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Tumors on my spine cause alot of terrible pain!Anyone relate??
77grace posted:
I have been in Chronic pain for about 30 years!It started with headaches when I was a teenager,they were horrific,causing vomiting and staying in bed for 3 or 4 days,no food ,just water!
Anyway mthankfully now in my 50's they are better but the tumors cause3 alot of Pain and my Tolerence is bad because of years of meds?The Disese I have is Nuerofribromatosis!Has anyone heard of it or know any new treatments????So far there are none!Surgery is too Risky!
Thanks 77 grace
Peter Abaci, MD responded:
Pain coming from around the spine, from any cause, can be a very challenging problem to manage. Neurofibromatosis is a genetic disorder that causes tumors to grow around nerve tissue. That means that you probably inherited this disease. As this is not a common disease, it may be worthwhile looking for a clinic that specializes in treating neurofibromatosis. In some cases, surgery is considered as an option to relieve pain. It sounds as though your doctors have felt that the surgery would be too risky, and while safety should be a priority, this is a situation where getting a second opinion from a neurosurgeon who has experience with this disorder may be worth considering.

In the meantime, I think you could also use some added support and help in managing your day to day symptoms. Consider consulting with some complementary practitioners, like pain psychologists, acupuncturists, and art therapists as examples, for help. A pain doctor can help sort through some of the medication problems that you may be dealing with.
77grace replied to Peter Abaci, MD's response:
Hi Dr.Peter Abaci,
Thank you for your reply!One thing thats strange for me is that we can't seem to find where it came from! No relatives on either side of my Family so it could have started with me ,I guess or someone had it and it was so slight that they did not know!
Maybe I should look into a Clinic for this,the only one I know of is in L.A. at UCLA!I don't think we have any in San Diego!Art Therapy sounds really interesting and I'm not Talented in that area but sounds Great!Thanks,you have given me the extra push I needed!Its a hard one to deal with!
annette030 replied to 77grace's response:
Hi, Grace

Do what you can to find a center that specializes in this condition.

A friend uses art therapy for an issue she has, and although she doesn't feel like she has any talent, she really enjoys and feels like she gets a lot from this program.

Take care, Annette

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