I had a spinal fusion three years ago, shortly after an orthopaedic surgeon told me it was all in my mind and that I had a low pain threshhold. The neuro fellow I subsequently insisted on seeing did an MRI which shoed no disc at L5/S1, and degeneration elsewhere. After that things went from bad to worse. the neuro fellow kept saying I was fine. I kept suffering awful pain. Like you I could always touch my flaming toes, because I am hypermobile. I was the kid at school who could do the spilts, the crab, handstands, handsprings, etc. Fat lot of good it did me!! But I do not have arthritis, or rheumatism, and I am not stiff, I just have nerve pain which is aweful. To be double jointed is certainly not a gift. So I am being treated for neuropathy, and eventually reach the top of the list for a spinal stimulator for pain relief.
Eighteen months after my neurosurgeon devoutly denied that anything might be wrong, all my abdominal organs tried to leave my body by a southern route. Bladder, uterus, etc etc etc four in all. I had them all repaired. Then exactly a year later my bowel finally packed up, it had been trying very hard to do so for a long time. I have just come out of hospital having had four feet of colon removed. Twelve days post op. and I have permanent runs. I know anyway the rest of it is not working and I will have to go back in the new year and have an implant to provide electric impulse, to help whats left.
Apparently I have spinal stenosis. I also have DDD. Nobody likes putting a name to anything, because as soon as they do, they are opening the floodgates for dollars/sterling to be spent on your condition. I have been desperate for someone to tell me what is wrong with me because I felt like a hypochondriac. When I went into hospital this last time I expected five inches of bowel to be removed. After the op, when the surgeon came to see me and I asked him, he held his hands far apart. I got such a shock. Nearly all of my colon had been removed. if not all. I have had permanent D. ever since. I never ever thought I would have to worry about maintaining my weight. but hey. Suddenly I do, and its not nice, all I can manage is mashed spuds and gravy.
My neck is also going which has an effect on my left arm, and hand which I notice especially as I play the piano. Also I will not be able to carry anything for a long time, or even drive the car. I am Lucky though because finally I have landed with a good team of docs who work together, and who consult each other every step of the way. I must admit the original spine neuro does not belong to that team. He was arrogant, and money orientated, and I had issues with him which enter into another chapter altogether.!!
What am I trying to say. It annoyed me when the neuro would do these stupid sciatic nerve stretch tests. I could put my leg up around my ear on a good day, which at 55 is not bad.! Even after spinal fusion I could bend over and place hands flat on ground without bending knees. I am supple. Also, I can collapse at the local newsagents with an electrical sciatic storm, or just be in agony for a whole day with nerve pain. Where is the logic.!!
The thing is, a lot of these docs dont understand, they dont have the patience, the empathy, the tolerance level, and they are over worked!.
I am lucky. My lot listen to me, (most of the time.) small country town you see!!#
FOOD. Suddenly I can only eat nursery food. Well thats ok by me. I'm not a gastronome anyway.
OK I've gone on a lot about me. I didnt mean to. But take good heart. There are a lot of us out here.
Got to go to bed now
take care.
M.x