Any other spinal cord tumor people out there?
 

On Jan 24, 2012 I had surgery to remove an intramedullary spinal cord tumor that went from C5 to C7 along with a decompression. I am VERY gratefully to still be able to walk (there was a 50/50 chance I would have been paralyzed neck down), but there are other things I am now dealing with that would be great to chat with other people about.

*I still occasionally get whoppers of headaches.
*Muscle atrophy in my arms.
*I have numbness that go from my left hand, across my chest and down to my right hand (the only fingers that work somewhat ok are my thumbs and fore fingers and even those are about 50% numb). Needless to say, I drop lots of items and can't feel if I cut or burn my fingers.
*There are 10 screws and rods holding my neck together which can cause some pretty nice neck pain.
*There's numbness from my waist down. If I get the signal to go to the restroom, I have about 10 minutes max to make it happen. My legs are still somewhat strong, but I get extremely tired if I walk more than 10 minutes or so and I start to foot drag and limp (I also have to watch where I walk because I can't feel my feet hitting a surface).
*This is the weird part: while my feet are numb, they are also hypersensitive at the same time.

Wow ~ You ARE a very fortunate person! Thank God you aren't paralyzed!

Are all the symptoms you're having the result of your cervical surgery? These are pretty serious!! When did you have your fusion? When did these symptoms start? Do the doctors think these symptoms are permanent or will they subside?

Jeepers, this is pretty awful to have to live with!! My feet are numb, but that's from the lumbar surgery & nerve damage. I have a herniation in the neck that sometimes acts up, but i've been pretty lucky -- if I put my cervical collar on it usually makes the pain go away.
I'm starting to have some numbness in the (pardon) "butt" area. LOL I'm going to have to watch that so I don't go into cauda equina syndrome. :eek: And I do get some numbness in my hands, but it's not all the time.

Gosh, my friend -- I sure hope they're offering you SOME plan of action!! What is their next move? Do they offer any ideas or give you any "time" when this might subside? My prayers are with you. Take care. Hugs, Lee

Yes, most of these problems were result of the surgery. The odd thing is, I had very few symptoms pointing towards a tumor. As a matter of fact, the initial MRI ordered by the doctor was because he thought I had pinched nerves brought on by degenerative disk disease. When I went to get the results, he was quite honestly floored that I was still walking.

I had my latest MRI on Jan. 2, 2013 (I have to get them a couple of times a year for 5 years) and my spinal cord looks like a drinking straw that had been bent. There is absolutely no way of knowing if it will be permanent or will subside. The last doctor I saw mentioned my having something called myelopathy and neuropathy. I haven't really studied up on those terms yet so I really don't know what that would mean for me.

For the plan of action it is, for the time being I suppose, wait and see.

Well, I can give you a short definition of Myelopathy -- it's any disease of the spinal cord or bone marrow. That doesn't say much does it. :rolleyes:

Neuropathy is an abnormal and degenerative state of the nervous system or nerves. Oh goody. :rolleyes:

Since many of us have neuropathy, I'm sure we all love to see THAT. :( To be honest, I'd never looked that up before. Good grief.

And your spinal cord looks like a bent straw? :eek: YIKES!! Yes, I'm surprised you're walking too! You're a MIRACLE! God is certainly watching over YOU.

Will you please keep us informed. I know that *I* want to know how you're doing!! I'm REALLY interested. I'll keep saying prayers. :) In the meantime, please take good care of yourself. God bless & hope to hear from you soon. Hugs, Lee ;)

Hmmm. Neuropathy does sound like a downer all right.

I have two doctors that have strongly suggested that I apply for disability. I wasn't really to keen on the idea. The whole pride thing, you know. But the more I thought about it the more I realized that what I want to do is easily trumped by what my body is capable of doing.

I reluctantly applied for SSDI a couple of weeks ago. I have an appointment Feb. 12th at the field office. Reading some of the horror stories about SSDI from the other members here, I'm not expecting a favorable outcome. Another option that may be available is vocational rehab. Though I'm not sure what jobs that are out there that I am able to do.

Don't be surprised if your denied the first time. That's almost a "given" with the first application -- I think it's to weed out the ones who really aren't disabled, and they won't reapply cause they don't want to go thru all that stuff again. LOL

The 2nd time, get an attorney on contingency. He will get his fee from your "back wages" so you won't have to pay him anything up front. He'll just take his fee out of your "big check" you get when it's finally settled. Undoubtedly you'll be approved once an attorney takes your case. Make sure you get one who specializes in disability cases. I'm sure with everything you have going on, that you'll be approved, if you're not this time.

So good luck -- and let us know how this one turns out, will you? I'd really like to know. Hugs, Lee :)

Had my interview at the field office today. To say it was quite painless would be an understatement. He was very polite and attentive.

He made sure to tweak the information I provided so when it gets bumped up to the suits at the determination location they will have a clearer picture of my condition.

After the meeting, he did not have another imminent appointment, we chatted for a few minutes. He answered every question I could think of. He also mentioned, off the record, that I may have a very good chance of being approved right away. But not to get my hopes up.

As I was leaving, the gentleman told me to call him if I had anymore question and/or concerns. He said not to call the 800 number because many of them tend to give out false or outdated information (or something to that effect).