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Spinal Cord Disorders Message Board


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Hi Debbie,

I decided to write this, not only because you asked, but because I thought it might help some people.

Those of you who know me know that I went through HELL with my surgeon. For those who don't, here's a shortened version of the story. (It still might be pretty long, but here goes!)

In September, I had cervical spinal surgery. I had to wear a Miami JTO, which is more than just a rigid collar--it has a lower part, too. I was told that I had to wear it 24/7, with absolutely NO breaks at all
--not even for showering!!! I was further told that I would be wearing it until that CT scan--not an X-ray--showed fusion. Needless to say, I was miserable.

Well, I had my first post-op CT scan on Nov. 19 and saw the surgeon on Nov. 22. It was now about 9 weeks post-op. She told me the CT scan looked great and was showing fusion! I was thrilled, waiting for her to tell me to take off the lower portion of the contraption. But no--she started talking into her dictaphone, telling it that the CT scan showed nice fusion, but she knew that "physiologically this was not possible", so I would be staying in the entire JTO for another six weeks! Then, if the next CT scan confirmed the findings of the first, she would CONSIDER removing the lower portion and leave me in the rigid collar for still another six weeks!! So now she was talking about a total of 15 weeks in the whole thing and 21 weeks in the collar, after which I would (maybe) graduate to a soft collar! All this--24 hours a day, 7 days a week!!!

Needless to say, I was beside myself. When I questioned her about this and mentioned all the people that I had met here on HB, her answer to me was, "Well, you haven't met any of MY patients. Do what you want, but don't come back to me to fix you up." You can imagine the state I was in when I left her office.

The following Monday, I had an appointment with my neurologist for my regular 3-month MS follow-up. When he saw my agitated state, he asked me what was wrong, so I told him. He said he didn't understand why the surgeon was being so strict and suggested that I get a second opinion. So I did. The doctor I saw was a full professor of neurosurgery at NYU Medical College and the chief of neurosurgery at NYU Medical Center--not what you'd call a quack! He took one look at the CT scan and said, "You're fused!" Then, he called the lab where I'd had the CT scan done and spoke directly to the neuroradiologist who had read the scan. The fusion was confirmed. So--guess what? I took the contraption off!! (I'd worn it for just under 10 weeks.)

My neck was very, very stiff, and it hurt to turn it from side to side, but this was normal. I wore the rigid collar (only) in the car on the way home, and when I got home, I put on a soft collar. I wore the soft collar during the day for the rest of that day, but starting the next day, I only wore it when I was in a car or sleeping. By the way, I also got a copy of the written report on the CT scan. Not only did it say fusion--it said SOLID fusion!!!

In late December, I went for another CT scan. The technician couldn't understand why I was there. He had read the first report and seen the fusion, so why was I there again? I told him what I had done, and by the time I left, he shook my hand, congratulated me for having the guts to go against the great Dr. E (I might have been the first), and said he had really learned a lot from me!

Then, on Jan. 3, I saw the surgeon again. At first, she didn't say anything to me about my having removed the contraption. She just gave me the examination and told me that everything looked good. Then, she finally mentioned the collar and asked me how long ago I had removed it. Of course, at this point, she couldn't very well tell me to put it back on!!! So she started talking into that stupid dictaphone again. Said that I had definitely gone against her medical advice, but nothing bad had happened YET!
(Oh-she did take the opportunity to send me for my first flexion X-rays. She was probably disappointed that they were good, too.)

I saw the surgeon again on Feb.14. She checked the flexion X-rays I had had just before seeing her and said they were good. Tested my arm and saw major improvement. Asked me about any problems, and I told her there were none. And then she DISCHARGED me!!!! This was the day that I first would have been coming out of the neck brace after 21 weeks! I'm sure that my neck would have been completely useless after so long, and only God knows how long I would have had to continue suffering with a soft collar. And how long would the recuperation be after that? As it stands, I know that I have cut at least 4 months off my recuperation time! And to make it even better, I NEVER have to see that surgeon again!!!

My point is this. We all have to do what is right for ourselves. While it is true that our doctors are experts, if something doesn't seem right, don't just take your doctor's word as gospel. Do research, study, speak to people who have "been there". Then, make your own informed decision. I didn't just blatantly disregard my surgeon's orders; I was VERY careful. I did a LOT of research. And you guys here helped me tremendously--with the stories of your experiences, your answers to my survey and my other questions, your advice, your support, and most of all, your love.

I hope that some of my old friends are still around to read this and accept my sincerest thanks, and I hope that I have been able to help all of you in some way. My love goes out to all--both old friends and new ones.

[img]http://www.healthboards.com/ubb/heart.gif[/img]
Barb

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Anterior Cervical Corpectomy/Diskectomy); own bone from left iliac crest; titanium plate with 4 screws. Freed myself of Evil Miami JTO (not just J) killer contraption against surgeon's orders (and happy I did it!!!!)
Rebellion worked--I'm free with the surgeon's blessing now! YIPPEE!!
Thanks Debbie and Maria,

I appreciate the kind words. I do hope I can be a source of encouragement for others!!

Maria, do you mean the range of motion in my neck? I'll assume you do. To be honest, I really can't remember how my neck was before surgery. I do know that I have pretty bad arthritis in my neck. (I have several disc herniations and some calcification.) I didn't know about these problems until I had the tests done before surgery, but I did suffer from frequent stiff necks. Now, I can turn my head all the way to either side, but not behind my shoulder. When I go as far as I can, I feel tightness--not really pain. I don't know if I went further before or not, and if I did, I don't know whether it's the arthritis, the surgery, or a combination of both preventing me from doing so now. Overall, though, my neck feels better than it did before surgery--knock wood, I haven't had any stiff necks since then!!

Give it time, Maria. My neck didn't move too well for quite a while. The improvement is so gradual that it is hardly noticeable. Then one day, you will suddenly realize that you really turned your head!!!

Hope I've helped.

[img]http://www.healthboards.com/ubb/heart.gif[/img]
Barb

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Anterior Cervical Corpectomy/Diskectomy); own bone from left iliac crest; titanium plate with 4 screws. Freed myself of Evil Miami JTO (not just J) killer contraption against surgeon's orders (and happy I did it!!!!)
Rebellion worked--I'm free with the surgeon's blessing now! YIPPEE!!





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