Hi Mel,
It's unusual for me to come across someone with a similar problem to mine on this board. I'm quite a bit older than you, just turned 50, but I can tell you my experience.
I had a fusion for scoliosis at age 18. When I first had symptoms, ie, pain, at age 14, I asked my parents to take me to a doctor and they said no, so I naively figured I would just have to wait until I was old enough to be out on my own and take myself to a doctor. Because I didn't get medical intervention when I should have, my severe curve couldn't be corrected very much. After surgery, I still had a 75 degree curve. But it did decrease my pain to a tolerable level.
My fusion was T4-L4, the "standard" at that time, back in 1977. I went on to have three kiRAB, all naturally, without any problems.
Over the years, though, the stress of that huge fused curve finally took its toll on my remaining vertebrae in my lurabar spine. I developed DDD as well as early onset of osteoporosis. I lost 3 inches in height and was having excrutiating pain again. I went to a recommended orthopedic surgeon, who did all the usual tests, sent me to PT, and finally had to admit that he couldn't help me. But he referred me to another spine specialist who, he said, would be the one who could help. He was right. Dr. Van is my hero! He reviewed my case, got together with the head surgeon in his group, and came up with a plan. They offered to do another fusion, going back up into the old area and shoring it up and going all the way down to my sacrum. SounRAB drastic, I know, but I was quickly heading for a wheelchair and was ready to do anything to stop the pain. Dr. Van did a great job, got me back a little bit of the lost height, gave me a bone growth stimulator, got me in with a highly trained specialized physical therapist, and I was fully fused at 6 months post op. Having so much of my spine fused has created new pain, for which I am on pain meRAB and will be forever, but the old pain is gone and I don't see a wheelchair in my foreseeable future. I am not able to work except for a little two-hour-a-day job from home, with an hour break in between my two hours. I'm waiting for disability to be approved, a long and frustrating process.
There is much that I can't do that I'd love to do, but I try to focus on and enjoy those things that I CAN do. There's much in life to experience. Some of them are out for me, but there are plenty of other things. I've never been able to go sledding with my kiRAB or be out there tossing a football, but I'm always on the sidelines being there and cheering them on. I can accept that. I'm very blessed!
I wish I could recommend a good doctor for you, but I'm not familiar with your area. If there's a teaching hospital within driving distance, you might try calling them. Sometimes they have low cost clinics with the same doctors you would see in a private office, and sometimes they'll take on cases that others turn away for teaching purposes. Since yours is an unusual case, they might jump at it.
I do wish you the best. I understand what you're going through. Don't give up! There's a surgeon out there someplace who will know that you can't go back to Shriner's but that you need help! Keep stressing that your previous surgeon was for pediatrics so you can no longer see him.
Please post again and let me know how you're doing.
Take care,
Emily :wave:
. Thanks for your help again.