Mangled In The Medical Machine - 3

A lot has happened since I fractured my spine in July of 2005, the doctors have bounced me back and forth, none wanting to address surgery as possible fix to the leg atrophy and pain problem. When you're poz, surgeons don't want to operate, coming up with every sort of excuse. A nurse I spoke with told me in private that surgeons are the most homo and HIV phobics he's dealt with. He also said that in his experience they also have this attitude that people with HIV are not worth expending as much energy on as HIV negative patients.

I had to have an updated MRI of my back done. There's nothing that I enjoy more than laying in the claustrophobic tube of a giant electromagnet for 45 minutes, listening to the rhythmic clanking and bangings of an MRI machine

I had yet another consult with a neurosurgeon last week after the updated MRI was done, the news was not good. The scan shows signs that the spinal cord itself is beginning to waste away at the point of inpingement, that there is additional degradation since the last MRI was taken in December, and now he's telling me whether or not I have surgery, it will be futile since the damage is done and has reached the point where it's irreversible....now he tells me.

He offered to do surgery but first I should get bounced back to the first surgeon I saw 15 months ago, then perhaps move forward....let's toss the hot potato back and forth some more.

I met with my primary care doctor yesterday and got stern with him about doing SOMETHING! He agreed that surgery should have been performed years ago, but nobody seemed concerned that it was necessary. Well it is necessary now since there's a very good chance I will lose the use of both legs, sooner than later, if nothing is done. At this point surgery is the only procedure that will remove the pressure on the spinal cord. I have tried chiropractic, acupuncture and epideral injections of steroids in the spine at the hospital pain clinic. It's strange that a pain clinic is supposed to help reduce pain, and I was one of the unlucky ones for whom the epideral injection made me much worse than better.

When I left my doctor's yesterday he said he will call the neurosurgeon to push things ahead....I hope he keeps to his word on this. If everything moves along, I could be facing surgery in late October to early November.

I spent much more of my time laying down than I did a years ago, my legs are weaker than they were, I'm in much more pain than I was a year ago and I tire very easily. The private insurance company hounds me every so often for more data and when will I be going back to work. From what the doctors have told me, I will not get any better and surgery is a last ditch effort to stop or at least slow down the process.

Over the past 13-15 years when I first began noticing problems with my legs, nobody wanted to address that it was a mechanical problem with two herniated disks, they kept harping on HIV or the meds as culprits in the nerve and muscle damage, that nobody could have the level of atrophy I have from just a back problem. Well I have spoken with a few guys, none who have HIV who had very similar medical problems until surgery was performed. Doctors kept insisting that my muscle wasting was due to HIV directly affecting the nerbes and musles and nothing could be done, but my primary care doctor still disputes this, saying the pattern of my problem does not meet the criteria for HIV induced muslce and nerve damage.

I truly feel mangled in the medical machine today. I'm willing to bet that if I was a rich Rethuglican, politician, sports figureine or some sort of celebrity, they would have been on this problem like flies on shit, the rest of us get to wait in limbo.

As if this writing I have been off all HIV meda for 15 months and for now my viral load is just about undetectable as of last set of labs. I was told my T cell counts and viral load will play a part in the final decision to do surgery, which is another reason surgeons are hesistant to operate, increased risk of infection. I know from past experience that if you want to pick up a nasty infection, spend some time as a patient in a hospital.