Post by chickiet on Feb 19, 2008 21:24:04 GMT -6
All,
I first found the site and joined as a new member back in late September/early October 2007. I was diagnosed with an intramedullary SCT at C6 and associated syrinx at T1. I had my first surgery to attempt to remove my SCT on 9/6/07. During surgery my evoked potentials tanked and they had to abort the surgery because they had not yet gotten to the tumor and feared I'd be paralyzed. Fortunately I was not.
I was planning to post before my next surgery, which was on 11/13/07 - but of course that was when the board was having problems and was actually down for a while, even the night before my surgery.
Anyway, the second surgery resulted in successful resection of the tumor. The biopsy came back as a Grade II intramedullary ependymoma.
My subsequent MRI shows that the syrinx is still there, as is the cyst cavity that surrounded the tumor. I'm hoping that those will go away or at least decrease in size over time - but I don't know. Does anybody have any experience with imtramedullary cysts and syrinxes??
I am currently on Lyrica - just switched over from Neurontin. I really thought that the Neurontin was doing nothing for me until my pain mgt doc had me wean off the Neurontin most of the way and then start on a low initial dose of the Lyrica. At that point I found out that it was providing some benefit, because the pain got quite a bit worse! I've been bumped up on the Lyrica once and have another follow-up this Friday (2/21).
I'm still looking for/hoping for something that will help with the pain in my feet that worsens over the course of the day (and is exponentially worse if I walk much). Lyrica and Celebrex are the only meds I'm currently on - not sure the Celebrex is doing anything at all.
I have many of the symptoms that we all see on the posts - some numbness from the chest down, bowel & bladder issues, stiffness, stabbing pains, electrical pulsations, etc. I can accept most of them but the foot pain is pretty limiting.
I am not particularly athletic, and have to admit that I've slacked off on the exercise regimen that I know I need to be doing. But the one activity that I've enjoyed doing is walking - and that's now very difficult. I currently can walk up to 1.5 miles per day but my feet really yell at me at night if I've gone that far (they yell a little quieter if I walk less). Yes - I know I shouldn't complain - - I can walk. But I was hoping to once again participate in a 20-mile charity walk that my husband and I do to benefit the American Foundation for Suicide Prevention (we lost a son to suicide 2 1/2 years ago). The walk has been good for us emotionally, and I know that doing the walk the past 2 years helped my recovery from these surgeries, as my leg muscles were very strong.
So - I'm bummed that I need to accept that I won't be able to do the walk (it's in June). I can "help out" in various ways, but it's not going to be the same as actually walking.
Sorry to be complaining - I guess I'm grieving the old me - - the one who had reasonable stamina & energy, could train to walk 20 miles, and didn't have to wonder what the next mri would bring (not to mention the extra 35 pounds I'm carrying around...).
I know I shouldn't complain - after having my surgeries and follow-up appts at Walter Reed Army Medical Center and seeing those young kids with missing limbs, etc., I can't feel too sorry for myself. But I still get depressed and frustrated about my "new normal." I can hope that my symptoms will improve over time but I also know that they may not change much, if at all. People keep asking me if I'm feeling better and I'm so tired of telling them that I'm not.
Thanks for letting me vent. If anyone has any suggestions or comments re: the syrinx / cyst thing and/or other pain mgt options to ask about at my next appointment, I'd appreciate it.
Thanks,
Chris
I first found the site and joined as a new member back in late September/early October 2007. I was diagnosed with an intramedullary SCT at C6 and associated syrinx at T1. I had my first surgery to attempt to remove my SCT on 9/6/07. During surgery my evoked potentials tanked and they had to abort the surgery because they had not yet gotten to the tumor and feared I'd be paralyzed. Fortunately I was not.
I was planning to post before my next surgery, which was on 11/13/07 - but of course that was when the board was having problems and was actually down for a while, even the night before my surgery.
Anyway, the second surgery resulted in successful resection of the tumor. The biopsy came back as a Grade II intramedullary ependymoma.
My subsequent MRI shows that the syrinx is still there, as is the cyst cavity that surrounded the tumor. I'm hoping that those will go away or at least decrease in size over time - but I don't know. Does anybody have any experience with imtramedullary cysts and syrinxes??
I am currently on Lyrica - just switched over from Neurontin. I really thought that the Neurontin was doing nothing for me until my pain mgt doc had me wean off the Neurontin most of the way and then start on a low initial dose of the Lyrica. At that point I found out that it was providing some benefit, because the pain got quite a bit worse! I've been bumped up on the Lyrica once and have another follow-up this Friday (2/21).
I'm still looking for/hoping for something that will help with the pain in my feet that worsens over the course of the day (and is exponentially worse if I walk much). Lyrica and Celebrex are the only meds I'm currently on - not sure the Celebrex is doing anything at all.
I have many of the symptoms that we all see on the posts - some numbness from the chest down, bowel & bladder issues, stiffness, stabbing pains, electrical pulsations, etc. I can accept most of them but the foot pain is pretty limiting.
I am not particularly athletic, and have to admit that I've slacked off on the exercise regimen that I know I need to be doing. But the one activity that I've enjoyed doing is walking - and that's now very difficult. I currently can walk up to 1.5 miles per day but my feet really yell at me at night if I've gone that far (they yell a little quieter if I walk less). Yes - I know I shouldn't complain - - I can walk. But I was hoping to once again participate in a 20-mile charity walk that my husband and I do to benefit the American Foundation for Suicide Prevention (we lost a son to suicide 2 1/2 years ago). The walk has been good for us emotionally, and I know that doing the walk the past 2 years helped my recovery from these surgeries, as my leg muscles were very strong.
So - I'm bummed that I need to accept that I won't be able to do the walk (it's in June). I can "help out" in various ways, but it's not going to be the same as actually walking.
Sorry to be complaining - I guess I'm grieving the old me - - the one who had reasonable stamina & energy, could train to walk 20 miles, and didn't have to wonder what the next mri would bring (not to mention the extra 35 pounds I'm carrying around...).
I know I shouldn't complain - after having my surgeries and follow-up appts at Walter Reed Army Medical Center and seeing those young kids with missing limbs, etc., I can't feel too sorry for myself. But I still get depressed and frustrated about my "new normal." I can hope that my symptoms will improve over time but I also know that they may not change much, if at all. People keep asking me if I'm feeling better and I'm so tired of telling them that I'm not.
Thanks for letting me vent. If anyone has any suggestions or comments re: the syrinx / cyst thing and/or other pain mgt options to ask about at my next appointment, I'd appreciate it.
Thanks,
Chris
