Few questions...

[rohrer01]

I sent my disk to a doctor in NC for review and he indeed did send them back to me. If you really want to be "safe" you might consider making several copies of the disk that you have, then you can send them out to several doctors at once and not have to worry whether or not they send them back in a timely fashion, or not at all. Your case is certainly a complicated one. Maybe Dr. Lenke would see you just based on the other conditions that you have.

Unfortunately, I have found this to be a numbers game with many doctors where they look at the degree of the curve and not the surrounding symptoms. I have great pain with my 46* curve. The doctor in NC thought it should be fixed, then cancelled my consultation with him. I don't know why, but maybe I'm better off, I don't know. I'm extremely restricted by who my insurance company will allow me to see, so any second opinions are out-of-pocket for me.

You seem to have more freedom in choosing a doctor. I would definitely use that to your advantage. There are several SRS doctors at Twin Cities Spine Center in Minneapolis, MN. I went there once and they were all affiliated with Abbot Northwestern Hospital. I'm not sure what the hospital's reputation is, but I've heard good things about the doctors. My doctor was Joe Perra. Even though I was in great pain when I saw him, he basically dismissed me because my curve was only 41* at the time. However, in his credit, he did a FULL workup with MRI even though the curve was still considered subsurgical, just to make sure there were no other underlying problems that could be causing the pain. There are several other scoliosis specialists there. You might also consider location to where you live, as you would have to travel post-surgery. New York also has some world renown scoliosis surgeons, as does California. So you might consider going somewhere where you are closest to a top-notch surgeon. Just my opinion.

[TechNerd]

Yea, thankfully with the new healthcare reform, I'm still covered under my parents insurance. It would have been trouble for me if that bill did not pass simply because my CVID treatments range between 2,000 - 4,000 each and I get them ever 2 weeks during the winter months and 3 weeks in the warmer months...

Anyway, that being said, I am covered under my mother and father's insurance; the secondary often picks up a lot, if not all of the remaining medical expenses. I have at least two other surgeries I want to try and get done before I go off of their insurance so I'm trying to get a start on things because I'm sure I'll need time to recover and there are always additional complexities or reasons to postpone.

I have been, and continue to wonder if I should travel or try to stay local. I always seem to have trouble finding doctors that truly understand the added complexities brought on by such large amounts of radiation to an infant (and I say infant because I was literally just beginning to speak), let alone taking into consideration everything else such as CVID, small airway, ect. This is one of the primary reasons I'm trying to find someone with more experience than what most of the local doctors around WV have.

If I could only count the number of times in which I've gone to see a new doctor and I've given them the background and automatically they begin acting like they understand everything. Then they go to do a physical examination, they ask me to open my mouth, and they keep saying "wider" as if I'm not already opening it as far as I can. When I then explain to them that the growth of my jaw was affected by the radiation & chemo, they're in "aww" and can't believe it. I understand it's a special case and I don't expect them to know the full extent of things, but I expect them to ask me questions in return until they fully grasp the situation instead of jumping to conclusions, making assumptions, acting arrogant, and egotistical.

Anyway, this is becoming more of a rant instead of staying on topic. Thanks for the additional suggestions and I'll definitely continue looking into them!

[rohrer01]

It sounds to me like whomever does your surgery, the anesthesiologist in charge will have to be made well aware in advance that he will need pediatric size instrumentation. I don't know whether your CVID or the medications you take for it would influence your response to anesthesia, but that would be something I would definitely find out about and INSIST on meeting the anesthesist well in advance of your surgery to discuss these concerns. You will probably be better off staying on the east coast. Like I said, there are some really great world renown docs in New York. Best Wishes to you in your search! AND it's okay to rant here. I think we all do it! :-)