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Hello, my name is Terri and I may have cancer in my spinal cord. Let me tell you how I got to this point and why there is uncertainty. This all started in May of this year. I was at work one morning and my right leg suddenly went numb after the left leg had been numb for a week (I had thought it was a pinched nerve and it would go away on it's own). My co-workers thought I was having a stroke (after my blood pressure shot up) and one of them carted me off to the local ER. The ER dr. diagnosed me with parasthesia and sent me home to follow up with my primary care dr. which I did the next day. He thought it was just a pinched nerve and put me on an oral steroid which did not help. When I went back to him in a week with no improvement, he decided to refer me to a neurologist. By then the symptoms had gotten much worse - more like multiple sclerosis symptoms. So I went to the neuro and he immediately ordered the IV steroid methylprednisone for 5 days. I could barely walk, was dragging my right leg and had to manually lift it to get in the car. To make a long story shorter, I have had a lumbar MRI, a head MRI, a cervical MRI (which showed the spinal cord lesion), a lumbar puncture to rule out MS, a chest/abdomen/pelvic CT scan, a PET/CT scan which showed a problem with my thyroid, & a fine needle biopsy which indicated "a follicular neoplasm pattern". My neuro was sure that this was the primary cancer that he sent me directly to a hematologist/oncologist who sent me to a general surgeon. I ended up having a total thyroidectomy on August 13th. On August 21 I found out that the thyroid was cancer free. So I called my neuro's office and gave him the news and he set me up with a neurosurgeon. I saw him Tuesday, September 9th and he's sure that the spinal cord tumor is the primary cancer. He was surprised that I am still mobile and not walking with a cane or in a wheelchair. I am taking 60 mg of Prednisone a day in order to stay mobile. Because I'm still mobile, he does not feel he has the expertise to operate on me. I have not had a biopsy done on this tumor nor had anyone take any tissue samples yet. I'm assuming that will be the next step as this thing is up high, T1 level, and is affecting everything below the middle of my chest. Anyway, he has had a week to locate someone who can get the samples and biopsy and I'm waiting to hear back from him. My legs are getting worse again and I have neuropathy in my left leg now, taking Lyrica for that once a day. My back is also getting worse, more stiffness on the right side and more pain on the same side.
Sorry this is so long, this has been a long journey for me with no end in sight. I spend a lot of time on the Internet looking for information on spinal cord tumors and support groups. When we thought I might have thyroid cancer, we thought we were on the right track and could start treatment. We still don't know what kind of cancer I have or even if it is cancer. The way my luck is going, it could be a benign tumor that is just making my life miserable!!
Please feel free to email me privately, if it is allowed. I really feel a sense of aloneness here because of the rarity of this disease. Thanks for this forum, I'm glad I found you!
A very welcome to you, especially for having to visit so many different doctors. I am a cancer victim as it started with surgery for prostate cancer. For years there was no problem and I visited my doctor on a regular basis. But I guess it is necessary to be awarye of the fact that all good things eventually come to an end. During the past year, the PSA test began to increase and following an MRI, CAT and bone scan, a tumor was found on the lower left lumbar region. The vertebrae also appeared to be pitted. The same testing, three months later, indicated the pitting appeared to be less but now it is time for more fun as there appeared to be a suspicious area on the fourth vertebrae which is around my neck.
I am scheduled for the same tests the third week of December so it is a matter of waiting. I am also very interested in discussing my experience with anyone willing to listen. I have been a loyal contributor to the Cancer Group Forum started by Cancersurvivor2 who has had surgery. So I will be checking on you to hear any good news you may wish to pass on. One thing we do have in common is this, our life is in the hands of the Greatest Doctor and the prayers of the cyberfriends I have met, has been a tremendous help to me. I know they will all join me in prayers for your health to improve.
As you wrote about your condition, you said you felt you were taking up so much of our time to read what you wrote. Do not worry as we are so thankful to have met you and will do everything possible to assist.