Question Title: 3rd Inquiry - Sara's Neurofibromatosis

Forum: Neurology Forum
Topic: Neurofibromatosis

Posted by ccf neuro M.D.* on September 13, 1997 at 15:00:40:

In Reply to: 3rd Inquiry - Sara's Neurofibromatosis posted by Ann Larkins on September 02, 1997 at 20:45:26:

I really don't want to be pushy, especially since I am asking for free medical advice your center is so graciously offering. However, upon posting a couple of times (8/23 & 8/26) and seeing many responses for items posted after mine, I am wondering if I've asked the wrong type of question or posted it in the wrong sort of way. Maybe you could let me know whether or not you can see my question. If you can, and are still working on the answer, I can certainly be patient longer. You offer a wonderful aid to families in search of answers. Please do not think of this as a complaint.

Basically, my daughter has NF tumors inside her body just off her spine in several places. I ask in my 2 questions (after providing more background info) whether or not you think I should consult a surgeon about the gamma knife surgery. NOW, upon reading more entries on this & 2 other med sites about the gamma knife, my only remaining question is where is the nearest center to me? (I'm near Atlanta, GA.)

Thanks very much.

Regards, Ann Larkins
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Ann,

Very sorry about your question not getting promptly answered. You "slipped through the cracks" somehow. I do not see the 8/23 posting, but see we did miss the 8/26 posting. I'm going to suggest that you contact our gamma knife administrator directly to discuss the experience of the gamma knife in the use of therapy for neurfibromas. Generally use of the device is restricted to tumors in the brain and head, but a couple of our neurosurgeons have pioneered use of a different "stereotactic" system that allows precise computer-assisted surgery of delicate spinal cord and brain tumors. The Cleveland Clinic's phone number is 1-800-223-2273; ask to be connected to the gamma knife center; you can speak to Jim Walsh, our gamma knife nurse clinician, who can in turn discuss your specific question with Dr. Gene Barnett, the center's director who is most knowledgable about its uses. Dr. Barnett also is most experienced with the use of the stereotactic computer-assisted system, although Dr. Kalfas, our spinal neurosurgeon, has also been greatly involved in expanding the use of the technology to spinal cord tumors. If felt appropriate, he could also refer you to the nearest gamma knife center or spinal neurosurgeon to you, most likely at Emory. Again, we apoligize for the delay in answering.

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