Post by drex on Nov 9, 2013 11:36:46 GMT -6
Hi everyone,
Just wanted to post a positive story for you. I joined this board months ago but just made one post with my story. Back then it was thought I had a hemangioblastoma but after surgery it ended up being an ependymoma. I am a 26 year old female, living in Canada and had my surgery at a hospital in the city I live in.
The symptom that finally made me go to the doctor was weakness in my right arm which I'd had for years and thought nothing of, but was now getting worse and I was starting to notice it becoming difficult to do certain things. I also had some mild numbness on my left side.
On October 15 I had the surgery to remove it, which went very well. When I woke up from surgery the first thing I noticed was that my right arm was numb, but other than that I felt ok and could move everything. In the coming days I noticed that my legs had a numb sensation below the knees, but I could feel when they did those lovely pinprick tests. Over the next week that gradually got much better and now I just have slight numbness in my left foot.
After surgery I had trouble walking but walked with a walker the day after surgery. My left leg didn't know what it was doing and wasn't going in the correct spot but that's something that's resolved itself as well.
My neck was extremely stiff after surgery and I couldn't really move it at all. It's gotten much better since then but it's still very stiff. My surgeon said it would take several months but it should return to normal.
Six days after surgery I went to an inpatient rehab for spinal cord injuries. I spent the week there where I went from being in a wheelchair due to my legs being weak, to a walker, to a cane and finally walking on my own by the end of the week. I was allowed to go home that weekend, returning Sunday night and discharged on the Wednesday. I still go to physio once a week to work on my arm and some advanced balance exercises.
Medication-wise I was just taking regular tylonol by a week after surgery and now don't require any pain meds.
I am fortunate not to have any bladder or bowel problems though I think possibly I had increased urgency if I hold it too long, but no big deal.
As of now my right arm is still worse than before surgery but the strength is improved from before surgery. Mostly it's just that the muscles are really tight. My right hand also has poor dexterity. After surgery I had trouble holding cutlery and couldn't hold a pen to write. Now I can do both but though I still have trouble gripping a pen, I can write - it's just messier. This is still getting better each day.
Regarding the surgery itself, my hospital recently acquired an intra-operative MRI machine, which is the first in Canada and I believe the 7th in North America. My neurosurgeon told me it is typically used for brain surgery, but had used it for a few spinal tumor surgeries before mine. In my case it came in very handy. They removed the tumor and did the MRI where it showed there was still some residual tumor remaining. They continued the surgery and (hopefully) got the rest out. My surgeon said they weren't too aggressive with it because it was pressing against the front of my cord and there wasn't much spinal cord left. He said I would have been paralyzed had they just scooped it out. I'll be having another MRI in about a month to make sure they got it all, which I hope to god they did because I really don't want to have radiation.
So overall the surgery went extremely well and I feel so lucky to have come out the other side intact. I feel positive that my arm will continue to get better and I'm hopeful that it will at least return to my pre-surgery functioning and it would be a bonus if it got better than that.
I'll keep you guys posted and if anyone going through this diagnosis wants to message me I would love to be of help!
Just wanted to post a positive story for you. I joined this board months ago but just made one post with my story. Back then it was thought I had a hemangioblastoma but after surgery it ended up being an ependymoma. I am a 26 year old female, living in Canada and had my surgery at a hospital in the city I live in.
The symptom that finally made me go to the doctor was weakness in my right arm which I'd had for years and thought nothing of, but was now getting worse and I was starting to notice it becoming difficult to do certain things. I also had some mild numbness on my left side.
On October 15 I had the surgery to remove it, which went very well. When I woke up from surgery the first thing I noticed was that my right arm was numb, but other than that I felt ok and could move everything. In the coming days I noticed that my legs had a numb sensation below the knees, but I could feel when they did those lovely pinprick tests. Over the next week that gradually got much better and now I just have slight numbness in my left foot.
After surgery I had trouble walking but walked with a walker the day after surgery. My left leg didn't know what it was doing and wasn't going in the correct spot but that's something that's resolved itself as well.
My neck was extremely stiff after surgery and I couldn't really move it at all. It's gotten much better since then but it's still very stiff. My surgeon said it would take several months but it should return to normal.
Six days after surgery I went to an inpatient rehab for spinal cord injuries. I spent the week there where I went from being in a wheelchair due to my legs being weak, to a walker, to a cane and finally walking on my own by the end of the week. I was allowed to go home that weekend, returning Sunday night and discharged on the Wednesday. I still go to physio once a week to work on my arm and some advanced balance exercises.
Medication-wise I was just taking regular tylonol by a week after surgery and now don't require any pain meds.
I am fortunate not to have any bladder or bowel problems though I think possibly I had increased urgency if I hold it too long, but no big deal.
As of now my right arm is still worse than before surgery but the strength is improved from before surgery. Mostly it's just that the muscles are really tight. My right hand also has poor dexterity. After surgery I had trouble holding cutlery and couldn't hold a pen to write. Now I can do both but though I still have trouble gripping a pen, I can write - it's just messier. This is still getting better each day.
Regarding the surgery itself, my hospital recently acquired an intra-operative MRI machine, which is the first in Canada and I believe the 7th in North America. My neurosurgeon told me it is typically used for brain surgery, but had used it for a few spinal tumor surgeries before mine. In my case it came in very handy. They removed the tumor and did the MRI where it showed there was still some residual tumor remaining. They continued the surgery and (hopefully) got the rest out. My surgeon said they weren't too aggressive with it because it was pressing against the front of my cord and there wasn't much spinal cord left. He said I would have been paralyzed had they just scooped it out. I'll be having another MRI in about a month to make sure they got it all, which I hope to god they did because I really don't want to have radiation.
So overall the surgery went extremely well and I feel so lucky to have come out the other side intact. I feel positive that my arm will continue to get better and I'm hopeful that it will at least return to my pre-surgery functioning and it would be a bonus if it got better than that.
I'll keep you guys posted and if anyone going through this diagnosis wants to message me I would love to be of help!