Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Being nosey here, how long did the surgery take and what was your immediate recovery like. I'm due to have surgery in February and trying to get as much information together as possible Carey Hove UK > > I just had my Diastematomyelia operated on 9/28/2004, which was caused by > a small piece of bone (or septum) that split the cord into 2 parts. When > the bone was removed, my doctor then untethered my spinal cord. I am > still in the recovery stage, but doing very well. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Hi Carey, The surgery took 8 hours! It was scheduled to be 3-4 hours, so that was a bit of a surprise. I did get the surgical report if you are 'really' interested in the process - just let me know and I'll send you bits via private email. Basically, they removed the 'septum' (tiny bone which separated the spinal cord into two) then very carefully untethered the spinal cord. The first 3 days in the hospital were a bear! I was initially unable to get even a remote level of pain control -- which really makes recovery difficult. Finally got a nurse instructor and student nurse who took the time to get me on the road to recovery. I was in the hospital for 4 days total and left still attached to a Foley cath (unable to completely empty). At 4 weeks recovery I am still on quite a bit of pain medication but getting ready to start weaning off very carefully. Next week I begin physical therapy -- although even now I am able to walk (broken up into 3 parts) a whole mile unaided by cane or crutches!!! The catheter is gone although I continue to see the urologist for the time being. Hang in there and let me know if you have any other questions. Recovery is difficult but I am recovering. My goal is to participate in our local 5K charity run this 4th of July. Diagnosed incorectly with polio, and spending my whole life with problems, I was never able to run. So... that is my dream/goal. I think having some goal (no matter how silly) helps keep you motivated towards recovery. <<hugs>> > > Being nosey here, how long did the surgery take and what was your > immediate recovery like. > I'm due to have surgery in February and trying to get as much > information together as possible > > Carey > Hove UK > > > > > > I just had my Diastematomyelia operated on 9/28/2004, which was > caused by > > a small piece of bone (or septum) that split the cord into 2 > parts. When > > the bone was removed, my doctor then untethered my spinal cord. I > am > > still in the recovery stage, but doing very well. > > > > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email > kathy@...,michelle@..., > rick@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Hi there, I don't have diastematolmyelia, but, since my surgery in 2002, my MRI report notes that I do have it. This is because of the angle of the MRI and the exaggerated Lordosis that I have; the image of my filum terminale overlaps the image of L1-L4 and appears to dissect that area of my lumbar spine. My neurosurgeon, says I have it " like hell " he's been in there and seen with his own eyes that I do not have diastematolmyelia. I just thought this would be interesting to some people because imaging is not the perfect diagnostic tool. The MRI also did not show my adhesive arachnoiditis, that was discovered during surgery. There is always the possibility of surprises during surgery, I wasn't ready for that - I found it profoundly disturbing to hear the reality of my situation post-op. Take care, V. Ontario, Canada > Hi...I am an adult with this condition, and would like to speak to anyone who > has it...thanks... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Thank you so much for your details and it sound like such a painful procedure and recovery! It's taken a great deal of time to reach a decision to have surgery and when I get good days, I'm ready to contact the NS and cancel. BUT Life at the moment is unbearable and I want a chance to make it better so surgery is my only option as medication isn't doing the job. Thank you for your offer to send the surgical report - YES PLEASE SEND IT! My email addy is under my member name. This may sound odd but the more I know what surgery COULD be like for me, the more I can mentally prepare myself for what lays ahead. I'm sure you'll achieve your aim and run that 5k charity run, a positive attitude can do wonders for your recovery! Carey Hove UK > > > Hi Carey, > > The surgery took 8 hours! It was scheduled to be 3-4 hours, so that was a > bit of a surprise. I did get the surgical report if you are 'really' > interested in the process - just let me know and I'll send you bits via > private email. > > Basically, they removed the 'septum' (tiny bone which separated the spinal > cord into two) then very carefully untethered the spinal cord. > > The first 3 days in the hospital were a bear! I was initially unable to > get even a remote level of pain control -- which really makes recovery > difficult. Finally got a nurse instructor and student nurse who took the > time to get me on the road to recovery. > > I was in the hospital for 4 days total and left still attached to a Foley > cath (unable to completely empty). > > At 4 weeks recovery I am still on quite a bit of pain medication but > getting ready to start weaning off very carefully. Next week I begin > physical therapy -- although even now I am able to walk (broken up into 3 > parts) a whole mile unaided by cane or crutches!!! The catheter is gone > although I continue to see the urologist for the time being. > > Hang in there and let me know if you have any other questions. Recovery > is difficult but I am recovering. My goal is to participate in our local > 5K charity run this 4th of July. Diagnosed incorectly with polio, and > spending my whole life with problems, I was never able to run. So... that > is my dream/goal. I think having some goal (no matter how silly) helps > keep you motivated towards recovery. > > <<hugs>> > > > > Quote Link to comment Share on other sites More sharing options...
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