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I have NF1 and have a spinal cord tumor - tumour_support [entries|archive|friends|userinfo]
Brain and spine tumour support

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I have NF1 and have a spinal cord tumor [Nov. 3rd, 2005|02:52 pm]
Brain and spine tumour support


I have NF1 and had (some still remains) a large tumor removed from my spinal cord from C4 to C6. Extremely complicated surgery - took 12 hours. Three days after that I had a cerebral hemmorage as a result of the spinal cord surgery itself, and for that, I had 8 hours of brain surgery.

Some of the tumor still remains, and as long as it remains dormant, they will not remove any more of it, as the surgery itself is too dangerous (obviously... it nearly killed me).

My symptoms before the surgery left me misdiagnosed - FibroMyalgia and Carpal Tunnel Syndrome. Then, the symptoms became even worse - my doctor thought I might have MS. But a trip to a neurologist, and MRI, and a neurosurgeon ruled out the FibroMyalgia, Carpal Tunnel, and MS. I had a huge tumor on my spinal cord and it was entangled in my brachial plexus nerves.

Spinal cords are not that common. But people with NF, such as myself do get them there.

I'm hoping to speak with other people with experiences as mine. From what I understand, people who've had my type of surgery usually have bad after effects - paralysis, etc. I'd like to 'compare notes' so to speak.

This community shows no activity. Hopefully this will give someone incentive to post here as well.

From: jade_green_
2005-11-06 12:03 pm (UTC)
Hi there, your experience sounds terrible, i don't know that much about NF myself, do you have regular MRI scans to keep an eye on things?
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[User Picture]From: seamowse
2006-04-12 11:20 pm (UTC)
Yes... once a year. I'm due for one in a couple weeks.
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