just diagnosed

[zandjmom]

I was just diagnosed with a spinal tumor c5-t1 and I am very scared and nervous. I have been having problems for years with my right shoulder and hand. I have seen doctors who said it could be carpal tunnel, pinched nerve, etc. but it would come and go and doctors were not concerned. Last February started tripping and falling, sensations in my legs, balance off. Thought it was from new job and working longer hours and being on my feet alot. In the summer I fell and broke my ankle and it wasnt until my follow up appt with the orthopedic doctor that something seemed very wrong. My reflexes were very off and I was sent to neurologist who suspected ms. After the mri it was detected that it was not ms but a tumor on my spine. Neurosurgeon calling later today or tomorrow to set up surgery date. Very scared about the outcome of surgery. Worried some symptoms may not go away or become worse. This has been going on for sometime and I just want to get back to the way things used to be. I have two kids who need their mom to be healthy and I just want to be able to go for a walk around the block again.

[leebruz]

Your symptoms and story sound almost identical to mine. Meningioma t C7-T2 - surgery in 2001 to remove. I was nearly paralyzed from the waist down by the time they figured it out. All symptoms did not go away but I did very well after surgery and months of physical therapy. Don't be too scared immediately after surgery as you will have all kinds of crazy sensations as your nerves come back to life. Make sure you work hard at therapy. It took a good six months for most of my function to come back and I continued to have improvement for about a year afterward. For me, only occasional shoulder/arm spasms remain and a few areas that have little sensation there. The lower body/leg symptoms totally improved except that I still have to concentrate a little harder on balance. Hopefully, you will do as well or better. Then you have to keep exercising to stay strong. Also, be sure to watch for recurring symptoms for the rest of your life. I hate to tell you this, but my tumor recurred last year (after 10 years) but has been successfully treated with radiation to stop the growth at this point. This was possible because the tumor is very small this time. If you catch it early it is so much easier to treat. Good luck and I hope you are seeing a neurosurgeon at a research or university hospital that has a team to review your case.

[hmal]

I had a meningioma at c6-t1 and had surgery in 2010. My recovery was about 6 weeks and then longer to get my energy back. The pain in my shoulder was gone immediately, but I didn't have the balance issues before surgery. Only during recovery. I couldn't walk on my own for a few weeks, and often lost my balance. The best advice I got here was to research doctors, because your surgeon's abilities will dictate your recovery. Don't go to anyone with no spinal cord tumor experience.