I’m new to this discussion list but, but my son has been living with NF for 25 years now. What makes more difficult is that my son has also mental disability and cannot tell me what and if anything hurts. He has a spirit of an angel and he is the one who pulls me thru so many low moments.
Now I need to decide if I want him to have a surgery. In his last MRI doctors found that his tumor in the upper spine (neck area) is too big and needs to be taken out. It looks like the tumor is wrapped around his spine. I’m also noticing that he has spasmodic movements in his arms and sometime in his leg.
The doctors at Virginia University telling me that he needs to have surgery in the next couple of months or he can be paralyzed.
Please, if anyone had this type of surgery or have a family member who did, tell me all about it. I cannot decide because my son cannot tell me if something is hurting. If this continues I don’t think I’m going to make it because there are just so many nights I can go without sleep and days of anxiety taking over my life. Is anyone here who can tell me anything about this type of tumor?
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Surgery on upper spine
- By Ania
- Posted July 12, 2009 at 12:25 pm · 10 replies
- In Living with NF2
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Explore topics in this discussion:
Dizziness Surgery Stroke Foot drop Anxiety Weakness Pain Paralysis
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- By tresham
- Posted July 13, 2009 at 2:12 am
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I did have a tumour removed from my thoracic spine (t1 -t4) about 8 years ago. It wasn't causing the problems you son seems to be having but it was causing some degeneration. There was talk about how to remove it. At some point the surgeons thought it would be better to come thru the chest wall and that would have meant extensive surgery and longer recovery. The surgeons discussed it and decided to go thru the back. It all went fairly well. I do have an odd sensation there now, kind of like a tingling/pins and needles, and when it gets cold it is aggravated. But, like your son's, the doctors said it needed to go.
I wish I could tell you to relax, and not be so anxious. ((hugs))
- By russcape
- Posted July 17, 2009 at 9:33 am
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Hi;
It seems the fact the tumor is there and has great potential for causing an adverse outcome if not treated, justifies your approval of it's treatment, no matter whether you son can comment, or not.
We pay for expert advice in one way or another so why not follow the recommendation w/o wavering? I'd rather correctly treat in timely fashion than have a salvage surgery with a smaller hope of correction.
Not meaning to be less than patient here, Ania. You're son is being seen at an excellent facility!
Russ
- By KittyLover
- Posted July 17, 2009 at 1:44 pm
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i had the majority of a tumor, which is wrapped around my spinal cord (c4-c6) and was also entwined in my brachial plexus network of nerves - on the right side.
the surgery was extremely complicated and involved clamping off my right vertebral artery. they didn't remove all the tumor (the remaining portion on the left side - which isn't causing me problems). they'll do that at a later date... if it grows any (which it hasn't - after 10 years). it will be a 2 step process - one through the front and the other through the back.
i had many, many problems prior to the surgery. the symptoms were very similar to symptoms of MS, only with more involved. i was weak on the right side of my body and the muscles in my right calf began to atrophy. at the very end, i could barely turn my head to the right without getting dizzy. also, my tongue started to go numb on the right side.
the surgery was extremely risky and i was told of the risks and complications involved - especially if they needed to clamp off the vertebral artery.
i will not alarm you by sharing all my complications - each case is different and mine was the exception to the rule. i'm one of those people that is in the percentage of things that can go wrong, but 9 times out of 10, won't go wrong. murphy's law applies to me... and to very few others. :P
- By KittyLover
- Posted July 17, 2009 at 1:52 pm
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i do have to let you know that the neurosurgeon told me of the risks (10%-15%). of complete paralysis, stroke, or death. but he told me without the surgery would result in the same. i had my surgery immediately - 3 weeks. it would've been sooner, but got pushed back due to complications i had with my angiogram to test out my right vertebral artery and also my neurosurgeon got called in for emergency surgery. but during that 3 weeks is when i developed the numbness in my tongue the dizziness when i'd turn my head to the right.
- By Ania
- Posted July 20, 2009 at 7:14 pm
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KittyLover, thank you for replying. From your symptoms it looks like they are very similar to my son's. Would you tell me how are you doing after the surgery? I'm noticing that my son has difficulty turning his head to the right but i don't know if it is the pain or the dizziness that stops him.
- By KittyLover
- Posted July 20, 2009 at 7:21 pm
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i'm doing well. i have alot of nerve damage in my right arm and shoulder either from the surgery itself or from the remnants of the tumor.
unfortunately, 3 days after my surgery, i developed a blood clot in the left temperal/parital lobes of my brain, which required immediate brain surgery. by god's grace, i am alive to tell about it - a true miracle. when i said murphy's law doesn't apply to me - that's just what i mean. :P as a result, i have brain damage as well as a few other side effects, but all of the other symptoms that were there before my surgery are gone.
i was in pain for 8 years before i knew it was related to the tumor. as i sit here now, i can't believe how long i lasted so long, in that much pain. it wasn't until the very end that i realized something was wrong.
when i would try to turn my head to the right - it felt like something was preventing it from going all the way, but it was also painful and would make me dizzy.
if you have any other questions, please let me know. when i discuss my spinal cord surgery with people, i'm kind of hesitant to tell them everything. i don't want to scare people and think it could happen to them. but i do have to say that the surgery is risky, but not having the surgery is a definite death sentence.
- By Ania
- Posted July 20, 2009 at 7:41 pm
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It helps to know from someone who knows because my son can tolerate the pain now that is hard for me to tell how he really feels. If you would have to do it again would you?
- By KittyLover
- Posted July 20, 2009 at 9:31 pm
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yes... of course i would. if i didn't, i'd be dead - that was how my neurosurgeon put it. he said the risk is there, but if i don't do something, i'd end up completely paralyzed and eventually dead.
it was very painful surgery - mostly because they had to go through the back. but it had to be done.
to remove the remaining portion (on the left side), we are putting it off until it starts to cause major problems - which it hasn't at all. but they said they could remove it through the front, for one surgery. and if another was needed - probably through the back.
but yes... i'd do it again. :-)
- By cyndie
- Posted July 21, 2009 at 12:06 pm
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hi ania,
i have nf2, i'm 38. i have 2 tumors inside my spinal cord at the c-1 to c-3, the 2nd one a lil' lower. i had surgery in 2003...at the time i was fine, i had some muscle weakness in my left leg, but other than that i didn' t even know there was a tumor. during the surgery i guess they discovered the tumors had intertwined with the spinal cord, so they got thier biopsy and closed me back up.....leaving the tumors there saying it was too dangerous to remove them. i had radiation every day for 5 wks afterwards, which didn't help. and i was pretty much normal for the next year.....then the pain started. it started in the middle of back and would usually go away in a few hrs.
over the next couple of yrs and up to now....i continue to get worse. i'm in pain 24/7,...doc says its from the tumor pressing on nerves. the tumors are also causing me to have physical problems with my legs, feet, and hands. i have difficutly walking, i have a foot drop, my fingers on my right hand curl up. i can't work anymore.
my oldest daughter also has nf2, she's 21. she had the same surgery as me, twice, her tumors were small and they were able to remove all 3. at this time she has no problems...no pain, no physical issues.
nf2 effects everyone differently.
my doctor doesn't want to do surgery again, he says it will only do more damage.......
spinal cord surgery is very risky
i hope i've helped a lil'.....if you have any ?'s just ask.
i'm very familiar with nf2.....all the women in my family have had it.
- By rontrix
- Posted August 6, 2009 at 9:18 am
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I live in a developing country with limited information on NF. My request is to give clinics and hospitals that can help in NF infilitration in the lumbar spinal cord and cervical vertbral which is might be the cause of numbness for my brother
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