Please welcome Beverly Murphy from Florida

Please welcome our new member, Beverly Murphy, of Florida. Beverly's email address is BEVTMURPHY@AOL.COM

Beverly writes:

"Experienced pain in left hip for several years and diagnosed with piriformis syndrome and trochanteric bursitis. Received numerous steroid injections for those over the same period. Finally, an MRI was done and revealed a very large herniated disc at L5-S1. Consulted neurosurgeon and he said the bad disc was pinching the nerves and recommended a laminectomy. Had it done in April, 2001. Within 5 days they had to re-explore and do a repeat laminectomy for additional disc fragment. Never improved so had fusion from L4-S1 in early December 2001. Ten days later when they went to take out the staples they found a serious CSF leak that had nearly burst through the surface. Surgery was done immediately to repair the leak. 2 months later I started with a horrible headache. but the neurosurgeon sent me to their group's neurologist who felt it was a migraine. I had checked that I do get migraines, but the Dr. would not allow me to explain they only occurred when I was getting off or on my hormones AND playing soccer in high heat - running at least 5 miles in a game. To sum up, I called in a favor and got into a physician in Gainesville who got the neuroradiologists to review the MRI. They said it was STILL a CSF leak. Before I had the chance to go up there to have it fixed, it got so large it began creating a cauda equina episode and the neurosurgeon here fixed it with a synthetic patch. 2 months later, another CSF showed up, this time they fixed it with a fascia latte graft from my thigh, kept me flat for 5 days with a drain in place to keep the spinal fluid pressure low. That was the 6th surgery in 13 months, and I looked like a skeleton by then and could barely function. I kept working until December, 2008, when I was fired from the place I had worked for 30 years. I just couldn't function at that level anymore. I never had 'back' pain, just pain in my left leg and thigh. That is gone, now I have similar pain in the RIGHT leg and thigh, terrible pain in my right foot that it is being crushed, electric charges coursing up and down my right leg and severe shocking sensations in my right leg and foot. The left foot and leg weren't so bad, but the pain specialists I have tried all wanted to inject the left too, so now it is experiencing all the same symptoms in an alarmingly increasing pattern.

I really liked my job, and sought help from about everywhere I knew to go: Massachusetts General Hospital (Harvard) doc actually told me I was just depressed. REALLY! This was shortly after the 6th surgery and I was so beaten down I could hardly walked. I wrote him back and told him his comments were similar to those made by physicians to women about their 'female hysterias back in the 1800s and he should be ashamed of himself that was all he could come up with. He didn't even examine me! Don't bother to go there!

I went to Shands Neurology affiliated with the University of Florida, and they were kind, but didn't have any suggestions.

Same story with the Cleveland Clinic near West Palm Beach. No suggestions other than to try the meds I'd already tried - neurontin and other drugs in that category, elavil, topomax, etc. All of them just made me loopy, sleepy, depressed and didn't do anything for the pain.

I went to West Palm for prolotherapy (which insurance doesn't pay for). That was huge waste of money and hurt so bad to have it done, and hurt for days after each treatment. He also ablated one of the nerves with electrical current, but I can't tell any difference. He tried numerous facet injections, epidural injection, SI injections. Nothing helped AT ALL!

Tried another pain specialist in Bradenton who tried more injections in all the same places, and a few more. No results. He wanted to try a spinal cord stimulator, so I had the psych exam for that and a trial of one. It hurt something awful to have it put in, and hurt so bad I couldn't even breathe for at least 2 days. I just lay on the couch and cried. They could never get the device to send signals below my knees, so it was a useless endeavor. I was told my anatomy was no longer normal, and they would not be able to help.

I sought advice from one more doctor, a neurosurgeon in Naples. He was very kind and patient, probably because I knew his parents. He opened up enough to say that he, and all neurosurgeons, eventually have a few patients end up like me. Ones that everything goes wrong with for no apparent reason and they are left much worse than when they started seeking medical assistance. He also said that no one would operate on my back again (in his opinion) and if I got someone to it wouldn't help anyway.

I do pretty well with meds, my control nature keeps me from taking even the full amount of percocet they prescribe. It seems that it works better if you take it only when you really need it, and you get tolerant if you take too much. Also take medicine to sleep as the leg pain increases when I lay down. I take Skelaxin, but it doesn't seem to help the muscle spasms. My lower legs lock up during the night into spasms that curl my toes and make my feet point in or sometimes down. Getting up in morning and convincing them to walk takes quite a while. I can only wear tennis shoes, and only have one pair of those my feet can tolerate because they are so sensitive. I have to wear socks all the time because my feet just can't stand the feeling of contact with the floors.

Wrapping up this epic tale, HELP! Is everyone else facing these same problems of dealing with the pain, spasms and frustrations that no one can help you? Is there anything positive out there, or a direction we can take to make us feel like we're doing SOMETHING to help ourselves?This is very frustrating. I was a professional in the health care administration field so have had good contacts. That hasn't helped me either and I'm just at the end of the road.

I also applied for SS disability last week, but it sounds like they will take forever to review it. Any advice on things to do/not do to speed this process through? Guess it's time I got to know other folks in the same boat. I've just spent the past 7 years denying I had a huge problem, but now I'm trying to learn how to deal with it."

LWA