taz
New Member
Looking to see who has a tumor inside there spinal cord heamangioblastoma. Whats best to do
Posts: 1
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Post by taz on Aug 3, 2018 10:47:09 GMT -6
Hi I noticed numbness in my left arm and hand just over a year ago that was getting worse as I was dropping things. I went to the doctors and was told I was just tense and stressed. Feeling a bit embarrassed as basicly the doctor made me feal I was wasting hes time so I left it a few more months before noticeing a cringy pinching of a nerve fealing near my left collarbone. Thinking it was a traped nerve I went back and see a different doctor and begged him to refer me to someone who could release it. My doctor felt it was more than that and asked if I had ever had a MRI. I said no so he said he would send me to get a better look to see what was going on. That's when I found out I had a tumour which was bad enough but to find out it was inside my spinal cord itself near the central nerves was total shock. The neuro surgeons said it was such a rare tumor in the uk and that there aint been many like mine and tht they needed to have a big meeting on how they would deal with it. The result was too much of a high risk to operate as it could paralize me from the neck down and that they would just monitor it for now. I was fine with that and was passed over to another neuro surgeon to monitor me. This neuro now wants to operate as my tumour has grown a fraction. He feels its best to do the op no before it gets too big and does more damage. But with the other neuro surgeons saying its too high risk I'm scared stiff of being paralized. I'm so stuck on what to do for the best. its the hardest decision of my life and I keep crying. My sons are scared about me having the op as they cant handle the thought of everything its turned my life upside down. Any advice or help would be much appreciated.
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Post by susan on Aug 21, 2018 11:32:18 GMT -6
Hi there you sound like me. I had a hemangioblastoma inside my cord at C2, only to the right side. I had it removed >10 years ago. If you want to chat privately, I'm available. Are you on Facebook? There is a SCTA group there too. We could do a private message there
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Post by Clark lima on Nov 26, 2019 3:16:51 GMT -6
Hey Susan, I just wanted to say happy holidays, do not despaire stay positive work on the repair. i’m five years in front of you, and yes it’s true our tumors are rare and it’s devastating and life changing too you sounded so familiar to I was in that boat just like you They didn’t reattach some vertebrae did toss yours out too.
from a Thanks Giving & Merry Christmas hope you are still recovering getting better everyday and you and your sons have been coping well through this nightmare..I envy you your sons. Mine was at c-3 c-2 they did Botox, epidurals how about you I tried Meditation morphine to look in the mirror Im just like you I bet your strong and kept your humor too Look in the mirror I bet I’m just like you I forgot my password and my log in so a guest would I found it was faster and necessary too I felt compelled to reach out to you i I pray my words came positive to you I’ve been accused of being negitive but never to a fellow patient this I would never do maybe to myself but not outward to a fellow survivor who’s as special as you curious about your journey love to here back to if you can’t find me here check FaceBook too I should be easy too find cuz I’m just like you. Somehow some way I was compelled and drawn too you earlier this evening did you feel it too i’m really serious I’m a Jedi Knight and use the force to look in the mirror I bet I’m just like you Clark Lima surgery October 2013 at Kaiser Redwood City
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Post by cargette on Mar 24, 2021 1:57:21 GMT -6
Hi Demi, what do you mean?
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