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Forum needed
by Esplanade, Mar 12, 2009 08:55PM
Looking for support forum that actually replies to questions, concerns. I am so tired of reading, the old stand by "the genetics of NF1 or NF2. or what they look like. Most articles are directed at pedicatrics. I am middle age and need info directed at the aging population.
I don't need to know about the genetics or to be tested. I have that information. I need to know specifics. When surgery is indicated. What about outcomes of surgery, can partial surgery be done. The difference between the types of tumors and can mistakes be made.Does it make a difference for tumor type. I know it matters of where the tumors are.
I have contacted two different organizations for NF without replies. I would like support from people in the same situation. Any ideas?
This discussion is related to Difference between Schwannoma vs. Neurofibroma on Spinal Cord.
I don't need to know about the genetics or to be tested. I have that information. I need to know specifics. When surgery is indicated. What about outcomes of surgery, can partial surgery be done. The difference between the types of tumors and can mistakes be made.Does it make a difference for tumor type. I know it matters of where the tumors are.
I have contacted two different organizations for NF without replies. I would like support from people in the same situation. Any ideas?
This discussion is related to Difference between Schwannoma vs. Neurofibroma on Spinal Cord.
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The best, and infact the only way to get specific answers to specific questions that you have is not to approach a forum, but to approach a doctor who specialises in the disease that you have. Medicine is not guess work based on information that you supply in a forum, but is a science, where examination of the patient is essential for specific answers to be given. If you post a question in a forum, you will only be able to get general answers, because of the very fact that the person answering the question cannot see you and then make an assessment. Questions like when a surgery can be performed also will necessitate that you visit a specialist. Else, you may find answers and probably start a support group/ forum yourself, so that others in your condition do not go through your anxiety. After all, someone has to take the first step.
Regards