[pinkfloyd2388]

I had Laminectomy S2 - S4 for Caueda Equina Syndrome Jan 19th I've had two attempts to fix the Dura, a fat pad with super glue and a lumbar drain for 5 days, I at one point was literally leaking spinal fluid out of my wound, at this point no docs will touch me, as I'm leaking spinal fluid AGAIN I have connective tissue disorder... I feel like I've had everything but a shunt tried and because the doctors attitude is I'm going to just leak again they refuse to touch me - anyone know someone - please? I'm having horrible posture headaches and not functioning... Thanks - Fawn

[Jomar]

There has to be someone that will help you.. Have you tried to email various doctors at some teaching hospitals and ask for help? it can't hurt...
Send some of your basic case & treatments info , you never know, someone might take an interest.

[Spiney95]

I am surprised you haven't killed someone yet. I have had several spinal leaks and know what the pain is like in an upright position. Have you talked wth your primary and asked him/her to advocate for you? You can't stay in bed indeffinately, hoping it will heal on its own. Perhaps your primary can get you a second opinion. I am all for going to the teaching hospitals and accessing the super surgeons but some of them are a pain in the butt when a post op problem pops up. The last time I had surgery, I got post op staph and the surgeon said that was impossilbe as he has NEVER had a patient who got an infection. LIAR!!!!! Not if he has been in practice for 20 years. He ended up dropping me without a single follow up check up. I wasn't trying to make trouble, just notify him. Those things happen. Besides, I had no idea who really did the work as he has an army of doctors doing their fellowship under him. Once you go to sleep, you don't really know who is doing the work or if your surgeon is even in the OR supervising. Best wishes.

[pinkfloyd2388]

I started at teaching hospital, and have stayed at one. My first surgeon dropped me after I told him to basically go screw himself because he forgot I had connective tissue disorder and repeatedly refused to do a thing. I had to hurry and find a new surgeon and I did but had to have two surgeries within a week, I'm only a month and half out and the hospital I usually go through claims it's something I can live with I can't stand/sit for longer than 20 minutes without having to lay down or passing out. I live outside of Boston, supposedly one of the best but just have gotten passed around. My latest doctor discharged me and said I was a 'psych case' I was like um so brain is telling my dura to tear and leak because its fun, no this is pure ****. I just wish this wasn't something that would repeat itself again and again...

[Spiney95]

Why am I not surprised? I may be wrong but the docs at the teaching hospitals seemed to stick together. I would be told that if doctor "so and so" says something is true, it must be so without persuing the matter. They would not accept information sent from my home town and was told that if my doctors were any good, they would be working out of a teaching hospital. If for no other reason, I refuse to have anymore spinal surgery, regardless of how I feel and decreasing level of function. Best wishes.