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Post by juliefromca on Oct 3, 2008 17:18:57 GMT -6
I have had some of the pre-surgery symptoms return recently, and its freaking me out. i have an appointment on monday with my neurosurgeon to discuss it, and i'm hoping he says its normal to have this happen (maybe the fibers are re-situating themselves or something?). At any rate, i hope its not related to the cysts (syrinx, i think they call them) refilling with CSF or something.
anyway, any experiences you all could share with me about this?
hope everyone is well and/or recovering smoothly,
julie
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Post by Joel on Oct 3, 2008 23:22:19 GMT -6
Well the obvious question should be--why aren't you getting an MRI? It could be just an up and down kind of thing too--sometimes we all think things are getting worse or better, and then things go back to "normal".
Joel
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Post by paul55 on Oct 4, 2008 7:50:52 GMT -6
Joel just mentioned what I did on another thread about healing. Sometimes an area will get better, then another will get worse with the same symptoms as before. Then that area will get better. I just chocked it up to the healing process. My MRI's are clean after over a year. It just gets frustrating and certainly can depress you very quickly.
I have the same issues Julie.
Paul
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Post by susan on Oct 5, 2008 16:59:01 GMT -6
Julie,
I hate to sound like "Debbie Downer", but I think this is just life after spinal cord tumor. I had surgery in January and I still have my pre-op symptoms and worse. They don't seem to be getting any better, but I have been told that it can take up to 2 years for the spinal cord heal. No one told me that this could happen. To be honest I never really asked. I was so afraid of being paralyzed from the neck down that was all I could think to worry about pre-op. It wouldn't have made any difference. I had to have the surgery.
I am in the process of trying out new meds to control the symptoms. When the switch was made and neither dose was therapeutic I was shocked to find that they are all still there, just suppressed by the medication.
My MRIs look great. I had 2 large cysts (syrinx) and they are gone. I also had cord swelling to the top of my thoracic spine and it is also gone. But my sensory symptoms/pain are worse than prior to surgery. The motor problems I had after surgery are much improved (I had none prior to surgery).
I found this website in the process of trying to figure out if the way I felt was "normal". It isn't easy to find articles about sensory symptoms following spinal cord tumor surgery. I was constantly searching and reading and rereading the same articles over and over. When I read the People Page on this site, I realized that many of the stories sounded similar to mine.
You should call and let your surgeon know how you are feeling. I would be prepared to be told that it takes time and only time will tell your final result. It has been very frustrating for me because I have never been "sick" this long in my life. I feel like I should have recovered long ago. I am still hopeful things will get at least a little better.
Susan
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Post by 8338 on Oct 5, 2008 20:58:31 GMT -6
There will be days when I'm in a lot of pain or tingling more and think that it's the "t" back but then the next day I will have almost no pain at all and forget to take my neurotin. I think a lot of it has to do with the caffeine I drink or chocolate that I eat :-)
Seriously, your operation still wasn't that far back. Give yourself time and maybe you should keep a log every day and keep in touch with your surgeon.
Barb
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