My story will have to come in installments as I have a 52-year back history. No I am not 110; I am 63 and not afraid to tell it. My story began with a trip to the circus when I was 11 years old. The seats fell and I was on the top seat of the old bleacher type seats in a tent circus. Unfortunately I never received a dime in compensation. Just a life long memory of the circus.

The fall popped the disc at L5-S1 on both sides. My parents weren't much on doctors and in those days they didn't do much to backs. I was in muscle spasms and pain quite a lot all through my teen years. Pain just about all the time and spasms to where I couldn't straighten up for 2-3 weeks periodically.

Finally at 17 or 18 I went to a doctor and started a 10 to 12 year round of trying to convince them something was wrong with my back besides muscle weakness and poor posture. Finally when the two vertebra were rubbing together and I couldn't walk with out my knees buckling they decided something must be wrong with my back.

Next came surgery #1, a 6-hour spinal fusion. The goop from the disc had run out onto the nerve roots. Most of the surgery time was spent trying to remove as much of it as possible without damaging the nerves. I was left with a lot of scar tissue on my nerve roots. There was a lot of improvement with this surgery particularly with my ability to stand without a lot of pain. About 7 years later the disc at L4-5 went. I put up with that for several more years and finally had surgery. They only removed part of the disc and fused. They also put in knot rods. It was a lousy doctor and that surgery didn't improve matters much. First off I didn't fuse and within a matter of months the rods were loose and irritating the spinal cord. He sent me to a specialist at the Univ. of Texas Med. school in Dallas. We were living nearby at the time. He recommended the rods be removed. But my doctor said he had never had to remove any rods because of the way he put them in. So I said I was going to have the specialist remove them. That was surgery #3.

That still didn't help too much and they decided I needed an anterior fusion. They could not fuse from the back as it had already been done. In the meantime I had stress fractures of both feet. When the doctor got a look at that he said I had to have a biopsy on the hip crest to check for osteoporosis. Of course I had it. So I had to wait for treatment to take effect, as you will not fuse well if you have osteoporosis. During that time my back got really really bad. They wouldn't x-ray it, as they knew the rest of disc 4-5 was ruptured and I was waiting for surgery. The pain was so bad I was on strong meds and still burned my legs and back with the heating pad. Finally surgery #4 and guess what, the vertebra was fractured and had been for a while. That accounted for the pain escalation. I realize now that is when the CES type symptoms started.

The first one was the bones you actually sit on started hurting when I was laying down only. I thought that was strange but every night they would hurt and pain meds didn't help. They still do hurt 15 years later and now it hurts when I sit too. Even now the sciatica is worse lying down. It must put pressure on the wrong place. Also when my bladder starts filling while I am laying down the sciatica gets worse and worse until I get up and empty it. It is what wakes me up every morning. I have to get up and sit bent over for an hour or two until it calms down enough that I can function. Also after that surgery is when the incontinence started. More about that in a later post. Last summer I had surgery#5, a decompression laminectomy. It hasn't helped even a smidgen. And I still have the same diagnosis as before. Moderate spinal stenosis.

Through all of this I have never had the support I am hoping for from you. I always found a way to keep going and everyone would say oh yes I have a back problem too. My sister is always telling me her back hurts too but she does it anyway. I already feel inferior because of the functions I am losing and that really tops it off. So having someone who really understands will be a blessing for me. I know this is long but thank you for taking the time to read it. I have a number of questions I will be asking of you in the future.


Desert Rose