new member!

[debgit]

Another joins the club! I have recently been diagnosed with a 1.2 cm "component"! Problem is, I'm pretty symptomatic. Significant hearing loss in my left ear, what I call constant "white noise", some dizziness and occasional questionable balance issues. Just had my first consult with doctors at Jackson Memorial in Miami, and to be honest, I would like to stay in the "neighborhood" if possible. Thinking about going up to Shands at the U. of Florida as well. Surgery scares the daylights out of me, but I am under the assumption (right or wrong???) that radiation will not resolve the symptom issue. I know that all will be O.K. but sure would love some ideas......

[Mark]

debgit,

In terms of radiosurgery being an option, certainly size is not a consideration at 1.2 cm which is well below the generally accepted ceiling of 3 cm.

Of the symptoms you list, nothing in particular jumps out as me as something that would prohibit pursuing that option either. Radiosurgery will not solve symptoms that are associated with the physical presence of the AN on a critical structure, typically the cerebellum. At 1.2 cm I would be very surprised if your AN is having that level of physical impact but certainly the MRI would show the doctor what is involved.

Specifically to the symptoms you list

Hearing - What's lost is lost as a result of the damage to the "hairs" on the nerve and the objective of the treatment is to preserve what's left. Radiosurgery typically is a little better here but it doesn't sound like you have much "usable" hearing left

Tinnitus ( white Noise) - this is a reaction of the brain to the damaged nerve. Removing the AN surgically or treating with radiosurgery in all likelihood won't create a significant change in the end.

Balance - This needs to be assessed by a neurosurgeon to determine if the physical location of the AN is the issue, if so, then surgery might be a better option. However, my guess is that this is associated with small shifts in pressure and damage to the balance nerve as the AN is growing. Your body will adjust to this over time when the AN is stable ( dead or removed). I would also guess that dizziness is directly related to the balance / vertigo issue. When that resolves the dizzziness probably will too.

So, from my perspective, both options are equally viable for the symptoms you describe and you could go either way. The one consideration you did not mention because you aren't having any issues is the facial nerve function. Of the two options, I think the studies would show radiosurgery has less risk in this area than open surgery.

As far as staying in your backyard, you might want to consider Dr. Spunberg who runs the Cyberknife facility in West Palm Beach for a radiosurgery consult as you consider your options. He also responds to inquiries on the Cyberknife Patient support board at www.cyberknifesupport.org

His contact and Bio info is

Jerome J. Spunberg, M.D., FACR, FACRO
Radiation Oncology Institute &
Cyberknife Center of Palm Beach

10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410

Email: jspunberg@radiationoncologyinstitute.com
www.radiationoncologyinstitute.com

Phone: (561) 624-1717
Fax: (561) 296-4270

Dr. Spunberg is a board certified radiation oncologist practicing in Palm Beach County, Florida for over twenty years. He is a fellow of both the American College of Radiology and the American College of Radiation Oncologist. He graduated from Harvard Medical School and completed his residency training in radiation oncology at Columbia-Presbyterian Medical Center in New York. Particular interests include the use of Cyberknife in prostate and lung cancer, as well as intracranial and spinal tumors. He is especially excited about combining treatment with the Cyberknife with other therapeutic options such as IMRT and chemotherapy.



Hope that is helpful,

Mark

[macintosh]

 I had radiosurgery at Shands in January. The research that I did indicated that surgery is more likely to produce "side effects" (i.e., more bad symptoms) than radiosurgery. In general, if you come through either treatment with no more symptoms than you had going in, that's a major success.

William Friedman, the head of Neurosurgery at U. Florida, is an  important researcher in the field, and he has an article in the Journal of Neurosurgery, Nov. 2006 reviewing the radiosurgery program at Shands. If you Google <Friedman Journal Neurosurgery>, the second entry will take you to his article and an editorial response.

They use a LINAC machine at Shands, which is slightly less precise than the Cyberknife. Shands has a large and experienced team of doctors, though, and they seemed extremely serious and competent to me. Spunberg in Palm Beach has a very good reputation, too. And he has a Cyberknife.

You can get more primary research at pubmed.gov, or at the University of Pittisburgh website: www.acousticneuroma.neurosurgery.pitt.edu

Mac

[Obita]

Hi debgit:

Welcome to the forum. 

You might want to consider getting at least one radiosurgery consult. You have time to interview doctors until you KNOW which treatment is for you and who should treat you.   

Good luck, Kathy

[Battyp]

hi Degit and welcome but sorry you are joining us!

I consulted with:
Teleschi and Marcos-jackson
Dr. Brem at Moffitt in Tampa (who did my surgery would go there again if had to)
Dr. Antonelli at Shands but couldnt' wait for the 3 months to get my appointment after my other consults
Dr. Friedman same thing.  He used to do surgery but now is big in the cybersurgery field.  I had to apply  to see if I was a candidate for an appointment.
I have heard good things about the cyberknife facility Mark mentioned.

FranS consulted there.
Ceecee is in Tampa and had surgery in Orlando.
Tim is in Tampa and had surgery w/ Vironis at Moffitt ( I met him, talked with him, emailed with him and was impressed with him)
Jeffeh had surgery at tampa General

I think anyone of us would be willing to share the good the bad and the ugly.  I just got home from my two  year follow up..MRI clean, facial numbess but no paralysis.  If you look at me on the street you would not know I had brain surgery.

You want to make sure that who you chose has the experience.  Ana has some great booklets you can email them to have them sent.  Don't be afraid to ask the doctors point blank their success rates.  I asked them all in the last 30 days how many have had facial paralysis.  You are you're best advocate!

Hugs, Michelle

[SteveWWD]

I was very hesitant to go with radio surgery, espcially because it is still fairly new (no more than ten years research on current doses administered).  So even though it isn't out patient and it is invasive, I went with a retrosigmoid approach to surgery.  Total tumor removal, total hearing loss on that side.  Only notice the hearing loss in crowded areas.