i had the inital surgery when i first found out i had it, in nov 07, only 3 months after my accident. it did improve but i still had alot of pain in my wrist so i had another surgery dec 30, 07 and they sent me home about after a day or 2 home i realized my arm was really hyper sensitive again and then i had burning pain in my back as to where i couldnt even lay down to sleep.. so i went back up to iowa city.. and they wanted to wait to do anything but said the syrinyx was worse. now i am loosing strength and hand function in my left hand along with more numbness in my left side on my chest.. i told them and they did another MRI a week or 2 ago and i do have a appt in 2 weeks but i just feel like i cant wait that long. this is just ruining everything, im thinking i wont get my hand strength and function back, i had some numbness before my 1st surgery and it never came back, im in school and really cant afford to miss but i have no choice!!
im just soo down and soo depressed over this.. has anyone had this same problem? and advice?
they put a shunt in the first time and put another one in this last surgery and its just not working...
you can google Syringomyelia for some info to understand it further
0
Feeling Like Things Will Never Improve
Started by
Jackiefff
, Feb 02 2009 04:10 AM
3 replies to this topic
Top#2
wheeliebear75
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Posted 02 February 2009 - 08:29 AM
I have not had to have any additional surgeries since my initial hospital stay.......though I may have to go in for some hardware later. ;) I hope things will finally start to look up for you. 
*Enjoy every sunset, but be grateful for every dawn.*
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*Wheelchairs are made of a special ocular magnetic alloy......they're "eyeball magnets".*
*I USE a wheelchair, that does NOT make ME a wheelchair!*
#4
Kelly Thompson
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Posted 18 June 2009 - 06:06 PM
Hi there, I'm new here but thought I woudl reply to this one.
Because you have had several other surgeries, be aware of the risks of having more. I had a surgery in 98 which led to complications and multiple shunts and shunt revisions. I had three more surgeries within a month and a half. This depleted my immune system and I developed an infection in my spinal cord. It was this infection, not the syrinx that left me a paraplegic from that point down. If you must have surgery, get your mind and body as healthy as possible beforehand. As for the increase in symptoms...about three years ago, I suddenly had a change in my symptoms. I had severe pain, weakness and numbness down the back of my left arm. My last two fingers were numb and tingly all the time. I nearly lost motor function completely. I learned that I had another huge syrinx from C5 to T4. It scared the hell out me. But surgery was not high on my list of options.
I figured out that my symptoms were worse if I had been looking down a lot that day or the day before (reading, taking notes in class, etc). I really focused on NOT looking down unless I had to. I got a headrest to help remind me to put my head back, not forward. I also ate healthier and exercised as much as I was able. After a few months, I recovered, much to the Neuro's shock. I still have the syrinx, and it appears to be growing, but now I have time to really think about the risks of surgery. The last one paralyzed me from that point down, and this one is in my neck. It is true that the pain is pretty intense, but it is also the psychological effects of not knowing if or when it will end. I take Lyrica for the burning. Baclofen for the Spasms, and Norco for the general aching pain that just wont leave sometimes, especially in my shoulder and neck. I put ice on my spine to reduce swelling and calm nerves. Its been a few years and I have adapted. I am back in school and finished my masters degree and am looking at a PhD. I still can't work more than a few days a week, because lifting my chair in the car is hard on my neck and arms. I choose school programs that fit my scheduling needs. But my life is going on.
Find a pain specialist, I did not feel validated by any doctor until I found my current doc. My last pain doc didn't like narcotics (so why be a pain doc?). When I told the new doc that the last one was not comfortable treating my pain with narcotics, her response was "I can't understand why he WOULDN'T, you are the reason for Pain meds!" She knows I don't want to be a dope head at 37, so she treats me conservatively, which I appreciate. But she understands when I tell her I am in a 'pain storm' and feel like I am going to lose my mind this time, lol. As with every storm though, it always passes and we have time to recover and rebuild.
Good luck to you, it is now June, I hope that this finds you on the other side of the storm that brought you to post this message in Feb.
Kelly
Because you have had several other surgeries, be aware of the risks of having more. I had a surgery in 98 which led to complications and multiple shunts and shunt revisions. I had three more surgeries within a month and a half. This depleted my immune system and I developed an infection in my spinal cord. It was this infection, not the syrinx that left me a paraplegic from that point down. If you must have surgery, get your mind and body as healthy as possible beforehand. As for the increase in symptoms...about three years ago, I suddenly had a change in my symptoms. I had severe pain, weakness and numbness down the back of my left arm. My last two fingers were numb and tingly all the time. I nearly lost motor function completely. I learned that I had another huge syrinx from C5 to T4. It scared the hell out me. But surgery was not high on my list of options.
I figured out that my symptoms were worse if I had been looking down a lot that day or the day before (reading, taking notes in class, etc). I really focused on NOT looking down unless I had to. I got a headrest to help remind me to put my head back, not forward. I also ate healthier and exercised as much as I was able. After a few months, I recovered, much to the Neuro's shock. I still have the syrinx, and it appears to be growing, but now I have time to really think about the risks of surgery. The last one paralyzed me from that point down, and this one is in my neck. It is true that the pain is pretty intense, but it is also the psychological effects of not knowing if or when it will end. I take Lyrica for the burning. Baclofen for the Spasms, and Norco for the general aching pain that just wont leave sometimes, especially in my shoulder and neck. I put ice on my spine to reduce swelling and calm nerves. Its been a few years and I have adapted. I am back in school and finished my masters degree and am looking at a PhD. I still can't work more than a few days a week, because lifting my chair in the car is hard on my neck and arms. I choose school programs that fit my scheduling needs. But my life is going on.
Find a pain specialist, I did not feel validated by any doctor until I found my current doc. My last pain doc didn't like narcotics (so why be a pain doc?). When I told the new doc that the last one was not comfortable treating my pain with narcotics, her response was "I can't understand why he WOULDN'T, you are the reason for Pain meds!" She knows I don't want to be a dope head at 37, so she treats me conservatively, which I appreciate. But she understands when I tell her I am in a 'pain storm' and feel like I am going to lose my mind this time, lol. As with every storm though, it always passes and we have time to recover and rebuild.
Good luck to you, it is now June, I hope that this finds you on the other side of the storm that brought you to post this message in Feb.
Kelly
Jackiefff, on Feb 1 2009, 09:10 PM, said:
i had the inital surgery when i first found out i had it, in nov 07, only 3 months after my accident. it did improve but i still had alot of pain in my wrist so i had another surgery dec 30, 07 and they sent me home about after a day or 2 home i realized my arm was really hyper sensitive again and then i had burning pain in my back as to where i couldnt even lay down to sleep.. so i went back up to iowa city.. and they wanted to wait to do anything but said the syrinyx was worse. now i am loosing strength and hand function in my left hand along with more numbness in my left side on my chest.. i told them and they did another MRI a week or 2 ago and i do have a appt in 2 weeks but i just feel like i cant wait that long. this is just ruining everything, im thinking i wont get my hand strength and function back, i had some numbness before my 1st surgery and it never came back, im in school and really cant afford to miss but i have no choice!!
im just soo down and soo depressed over this.. has anyone had this same problem? and advice?
they put a shunt in the first time and put another one in this last surgery and its just not working...
you can google Syringomyelia for some info to understand it further
im just soo down and soo depressed over this.. has anyone had this same problem? and advice?
they put a shunt in the first time and put another one in this last surgery and its just not working...
you can google Syringomyelia for some info to understand it further
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