Spinal Cord Tumor ---Thread started by Yvonne

[Gundestrup]

tc said:

Dear "Gundestrup" - I agree with you about the "mental hardship of waiting for that impending surgery". I try not to obsess about it, but when I've been told to monitor my symptoms, it is hard to not think about the tumor a lot each day. How often does the UK let you get MRIs?

Hi tc like you say we think about the tumour every day especially as you know eventually it will happen that has been guaranteed. Initially I was having six monthly MRIs until last September when they decided as they could not see any significant growth (even though I had developed new deficits although not major ones) they decided to leave it for a year so I will have my next one in September this year. I have found it a very lonely place to be. What's your story I would love to hear from you?

[tc]

Replying to Gundestrup's last post: I am surprised that you have to wait a whole year between MRIs. Dr. Jallo said I could wait 9 months, but my local neurosurgeon wants me to have an MRI every 6 months. I've scheduled my next one for 6 months. I am always happy to have the tumor checked sooner and see if there is any growth. My tumor @ C-6/7 was discovered in June 2007. I had chronic neck pain, so I was sent for a regular xray. The xray showed some minor abnormality in my spine, so I was told I could get an MRI if I wanted to (it was totally optional, but I opted to have it looked at). A lesion showed up on the MRI with contrast. After that I had a whirlwind of tests all summer (mostly tests for MS, because the neurologist thought this was the first lesion of MS and my symptoms were consistent with MS). I had many MRIs (head, full spine), lumbar puncture, evoked potentials, CT scan looking for other cancers in case the spinal tumor was a metastisis from somewhere else. As time passed and the tumor didn't shrink, the MS misdiagnosis was finally dropped and the lesion was now called a tumor, probably an ependymoma. It took 4 months to come to that conclusion. Six months from discovery of the tumor, I went to see Dr. Jallo. He said the tumor is still small and I should wait for surgery. He did say with great certainty that I would need surgery some day. Now I read about the surgery and post-surgery deficits and I end up scaring myself! Except for this discussion board, there aren't many people to talk to, who understand anything about spinal tumors. I'd be happy to talk to you further and compare notes on symptoms or anything. I have a special fondness for London since I lived there 3 years as a child and my mom lives there now. If you officially register with this group, you would gain the ability to do private emails, if you would like. Teresa