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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

tumour_support

[seamowse]
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.
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Comments:
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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[User Picture]From: secretsatan13
2005-11-09 12:30 am (UTC)
i can't help much. i have nf(1) and spinal cord tumours i've been debating about removing. the "problem" one is at c1 and is only 1cm right now. so it's small, but growing encroaching around the spinal cord.

my neurosurgeon completely left off the bit about paralysis as a side effect, only that paralysis can happen if i *don't* remove it.. but it hasn't yet reached a point where i have had symptoms, yet. (it was 'found' during a regular visit to a nf-speciaslist/neurologist.)

i go back to the neurologist next tuesday to further discuss the pros/cons of surgery and gather a time frame.

i don't have a whole lot of information, yet, anyway, but would be interested in hearing anything you have to share.

do you have a chat program and/or email?
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[User Picture]From: natalie30
2006-04-08 11:20 pm (UTC)
your pre-diagnosis sounds exactly what i'm going though right now.

what exactly were your symptoms before the MRI that diagnosed you?
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[User Picture]From: seamowse
2006-04-09 12:54 am (UTC)
Well... back in 1989 is when I started having a dull, stabbing pain... non stop, right under my right shoulder blade. It was in just one area, and not the entire shoulder. I went to my doctor - he said it was fibromyalgia. He prescribed me Flexiril which helped, but only for a while. It made my body like jelly at night! Then, he prescribed me Naproxyn - which bloated me and made my belly swell up... so he took me off of that. The pain was non-stop, and he wouldn't give me anything narcotic for it... so I learned to 'grin and bear it'.

Then... in 1991, I started to have tingling in my right hand - down to the wrist and fingers especially. My doctor then told me that I had carpal tunnel. He gave me nothing to help it but gave me a prescription for a brace, which I never wore. I would have to dangle my right arm over my bed at night, the tingling was so bothersome.

Towards the end of 1996, I began to notice that the right heel of my shoes was wearing down faster than my left shoe. I didn't really think anything of it.

The end of January in 1997 - I came down with the flu, during which time, both the right and left food started to tingle. I asked other people who had the flu at work if they had similar symptoms - one person actually said yes. Well... the tingling did not go away. My left lower leg - towards the ankle, got hypersensitive - the skin... it was very sensitive to the touch. Also, the foot itself was like that. I began to notice that I was tripping alot when I would walk. When the wind would blow, I had a hard time walking - it wasn't the force of the wind itself, but the impact it had on my body - the cold made it hard for me to walk.

Well... anyways, one weekend, it rained for 3 days straight. This was probably around the end of April or so. After that, I started to drag my leg when I would walk... not alot, but enough for me to really notice. I also began to walk with a limp.

Things got worse, so I called my doctor. He performed a couple of tests - scraping the bottom of my feet, making me stand on one foot, etc. Whatever the results were - I was the look of fear in his eyes as he told me he was sending me to a neurologist.

Long story short... I ended up having surgery. After they discovered the tumor, there were a couple of complications regarding the angiogram I had of my vertebral artery. I had to wait a coupld more weeks before the surgery could be performed. During that time... my symptoms grew even worse. It got so if I turned my head to the right, I would feel resistance. The right side of my tongue also started to feel numb - like it would if you were to get a shot of novocaine.

By the way - the angiogram of my vertebral artery was done to see if the artery could be sacraficed and clamped off. The artery was feeding blood to the tumor (which isn't completely removed) and the surgery itself would be risky to the artery. Anyways... the right vertebral artery was the smaller of the two - therefore, it was able to be clamped off. I bled after my angiogram, which is why they postponed the surgery - they wanted to run tests on my blood to see if I had any clotting issues (a whole nuther story).

After the surgery... I don't know how I put up with the pain as long as I did. It's hard to believe I was in that much pain and just put up with for as long as I did.

If you do have similar symptoms... don't go to a chiropractor or a masseuse to get relief. I thought about doing that and my neurologist told me that if I were to have done that, it most likely would've instantly killed me. The tumor involved the vertebral artery - like I mentioned, and I probably would've hemorraged instantly, with the pressure that a massage or a spinal alignment would've caused.

I hope this helps... sorry if the info seems somewhat disjointed. If you need further detail, just let me know! Any other questions... just let me know!

I hope all goes well with you. It's a scary thing to go through.
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[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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From: (Anonymous)
2006-04-26 06:07 pm (UTC)

Help for cancer blog user study

Dear tumor_support:

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My name is Deborah Chung, and I am an assistant professor at the University of Kentucky School of Journalism and Telecommunications. My research focuses on the use of new communication technologies and their potential to empower information consumers. Currently, I am interested in examining how health information seekers, particularly cancer patients and their families/friends, adopt blogs.

I am teaming up with Dr. Sujin Kim, also at UK, who is an assistant professor in the School of Library and Information Science and has a sub-specialization in medical informatics. She has been working closely with the UK Cancer Center to build a biorepository information system (UK-BIS) for lung and ovarian cancer samples. Together, we would like to learn about how new information channels, such as blogs, are being used by cancer patients and their families/friends — specifically we are interested in their motivations, uses and consequences of using blogs.

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Sincerely,

Deborah S. Chung, Ph.D
Assistant Professor
School of Journalism &
Telecommunications
University of Kentucky
dchung@uky.edu

Sujin Kim, Ph.D
Assistant Professor
School of Library & Information Science
University of Kentucky
sujinkim@uky.edu

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