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Post by lkhubbard on Jul 19, 2008 23:15:42 GMT -6
Sorry I guess I don't know the more scientific term for this to know which specific forum it belongs in...
My brother has been diagnosed with a Giant Cell Tumor affecting his C1 and C2 vertebrae. I understand that this is fairly rare and am looking for anyone who has experience treating this particular tumor in this location or a previous patient or family member of a patient.
We are desperately seeking second opinions on the proper course of treatment, as well as experienced doctors who have actually dealt with this before.
Any and all response is appreciated
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Post by badtazz on Jul 20, 2008 11:20:03 GMT -6
Mine was inside my spinal cord, and needed to be operated on immediately because of the problems it was causing. Are they suggesting surgery? or possibly Radiation? or do they just want to keep an eye on it? How badly is it affecting him? that could be a factor in determining what to do. Mine was looked at by 3 doctors before I decided what to do, always get a second opinion. Most insurance requires a second opinion. I would also suggest asking alot of questions, write them down if you have to. Ask about the risks, and how many of these has he dealt with. I hope this helps.
Jeff Jones
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Post by Laura Hubbard on Jul 20, 2008 16:03:44 GMT -6
He is in extreme pain and can barely move without blinding headaches. He can no longer stand to move his neck at all.
They are planning an aretrial imbolization this Tuesday, then surgery on Wednesday to remove the tumor, place a pin in his C1, 2 and 3 and do a bone graft from his hip.
They are trying to avoid radiation because he had Hodgkins Lymphoma 3 years ago and received radiation in his lymph nodes already in that same area.
I guess my main concern is what is our doctor's experiance with this exact surgery and where do you draw the line between getting all the tumor and possibly paralizing him in the process???
Who was your doctor and at what hospital were you treated?
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Post by 8338 on Jul 20, 2008 17:57:05 GMT -6
Hi Laura,
In my opinion, I would contact Dr. Jallo of Johns Hopkins Hospital. He was the surgeon who got my tumor out, which was from t1-t2, inside my spinal cord. He is a pediatric neuro surgeon, who specializes in spinal cord tumors and is one of the best. He will make sure that he gets back to you. You will find his email address on this forum.
Barb
Keep us posted on how your brother is doing, we are all here for you :-)
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Post by missym on Jul 21, 2008 17:34:31 GMT -6
I had a tumor inside my spinal cord at C1-C2 but I believe the tumor you describe is outside his spinal cord right? I thought that Giant Cell tumors attach themselves to bone and if that is the case there will be a whole different set of deficits etc.
Dr. Jallo would for sure know the course of action and possibly guide you to the right NS and team.
I can only imagine the pain your brother is feeling. My heart goes out to him and your family. Hang in there, I am sure there is help ahead!
Missy
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Post by Joel on Jul 21, 2008 21:19:37 GMT -6
It sounds as though your time is quite limited. Email Jallo and ask him his opinion, but he will probably ask for the films which means several weeks time. The questions you asked above are exactly the questions you need to ask your NS. How many of these has he done? How successful? Go to a 2nd local NS and get another opinion.
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