this site for a day and am ready for some input.  11 months ago I went to the VA with  occasional dissness. Never happened when getting up from lying down, but when driving and getting out to walk in somewhere.  First symptoms were pulsing in my ears and loss of hearing , followed by a pounding pain in my temples, then weak knees and the ground rushing up to meet me .  This happened 2 times in the first month.  Symptoms have changed somewhat over the past 10 months ,  it took 5 months of  falling down ,complaining and severe stress , they were determined it was a blood pressure /heart problem. Finally I did a " Read my lips" with a neurologist , and she said mayb we should do, MRI/MRA to rule out blood vessels in your head.  July/MRI/MRA got a referral to a contract DR with the VA, Sept he allowed we needed to get to doing something.   1/11/06  I finally got to see a real nuero surgeon.
    I have a schwannoma 2.1cm x 1.5 cm on my right inner ear cannal  and  some enlagement of the cavity in the brain where spinal fluid collects.
     Options  put in a shunt to drain fluid and radation to stop the growth,  or surgury to remove the schwannoma  and the fluid should drain on its own in time. His theory being the an is causing thickening of the spinal fluid and the drain passages are so small the fluid drains out very slowly. Thus the dizzyness/ loss of balance.
     I am falling almost daily and am getting pretty beat up. 
     Can anyone relate to these symptoms and does the balance come back after surgury?

                        Jim /Texas

[RadiantStar]

Hi Jim, I'm a fellow Texan too, and former military so I know about the VA, they seem to have their hands full and somewhat stubborn when we tell them somethings wrong with our health.  I am glad you've finally gotten to see a neurosurgeon.   To answer your question about balance, mine is almost normal,(surgery 11/28/05 for 3.5 AN Translab) but as you're no doubt reading the post here, you'll find each individual is different in recovery issues/complications.  What I've seen as common, is patience and the time it takes to heal. 

For balance, I walk a lot.  I also initially did eye exercises post-op for the first week, then balance has returned almost daily.

Don't be discouraged, as my husband often reminds me, it is brain surgery, not a broken fingernail

I hope this helps a bit.  Hang in there, and good luck to you.  You will find a lot of inspiration and encouraging stories here.

Kathleen

[Boppie]

If you opt for surgery...

Yes, Jim the balance comes back after surgery.  It is one thing you can look forward to improving with your own effort and practice.  Right after treatment by surgery you'll notice your gait might be wobbly or crooked, but it improves really fast with practice.  There are home exercises to help you regain coordination between the eyes and balance perception and within a reasonable time for resuming a normal life.    Eventually, the brain figures out that "good side" is going to do the whole balance job for both sides.  You'll be walking, turning around, and climbing steps better and better.   

There is physical therapy for those whose balance is slow to come back. 



 

 

[David707]

Hi Jim,

Here is another Texan (although not a native one).

My case started in September 04.  One day, I woke up in the mid night and found myself very dizzy.  The second day, I lost almost all of my left hearing (the so-called sudden hearing loss).  At the beginning, my PCP from insurance and I were hoping it was stress related and might go away by itself.  A few weeks later, I was diagnosed with AN after seeing an ENT and taking the MRI. 

After a couple of months for searching the treatment options, I decided to have surgery by Dr. Vrabec and Dr. Trask of Baylor college in Houston Methodist Hospital.  The surgery was a big success and my recovery went extremely well.  I am almost back to where I was before the surgery.  It was a given in my case to loss my left side hearing as well as my left side balance nerve.  With my right side balance nerve to do the job for two, my response to big/fast body movements was not quite there, but I have no problem for most of daily activities, including driving.  As Boppie said, practice is the key to regain your balance, which I have not been diligent enough.

One thing I am concerned about your case is that; you seem have not yet seen a doctor "specialized" in AN.  Personally, I think it is extremely important.  A general ENT or a general neurosurgen is not good enough to do the treatment for our cases.  The ENT who diagonsed my AN was a very good ENT in the twon I live, but he did not take the case for tretment.  Instead, he refereed me to Dr. Vrabec, an ENT specialzed in AN. 

If you have been bothered with balance problem already, you have to be more careful in the choice of treatment options.  In my case, my left balance nerve was already partially damaged.  With surgery, it was completely removed and would not ihave the change to nterfere with the good right nerve any more.  I was told this is the prefer outcome to allow the good never have full control.  Should I chose to have Gamma Knife treatment, the partially damaged nerve would still be there and still nterefers with the good one.  My balance would not be improved after the treatment.  This was told to me by one of the doctors while I was searching for treatment options.  Please discuss this with your doctor when you are ready.

There are plenty of us in this forum who had very positive outcomes from the treatments.   Do not hesitate to bring up your questions and needs to this forum.  You will find some firends here are very knowledgeable (I am not one of them) and very supportive.

Good luck and wish you a peaceful mind through the whole event.

David

[snakebit]

   Thanks for the input .  I believe the Dr that is handling my case may be experienced in this type treatment. He said he has done over 320 of these procedures. He is a Harvard Med grad and has been with Soutwest Regional in Dallas for over 10 years in this dept.  The more time I spend lying down the better my balance is.
                                          thanks  Jim

[David707]

Very good Jim. 

I trust your doctor will do a good job.  Good luck and keep us informed.  You will be in my thoughts and prayers.

David

[Sanddollar]

Jim -

As yet another fellow Texan I wish you all the best.  I am on the pre-op side of things, so I don't have a lot of advice about balance recovery just yet.  Perhaps we can swap stories in a few more weeks!  Do let us know how you are doing.

Sanddollar