Neurologist in New York City (or elsewhere)

[SIDBAR]

I have recently discovered 2 cm AN and am on a watchful waiting program. It has been suggested that if the AN increases in size then Gamma Knife surgery should be employed.

Recommendations or comments regarding specific experiences with specific doctors in New York City will be most welcome. (I would also welcome comments regarding other areas, travel expenses not being a major concern.) Are there neurologists well experienced with AN who are not also surgeons? Any comments regarding which doctor to visit for analysis and for treatment? Any thoughts or experiences pertaining to Gamma Knife surgery?  Is this this type of surgery just a piece of cake - back to normal the next day?

Comments, help, will be greatly appreciated.

[russ]

Hi
http://www.irsa.org/ ( See, "Centers of Excellence" ) Treatment is never a "piece of cake". Why the GK recommendation? Was there no microsurgical discussion or opinion or did you only see a radiosurgeon? That being the case, you have a biased opinion.
  Never heard of a Neurologist being a main consult in AN situations. An Otolargynologist, yes; ENT, Neurotologist, Neurosurgeon, Radiation-Oncologist, but not Neurologist.
  Best wishes on a couple good opinions of both radiation in it's variety of forms and surgery.
  Russ

[Goldineye]

Hi Sidbar, What docters did you see in New York City? I had my 3.5 tumer out there.From my understanding I thought they couldn't do Gamma knife if the tumer was 2cm or more. Just curious to which docters you consulted with. Goldineye

[tclark]

Hi Sidbar,
     I was faced with a decision concerning a 1.9 cm AN.  The ENT specialist did not recommend the wait and watch.  He referred me both to a neurosurgeon who specializes in ANs and a physician who specializes in the gamma knife procedure.  Both were at UPMC Presbyterian.  I spent time with the neurosurgeon, whom, after reviewing my MRI films, told me that he could remove the tumor with relatively few side affects, however told me that if I were his wife, he would recommend having the gamma knife procedure.  That spoke volumes to me.  I then met with the gamma knife specialist.  He scheduled me for the procedure which I had done about 2 weeks ago.  He is very confident (98% so) that they were able to halt the growth of the tumor.  The procedure was relatively uneventful (I am quite surprised about this).  I was in the hospital for about 6 hours.  I felt a little tired that weekend and had a bit of a headache from the head frame device.  But all in all, I feel I made the absolute right choice for me.  NO ONE can tell you what is best for you.  You can gather all of the facts and the decision you make has to be yours alone.  I knew that I could not handle the possible side effects from the surgery (I have 4 small children, all under the age of 6) and I couldn't imagine not being there 100% for them. 

Hope this helps.  Good luck in  your decision making.  If you are looking for second opinions, I would highly recommend the UPMC Presbyterian system in Pittsburgh Pennsylvania.  Dr. Kassam (neurosurgeon) and Dr. Lunsford (gamma knife specialist) were wonderful to work with.  I felt I had straight up answers from them.  They are very experienced in the treatment of acoustic neuromas.  Again good luck. 

[ljedwards]

Hi Sidbar, What docters did you see in New York City? I had my 3.5 tumer out there.From my understanding I thought they couldn't do Gamma knife if the tumer was 2cm or more. Just curious to which docters you consulted with. Goldineye

Most tumor sizes I've seen as top limits for radiation are over 3.0 cm.  3.5 to 4.0 might be pretty iffy for radiation.

Jeanne

[Becky]

I do not recommend dr kassam.  I was in surgery 11 hours, and have many post-operative problems.  His suggestion to me about my post-operative physical problems was to mandate psychiatry.  Last I knew he is not even a U.S. citizen. 

Also, in response to citing some research I had done on my symptoms, dr kassam informed me that there is a group working on keeping medical information on the web away from non-medical people.  He said non-medical people should not have access to medical info on the internet.  So keep that in mind as you check in here at the Forum and search for medical info here on the web..

[ppearl214]

Hi Sidbar. Phyl in Boston here... great programs here and in "watch/wait" mode as well, although, this week moving forward.

If Boston isn't an issue for you, I've got the following info for you.

Dr. Peter Black, Chief of Brain Tumor and Neurosurgery, Brigham/Woman's and Harvard Med. Have confirmed he does micro-surgery on approx 50 AN's per year (his handpicked protoge, Dr. Eliz Claus is my Neurosurgeon). Brigham Woman's has the Novalis Radiosurgery (not thrilled on it but meeting with their team next week)

Beth Israel Hospital has  Cyberknife Radiosurgery. Meeting with them next Monday. FAB team and program from all professionals I have consulted with

Tufts Medical has the gamma knife

Mass General Hosp has the Proton radiosurgery.

So, as you can see, there are MANY options here in Boston, all centrally located and heck, lobster season is on. If you need further info or links to these programs just send me an email here.  Glad to help.

Phyllis