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Originally Posted by BabeHunter
ASM
i think it's great that you are answering questions.
do you remmber how big was your tumor, how long it took them to find it out it was the cause and after the surgery there was no connection at all in the spinal canal?
thanks
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Yeah I remember. It was roughly the size of a softball surrounding my spinal cord.
I was in the hospital for two months close to three. They were about ready to just send me home to adjust and live with the fact that I had gillian berea syndrome.
It is sort of a complicated issue, since after about two weeks into my initial stay I was very curious and became a "problem" patient. I constantly fought with the physical therapists. I kept saying I was in too much pain to do anything, which I was. They insisted I was just making it up and being lazy. (lots more to this story by the way) I also started reading all the assorted medical literature in the hospital in regards to my illness. This is where the problems really started. I knew damn well that I did not have gillian berea syndrome and that it had to be something else. So the just made new resident doctor and I began to really butt heads. Did not help at all that I was only twelve of course. It was very hard because not only was the doctor against me but he had all my relatives on his side. He was a doctor after all and I was just a kid. This resulted in the doctor fighting with me for no other reason than ego and he cancelled assorted tests (opps!).
Well back to sending me home. They were ready to just send me home and let me be. Well my parents felt that I at least needed to go to a rehab hospital to better learn how to be in a wheelchair and live a normal life. As luck would have it my grandfather is very high up in the Shriners organization and with a quick call he had me into Shriners hospital within a few days.
After arriving at Shriners hospital and getting checked in and shown around a bit. Getting my lectures on how they did not want to butt heads with me or have me fight all the time and all that happy horseshit (got to love how medical charts follow you through life) they scheduled my therapy for each day. The following day I met with my physical therapist and they had me doing some stretching on a mat. Well it hurt like fucking hell and at one point the therapist told me to sit still and she began to feel my neck area. Told me that was it for the day and sent me back to my room. Latter that night they sent me off to UCSF for a test. I was scheduled for surgery the following day. Apparently the therapist was able to visibly see the lump on the back of my neck and I indeed had a tumor.
Shriners brought in a top neurosurgeon and had my tumor removed. Followed that with some radiation treatments and walla it was all over. Therapy could finally begin and there was no more pain. To bad the damage had already been done though, and if the original doctor had not cancelled some of those other tests or even looked me over better everything would of been a lot different.