Author Topic: Looking for NF2 educated Neurosurgeon in Dallas  (Read 3185 times)

hgtvqueen

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Looking for NF2 educated Neurosurgeon in Dallas
« on: March 25, 2009, 10:00:41 am »
Hi Everyone -

My daughter is being followed by Dr. Friedman from House and has had two surgeries there.  However, we live in central Texas and have some other NF2 issues that he wouldn't necessisarly cover.  Does anyone know of a good Neurosurgeon in the Dallas area that is familiar with NF2?  The NS we saw here in central Texas yesterday hasn't seen an acoustic neuroma since his residency, much less anyone with NF 2.  She is almost 18, so doesn't have to be pediatric.  Will post on the NF 2 thread as well.

tony

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Re: Looking for NF2 educated Neurosurgeon in Dallas
« Reply #1 on: March 26, 2009, 01:46:19 am »
Sorry I cant offer names here
I wondered if the NF2crew might know someone
(like this group, but 99% NF2 folk)
as you say the condition is rare - so, so is the experiance out there
If you drop me I private note
I can put you in touch
Best regards
Tony

debw

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Re: Looking for NF2 educated Neurosurgeon in Dallas
« Reply #2 on: March 27, 2009, 09:16:17 am »
Dr. Bruce Mickey (neurosurgeon) and Dr. Isaacson (otoneurologist) at UT Southwestern in Dallas.  Not sure about their experience with NF2; however, both work with AN patients - either microsurgery or radiosurgery.  You can find their contact and background info on UT Southwestern website.   Both physicians came highly recommended to me from past patients. 

nitashuhart

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Re: Looking for NF2 educated Neurosurgeon in Dallas
« Reply #3 on: May 02, 2009, 10:57:33 am »
I live in Allen north of Dallas and back in 1996 I consulted with 2 doctors at UT Southwestern Medical but was not satisfied with their recommendations.  Having bilateral acoustic schwannomas I did not want the results of surgery because I know after research that maybe not all the neuroma would be extracted and the facial paralysis/eye problems and deafness was not what I wanted.  I then went to John Hopkins and Dr. Daniele Rigimonte is now the Director of Radiosurgery Dept. and is also a Nruso-surgeon spealizating in the brain.  The doctors in Dalals both wanted to do surgery and said radiosurgery with the FSR/Gamma Knife or Cyberknofe would not do me any good.  Gads - why are all of themn so knife happy?
I had FSR treatment on the right (19 x 12 mm) in Sept. 00 and then FSR treatment on the left (28 x 12 mm) in Sept. 01.  The bad cells have now mostly died and the residuals measure right 9 x 6 mm and the left 12 x 8 mm, so I am plesed.  My hearing in the right finally diminished to 10% and I became a candidate fot the Cochlear Implant.
Again more important I went back to Dr. Peter Roland (UTSW) and Dr. Bob Peters (Cochlear Implant specialist) and they both said it would not help me with my  hearing.  So back to Dr. John Niparko at John Hopkins and the surgery Sept. 06 and I can hear words again with the CI.
IF you want a good physician contact MD Anderson Hospital in Houston because they specilize in all types of brain diseases.  Let me know if I can help further.  Nita Shuhart, Allen Travel Service, Allen, TX 972-727-9196