Spinal Headaches

[deb]

Hey everyone - I have not posted for awhile but I am at my wits end and I know someone out there can perhaps help me or at least just listen. My first spinal cord tumor (meningioma) was removed in1998 (C2-T1) and I seemed to be back on the road to recovery right away. Unfortunately the tumor came back and I was operated on again in 8/07 in the same area just a little larger tumor (C1-T3). I developed a Spinal Cord Leak and was hospitalized and reoperated on in October to repair the leak. The leak has never gone away 100% so I have spinal cord headaches in which the only relief comes from laying flat. The MRI's show that there is a decreased amount of fluid that is circulating around the brain and that is why I am having the headaches....They have also tried blood patches (had 3 of them this summer) to see if there would be any relief and they did not work. My NS tells me that the leak will eventually disapate but because I am diabetic, my body does not heal the same as a non-diabetic. There is still some residual tumor left that they are monitoring but will not see the NS until December. I am seeing the Neurologist/Pain Mgmt department at the University Hospital in Madison right now for relief of the headaches and will go back again mid-September to see if there is something else that can be done. I am wondering if anyone else has had anything like this post surgery. I do not think they can operate on the same area again since each time they do I develope more scar tissue and the spinal cord is compromised. Anything you can tell me would be greatly appreciated as I am really frustrated and do not know where to turn. Thanks for listening to me rant.

[shannan]

All I can say is hang in there and I hope that the healing will occur soon. After my surgery I had some of the headaches you speak of. I had to keep a cold cloth over my eyes and would have to tense up a bit to keep from moving, even breathing would hurt and cause nausea. During one I began vomitting and was rushed for a CT scan, apparently too much fluid was being drained via the drainage tube post surgery. I also had quite a few unexpected complications with deterioration discovered during my surgery where part of my cord required a patch which took additional time to heal and leakage from this was expected. Thankfully the patch took, the drainage problem was easily fixed and I healed relatively quickly after that and the headaches subsided. Hopefully, your healing will not take much longer. I will keep you in my thoughts.

[throeback]

First off I would find another NS. CSF leaks should NEVER HAPPEN AFTER SURGERY. Doctor error is to blame here 8 out of 10 times. Lets be honest even the mighty NS's of our times are prone to miscalculations as they are entirely 'human' and you know what that implies. I would not just find a new NS I would go out of my way to FIRE the old one...... "thats right you schmuck your fired!!!" Find a new one and fast. In the interim drink lots of water, insane amounts of it really. Lay down when things get rough with the spinal headaches. Hope this was of some help.

,,,,,,,,Throeback........

[otjenn]

I also had severe headaches after my second surgery that the Docs could not pinpoint the problem...therefore, it was all in my head. Actually, I was upright for too long the day after surgery and had over stretched my dura (the material that surrounds the spinal cord and brain). Of course my brother, a physical therapist, discovered this...not any of my Docs...even up at Mayo. I did not have a leak but due to the previous scarring and position I was in after surgery, I caused damage/over stretching that caused migraines/headaches like I'd never experienced. If you can find a PT that has experience with nerve flossing/gliding, you may find some relief....if the Dr. OK's it and only if the leak has resolved. Hope this helps. Jenn