Giant Cell Tumor Network
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Profile Information
- About Me:
- Develop acute lower back pain for the past 9 months, early diagnosis was herniated disc. MRI scan in June 2008 showed abnormal growth in sacrum. Biopsy done on 23 June 2008 comfirmed as giant cell tumor. Operated in 14 July 2008.
- How do GCTs affect you?
- GCT patient
- Location of primary tumor:
- sacrum
- Date of diagnosis of primary tumor:
- June 2008
- Treatment of primary tumor:
- Sacral tumor resection, reconstruction, bilateral fibula graft, spinal fusion
- Current GCT Status:
- Next hospital follow up on 8 October 2008
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hw u doing now?hopefully everthing turned out to be great with u..
hmm...i just wanna asku u a some questions regarding the tumor..
i met my Neurosurgeon last week and he suggested me to go for radiotherapy..did u had yours?btw where u had ur operation? im doing fine at the moment ..the pain is totally gone now...just my legs are a litte bit slow..but i try like brief walk every morning...neway hope to hear from u soon...thanks..
For the most part, I am okay. However, yesterday I tripped and fell over an extension cord in my classroom. I fell on my right knee and hurt my back. My surgeon said that it looks okay, but that I probably jolted the screw in my pelvic bone. He says that it's my bone that is hurting me. I'm nervous, but my doctor thinks I'll just be sore for a while. The worst part is that I have to stay home from work, and I'm worried about them thinking that I'm not dependable.
Anyway, I am still taking medication. After the surgery, I was on a lot of pain medication. My body was used to it, so I have been going down on my meds slowly. I started out taking 530 mg of methadone a day and now I am taking 30 mg a day. Currently, I also take 30mg of methadone a day, 450mg of lyrica, 50mg of amitriptyline, 200mg of provigil, and lots of laxatives. I can't believe that you aren't taking anything for pain. My pain specialist says that I might actually stay on amitriptyline forever, maybe other nerve pain meds too. I'm frustrated because I cannot drive until I get off all of the methadone.
Normally, i have pain that goes down my right leg, but usually at the end of the day. After walking a long time, or even dancing for a bit, I have pain in the right leg, especially in the back of the leg-almost behind the knee but a little higher. Also, after sitting for too long, I get pain at the very bottom of my spine. Otherwise, I'm pretty comfortable. That is normally-not now, or at least since I fell yesterday ;-(.
Do you use a cane? I do for walking around outside or for long distances.
I'm definitely going to ask my doctor about a different kind of MRI machine. I think it would help I knew what kind of metal was used to reconstruct your area. What is it exactly?
I hope your pain is alleviated soon. What medication are you on? I can give you a list of the ones that have actually helped me.
Thank You