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Brain and spine tumour support

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First Post [Sep. 14th, 2010|03:21 pm]
Brain and spine tumour support

Hello! this is my first entry mosty because i have to come to terms that in all likelyhood i have a tumore somewhere between my C1 and C2 vertebrae (or so says the MRI) they won't tell me much except theres a dark mass (tho the story changes repeatedly depending on which doctor i speak too my family GP thought it was a cyst but my neurolist's office (note the receptionist) said they weren't allowed to say much more) of course my neurologist won't see me until the follow up CT (which was surprisingly fast as was the MRI) results come back so in about 10 days or so i suppose.

I'm still hoping its endometrial cells as i have endometriosis. I know theres no cord compression but the idea of a biopsy makes me really uneasy. I do not trust a doctor to do a proper epideral and that high up the risk is so high for injury i'm not impressed. I guess i'll cross that bridge when i come to it.

The location is literally cm's away from the one my grandmother died of. I asked the CT tech if those types of tumors were hereditary (she said she wasn't supposed to say anything but yes...they were.) She also went OH SHIT during the scan but i'm convinced she was on a personal call as the other alternative sucks donkey balls.

my immune system is already toast so i'm hoping its not something horrible or medium horrible...maybe i can just let it stay in there and just not sleep flat on my back (which i haven't been able to do for years) maybe its the result of the skiing accident and is a giant cyst or something...... I'm tired of thinking of the worst case scenario so i'm focussing on all the best case scenarios. In the end....whats there is there and theres not a goddamn thing i can do about it.

The shitty thing is that its promted me to actually want to live for once. As an abuse survivor and long standing mental illness patient (OCD, PTSD, etc.) i've spent most of my life wishing i was dead.....i would like to think that god or whatever listened to better advice than mine.

I've tried talking with other people, usually by way of jokes as being serious makes them quiet and stop talking to me. Nobody knows what to say when waiting to hear the biggest news of ones life so far. I figured i'd try this community out as at least people have been through the wait, the questioning the getting angry and the not knowing exactly what to think.

in the end i have to wait for the last word on the results but i really wish they could tell a person right away. I'm in Canada home of free health care which means long ass waiting times and very little straight answers for a very long period of time.

i'm still very hopeful its just my osteoperosis acting up and a bunch of endometrial cells..... positive thinking seems to be keeping me somewhat sane....

so...has anyone else gone through this? what was your experience like? any advice? as i'm not well i haven't been working for quite some time (finding a doctor in Toronto is like pulling teeth) and they've run tests, i've had laproscopic surgery for endometriosis that continues to be a huge pain issue and i live off oxys due to the pain (mostly abdominal but also my back)

if anyone could maybe sympathize with the situation, want to laugh with me or comment it would be great. The silence IRL is deafening. Its as if i suddenly devoloped social leoprosy even tho i don't talk about it. i do walk with a cane and lately people who used to talk to me pretend they didn't see me as they walk by. Its disheartening. After years of feeling like a pariah for mental health i figured a physical illness would not inspire such.....freaking out-dom but alas it seems to only make things worse.

i wish i had a psych right about now. I'm supposed to but none to be found that will take my case as i've been in the system for 20 years (i'm 30 but look 17)

Hopefully this community will give me a sense of not being so completely alone in this process as i've been alone with my health most of the time as family and friends don't know what to say, get overwhelmed, pretend its not there etc. so i'm used to being alone...i just really don't want to be anymore.

oh...... to help you give a face to the name this is me i'm Christina

in relation to face
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(no subject) [Dec. 14th, 2006|05:51 pm]
Brain and spine tumour support
I had my MRI scan last month, i'm free of tumours yay!!!! Another scan in 2 years to check again but i'm really chuffed :-D
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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.
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