Finding a Doctor

[VTRobert]

I had a MRI done about 5 weeks ago, after 6 months of doctor appointments trying to figure out what was happening. The MRI found a 8mm Acoustic Neuroma. My Doctor told me that ww would be a good option for me. After 5 weeks I feel I need to do something. I have very little voice recognition in my left ear, and the ringing is so load I have trouble hearing out of my other ear.  These symptoms are way worse than they were 6 months ago. Sunday morning I woke with Vertigo, it has been 5 days and everything is still spinning! Monday I could walk, and hold down food, and every day I can do more. Before Sunday I never even been dizzy. I am 49, very healthy, but I do not like the idea of getting a operation. I live in Vermont, and I want to go to someone who specializes in acoustic neuroma Radiology, Where do I go?

[VTRobert]

Do I go to NY, NJ, PA? I would really appreciate any reply, everything is still spinning, and I'm frustrated! I want to make a appointment & get things started.

[CHD63]

Hi VTRobert and welcome to this forum!

As you well know, making the decision for where to go for the treatment of your AN is a most daunting task ..... you want to make the right decision and that is scary.

You did not say whether you have sent copies of your MRIs anywhere for evaluation, but there are many places around the country who will give free evaluations.

I believe all of the following will give free evaluations for radiation treatment, but you should contact them to make sure.  This is far from an exhaustive list ..... just a sample of possible doctors with experience in radiating ANs.

http://neurosurgery.med.nyu.edu/about-us/our-team/our-physicians/douglas-kondziolka-md
http://stanfordhospital.org/profiles/Steven_Chang/
http://www.upmc.com/Services/neurosurgery/experts/Pages/l-dade-lunsford.aspx

I think you know that really only you can make the decision on where to go, based on the information from sources/people you trust.

Tell us a little more about your situation.

Thoughts and prayers as you make your way through this process.

Clarice

[VTRobert]

Thanks for replying Clarice. After 2days of research i.m going to have my doctor send all my stuff to Dr Lundford, If they take Anthem Blue cross Blue shield! I still have vertigo, and don't dare go back to work yet. I work in construction, ladders, roofs, power equipment, heavy equipment probably not safe when everything is spinning! I am very active and don't ever sit still until I sleep, so this is frustrating. How long does vertigo last? The medication they gave me doesn't work. Monday I will call for a pt appt.

[CHD63]

Unfortunately it is not possible to say how long the vertigo will last since it varies so tremendously from patient to patient.  You are still pre-treatment so when your AN side vestibular nerve mis-fires, your brain does not know what to do with the mixed signals from the damaged side vs the normal/stable signals from the other side.  The more accurate name for an acoustic neuroma is a vestibular schwannoma because the tumor begins growing on the vestibular nerve, which is a branch of the acoustic nerve.

After treatment, the vestibular nerve on your good side should take over the workload for both.  This can often be accomplished faster through vestibular exercises (walking while turning one's head from side to side and then up and down in a safe environment is a good one).

Remember, I am not a doctor and you need to talk with your doctor(s) about this.  In surgical patients, the surgeons usually sever the vestibular nerve when removing the tumor so that there are no longer erratic signals coming from the damaged nerve.  I really do not know what happens to the vestibular nerve in radiation treatment.  This is something you need to ask your treating doctor.

Best wishes and keep us posted on what Dr. Lunsford says.

Clarice

[cathyroe]

Hi Robert,
About your vertigo ...
I too had a bout with vertigo in February and it was so scary and awful! I talked to two of my docs, and they both said  it was most likely something called Benign Paroxysmal Positional Vertigo or BPPV.
One of my docs explained that the tumor causes changes in the fluid in the inner ear, and crystals come loose and cause this havoc !
He told me to watch some youtube videos on BPPV exercises, which I did. The vertigo cleared up and has not come back.
To view some youtube videos on the exercises, go to this link, or google BPPV and go to videos:

http://www.google.com/#q=bppv&tbm=vid

I hope this helps!
Cathy

[VTRobert]

Thanks Cathy! I went to pt on yesterday and they gave me exercises. It is very encouraging knowing your vertigo went away, I was feeling like mine will never go away! I will be real good about doing my exercises. thanks again