Re: Sharon we have so much in common, ie,

[Guest guest]

Hi Sharon:

I read your post I would certainly like to know more about your story. The actual "cause" for my scoliosis was misdiagnosed from birth, as I had a cyst within my spinal cord that simply went undetected because no one, no one ever had the bright idea of simply performing a myelogram which have been around since about the 1950s.Hydromyelia is kind of like hydrocephalus, you know a child that would be born with water on the brain, or a large cranium, very similar. Except my case the fluid made a little hole right down the center of the spinal cord, and over the years kept swelling larger and larger. And the symptoms mimicked a slight case of cerebral palsy, "one hand a little smaller than the other, stiffness in my right leg, spasms etc. so all the doctors kept telling my folks that I had "scoliosis secondary to a slight case of cerebral palsy." Which WAS ALL WRONG! So over the many years from the time I was about seven all of the body casting, seven years of Milwaukee back brace and three scoliosis operations with Harrington rods wound up being ALL FOR NOTHING when finally in 1978 paralysis in my right eye set in and they finally performed a myelogram discovering that I now had hydromyelia cyst with inside my spinal cord that extended almost 3 feet from my tailbone all the way up into my brain stem putting pressure on my cerebellum. The brain scan looked like a long tube going up inside my spinal cord reaching into the base of my skull with a little golf ball size ball at the end of it. I had to emergency brain surgeries to shunt the cyst but by this time the damage had been done, my spine was already fused at a 78° curve. And the neurological damage was not going to return to normal.

But I came back to being able to walk with a walker, and I am really interested in hearing about your doctor even more, since I gather he has done a good job for you, and if you don't mind me asking, what degree was your scoliosis and what type of correction were you able to get? I am now 51 years old and still hoping and trying, and I sure appreciate hearing good success stories and encouragement from everyone.

Thank you all, ie Bush

[Guest guest]

Thank you so much for your reply, I'm glad your doctor was able to help you, THAT IS GREAT! Where is he located? I realize that he is most not likely to deal with cases as complex as mine, but I just like to hear about good surgeons doing good work. I saw Dr. Boachie last year and will be seeing them again in the spring, most likely if there is anyone who can help me it will be him, and when I did see him he did not seem intimidated by the complexity of my case, just rather that it would be complex with multiple surgeries posterior and anterior. Said that I would be in the hospital approximately 1 month and would require Halo traction postop again in my life. So, it least it sounds hopeful, but I would still need the preoperative testing before any final plans are made. Big decision at 51, that's why I asked your age. Sometimes I think to myself when I add up all the years I've spent in hospitals, (maybe not anymore) but then I think how bad it will be if I do not do anything.

Thank you again, ie PS. If you ever want to e-mail me personally my e-mail address is jstfrankie@...

[Guest guest]

Hi, ie.

Yes, you and I did have a similar start to our scoli journeys, except that my curvature was congenital, meaning I was born crooked. Yes, I had the spinal dysraphism affecting the spinal cord, but the main concern was that 2 or 3 of my lower thoracic vertebrae grew wrong. One grew as a wedge-shaped hemivertebra, and a couple of them grew fused to each other on one side. Just like building a tower with crooked blocks, my spine grew screwy right from the start, with an apparent lump at the thoracolumbar junction, which was long mistaken for a myelomeningocele (spina bifida). Ok, I'm not 100% clear on the terminology, and my split spinal cord (diastematomyelia) may be technically a form of spina bifida.

At any rate, I did get a little bony septum that managed to grow right through my spinal cord at T10, splitting the cord in two just like splitting an electrical cord longitudinally. The wires got separated, but everything still works! So I had two little cords, each with a little dural sheath, between T10 and L2 or 3. And Dr. Woodard was able to remove that piece of bone, cut open the dural sheaths, reunite the cord halves, and join the sheaths into one dura around a single cord! I did have some cerebral spinal fluid leaks, which Dr. Woodard repaired during my second operation. Then again in operation 3, one leak needed to be re-patched. I wasn't too happy when I learned my 2 operations would end up being 3, but I needed that third operation to get all the fluid leaks contained even if there hadn't been more revision work to do!

So anyway, ie, in answer to your question, I wore casts or braces for most of my childhood until age 13 when my curvature had progressed to about 74 degrees. They stretched me via Risser and Harrington, to about 50 degrees, which subsequently settled to about 60 degrees. As far as I know this is still the approximate measure of my thoracic curve. But I have a well-balanced S curve so I'm not tilted very much. I think I ended up with my right shoulder a tad higher after the revision, but it's become less noticeable in just the first few weeks, so no big deal. The big deal is that I'm no longer tilted forward, and I now have a nice little lumbar lordosis and, yes, I'll say it, I now have a butt, LOL. Even if the only real benefits were in the future I could be somewhat happy about the cosmetic enhancement. But I'm also finding it easier to walk, only 10 weeks post-op. So I guess I would have done it, even had I known that I faced 3 surgeries, and the spinal fluid leaks, the headaches, nausea, and initially inadequately controlled pain, followed by swelling in the feet that is still not completely gone. It hasn't been easy, but many have had it worse. I had care that was for the most part top-notch, from the surgeons, to the support physicians, to the nurses, therapists, and aides. Oh, there was one creepy male aide who made a pass at me right in front of my sister (!), and some of the therapists were less than understanding of my limitations, but most of the people were downright loving, and clearly wanted nothing more than my comfort and healing. Add to this the constant attention of my mother-in-law and my sister, the daily visits of my husband, and the big net of prayer and caring woven by all my family and friends, and I just had to come out well!

Yesterday my husband asked Dr. Rand to rate the difficulty of my surgery, and he gave it an 8 out of 10, but just because of the aspects that involved bringing Dr. Woodard into the picture. I have a feeling yours would be higher on that scale. I don't even know if Dr. Rand would consider taking your case. There's only one way to find out.

Sharon

Re: [ ] Sharon we have so much in common, ie,

Hi Sharon:

I read your post I would certainly like to know more about your story. The actual "cause" for my scoliosis was misdiagnosed from birth, as I had a cyst within my spinal cord that simply went undetected because no one, no one ever had the bright idea of simply performing a myelogram which have been around since about the 1950s.Hydromyelia is kind of like hydrocephalus, you know a child that would be born with water on the brain, or a large cranium, very similar. Except my case the fluid made a little hole right down the center of the spinal cord, and over the years kept swelling larger and larger. And the symptoms mimicked a slight case of cerebral palsy, "one hand a little smaller than the other, stiffness in my right leg, spasms etc. so all the doctors kept telling my folks that I had "scoliosis secondary to a slight case of cerebral palsy." Which WAS ALL WRONG! So over the many years from the time I was about seven all of the body casting, seven years of Milwaukee back brace and three scoliosis operations with Harrington rods wound up being ALL FOR NOTHING when finally in 1978 paralysis in my right eye set in and they finally performed a myelogram discovering that I now had hydromyelia cyst with inside my spinal cord that extended almost 3 feet from my tailbone all the way up into my brain stem putting pressure on my cerebellum. The brain scan looked like a long tube going up inside my spinal cord reaching into the base of my skull with a little golf ball size ball at the end of it. I had to emergency brain surgeries to shunt the cyst but by this time the damage had been done, my spine was already fused at a 78° curve. And the neurological damage was not going to return to normal.

But I came back to being able to walk with a walker, and I am really interested in hearing about your doctor even more, since I gather he has done a good job for you, and if you don't mind me asking, what degree was your scoliosis and what type of correction were you able to get? I am now 51 years old and still hoping and trying, and I sure appreciate hearing good success stories and encouragement from everyone.

Thank you all, ie Bush

[Guest guest]

ie, Dr. Rand is located in Boston. (Yes, he's a , so I'm sure you like him already.) :^) At one time I was apprehensive about contacting him, because I knew my congenital issues would probably make my case unusually complicated. However, it turned out that he was well acquainted with congenital scoliosis, with the bonus being that he has a close working relationship with an outstanding spinal neurosurgeon, Dr. Woodard. They both operate at New England Baptist Hospital, which prides itself on being the region's #1 orthopedic hospital.

I didn't want to build him up too much only to have you disappointed. For all I know he would be willing to take your case, but I can't say for sure. I guess fixing someone else's surgical gaffs is more daunting than just dealing with bad natural defects, but if I were you I would at least ask Dr. Rand to have a look at your films. (Of course I mean AFTER you get your CT myelogram done for Dr. Boachie.)

Yes, you're a little older than I am, and surely have a much more traumatic surgical history than I have. But as you pointed out, your future without an attempt at repairing your current deformity looks pretty bleak. I hope you will at least obtain all necessary tests and let Dr. Boachie tell you whether or not he thinks he can improve that future for you.

You too are welcome to email me if you wish. sharon.green18@...

Actually, you can send email to most members, by clicking the email buttons beside their names on posts or emails.

Wishing you the best,

Sharon

Re: [ ] Sharon we have so much in common, ie,

Thank you so much for your reply, I'm glad your doctor was able to help you, THAT IS GREAT! Where is he located? I realize that he is most not likely to deal with cases as complex as mine, but I just like to hear about good surgeons doing good work. I saw Dr. Boachie last year and will be seeing them again in the spring, most likely if there is anyone who can help me it will be him, and when I did see him he did not seem intimidated by the complexity of my case, just rather that it would be complex with multiple surgeries posterior and anterior. Said that I would be in the hospital approximately 1 month and would require Halo traction postop again in my life. So, it least it sounds hopeful, but I would still need the preoperative testing before any final plans are made. Big decision at 51, that's why I asked your age. Sometimes I think to myself when I add up all the years I've spent in hospitals, (maybe not anymore) but then I think how bad it will be if I do not do anything.

Thank you again, ie PS. If you ever want to e-mail me personally my e-mail address is jstfrankieaol