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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.

[User Picture]From: natalie30
2006-04-12 10:53 pm (UTC)
the info may have been disjointed, but i understood it perfectly. :-)

thanks so much for sharing your story with me. it's a real eye opener. lots of things look way too familiar to me, which DOES make it scary.

i had been thinking of going to a massage therapist alot & a chiro here & there. i decided against it until i know exactly what is going on with my head. i wouldn't want for things to be worse just because i didn't wait to see what was wrong. your comment on this confirmed what i was thinking. thanks. :)

i rec'd a call from my dr today saying he spoke with the neuro i had met with a couple weeks ago. they are sending me for an mri. of course, we never know how long THAT'LL take to get an appt, but at least we're getting SOMEWHERE.

thanks again for the info & tips. i appreciate it.

how are you doing NOW, btw?
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[User Picture]From: seamowse
2006-04-12 11:24 pm (UTC)
I'm doing good... thanks. I still have aftereffects from the surgery - nerve damage in my right arm that leaves it numb in spots - which works out great when I need bloodwork done (numb skin *grin*) and a few other quirks that I have Percocet on hand for.

I do have MRI's done once a year, to keep an eye on things.

Yeah... hold off on the chiro and/or massage therapist until you know for sure what is going on.

You can never be too careful - after suffering for nearly 8 years and being misdiagnoses... like I said, you can never be too careful.

You'll have to let me know how things go with the MRI. How are your symptoms similar? Just curious.
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[User Picture]From: natalie30
2006-04-13 03:05 pm (UTC)
a couple months ago i had this odd pinch in my shoulder, almost felt like a pinched nerve would feel. it shot up into my neck & down my arm & back. i wasn't doing anything to warrant it happening. we ruled out tendinitis(it wouldn't go away) through use of anti-inflamatories. my neck is soooo stiff. my head is pounding on one side. my arms, hands & feet tingle & sometimes are numb. not all at once, but it moves. ummmm, my muscles, especially in my arm, ache & feel heavy. that's about it i think. some symptoms are diff than yours, but i found there were alot of similarities. all symptoms but the shoulder thing has been going on since january! it got worse when the shoulder 'thing' happened.

hopefully the mri will rule alot of things out... i will keep you posted.

good to hear you're doing 'ok' after the surgery. :-)
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