PDA

View Full Version : Few questions...



TechNerd
10-25-2011, 10:23 PM
Hey, I'm a 22yr male college student and have a 57 degree curve in my mid-back. I don't know remember it's exact location or the terminology used as it's been a while since I last saw my doctor for that matter. Although my scoliosis hasn't gotten any worse in the past year and a half (when I first went to a doctor about it), it continues to cause me pain while driving, sleeping, or carrying things (such as my backpack) that uses or presses against those muscles around the curvature. Not to mention the insecurities one feels while at the pool (or anywhere the shirt may be off) by the curve and bump.

Anyway, I have a very extensive medical history starting from the time I was 18 months old. I had cancer which resulted in having chemotherapy and 6000 rads of radiation to the neck and jaw area. As a result, I have 95% hearing loss in my left ear, I have a few paralyzed muscles on the left side of my neck and back causing loss in my necks range of motion and a "floating" left scapula. Additionally, I have a paralyzed vocal chord, the roots to my adult teeth were zapped (and the teeth were removed when I was 14), reduced lung functions, small jaw and throat as the radiation halted and/or slowed growth (I've had doctors actually say that they are surprised I can speak as well as I do), and a restricted airway from having my airways nicked so many times during intubations. Finally, to top everything off, I've been diagnosed with Common Variable Immunodeficiency (CVID) which means an increased risk of infections.

With all of that being said and done, you can probably understand why I'm skeptical do drink after someone else from the same glass (CVID) and why I tend question the necessity of a single x-ray (due to the added radiation) let alone agreeing to have some sort of surgery performed. Since my airway is small to begin with and webbing from all of the previous intubations, I'm also worried about being nicked anymore as it's already difficult to breath and one vocal chord is already paralyzed which allows for aspiration (allows foods or drinks to get into the lungs).

So, my question to you all is:
Where and who (in the U.S.) would you recommend that I look into and/or meet with about getting surgery to correct my scoliosis, taking note of course of all that I mentioned above and knowing that my airway is probably the size of or smaller than a childs (seeing as I'm only 5'2" and about 100lbs to begin with). I need someone who is confident in their ability and good enough to take into consideration these special cases and to take extra caution and/or preventative measures to ensure that the operation goes smoothly.

Also, generalized question here... How long does it normally take from the time you decide to have surgery to the date of the actual procedure? I'm hoping to get this done fairly soon but if that means going with someone less qualified, I don't think it's worth the risk.

Sorry for the long post but I feel that it's all quite relevant to finding the right surgeon.
Thanks!

mabeckoff
10-25-2011, 10:36 PM
Welcome to the forum

Where do you live and are you willing to travel?

TechNerd
10-25-2011, 10:37 PM
I live in West Virginia but basically my search radius is anywhere within the continental U.S. :)

LindaRacine
10-25-2011, 11:42 PM
Hi...

The spine surgeon won't be the person intubating you. As long as you have your surgery in a large hospital associated with a good university, you'll probably be in good hands. You might want to check out Khaled Kebaish:

http://www.hopkinsortho.org/khaled_m_kebaish_md_msc.html

I think the average wait for surgery is about 3 months, but there's a huge range.

Regards,
Linda

djkinkead
10-27-2011, 07:03 PM
Hi TechNerd,

We live in near eastern panhandle part of West Virginia.

I did first inquire about Dr. Khaled Kebaish's per Linda's suggestion (she suggested three surgeons, but heard good things about Dr. Kebaish). When I called his assistant told me he didn't do second opinions, but when she learned I had a double curve, she seemed nicer. She did state there was a two month waiting period to go see him. Although I thought he might be the best surgeon in the area, I didn't really hear good things about patient treatment at Johns Hopkins. Surgery is really a two part process: the surgery and the aftercare.

I choose to go with Dr. Charles Edwards II at Mercy Hospital in Baltimore. Dr. Edwards also was recommended by members of the forum. Mercy has a dedicated Spinal Surgery wing. I had a private room with a couch where my husband could snooze and they also have wifi...so that kept him happy as he is a tech nerd himself.

Hope this info helps!

Karen Ocker
10-28-2011, 04:21 PM
I sent you a PM re-anesthesia and infection issues.

Lue
10-28-2011, 04:37 PM
Hi Tech, I had revision surgery by Dr. K. Kebaish, May and June, he did a great job, and Helene could not be better, I never had to wait long for appt. I went 3 or 4 times to just talk. She told me to call her as many times as I had to,and I did. He is very nice, and so was the Hospital, I got very good care at Johns Hopkins, (not the food), and I know 2 other girls that say the same thing.good luck, you wont make a mistake going with him.

TechNerd
11-08-2011, 10:14 PM
Gah, thanks for the comments and PM's everyone! I got soo caught up in school, I'm just not getting back around to this.

Anyway, I have been doing some more research and was really interested in seeing Dr. Lenke as he seems experienced, well known, and receives nothing but praise. However, I was reading Doreen's post/blog and noticed she mentioned that he only sees patients with a 70 degree curve or greater... Do you think he'd be willing to make an exception for my case, with the increased risk of infection, the exposure to 6000 rads of radiation at such a young age, and everything else?

When I had to get my teeth removed and implants put in, I went to Dr. Robert E. Marx which is known for his work with the Hyperbaric Oxygen Champer and Marx Protocol. I feel like De. Lenke is in a similar position when it comes to his expertise and success in dealing with scoliosis.

titaniumed
11-08-2011, 11:54 PM
Hi Tech!

Welcome to the forum.

If you have digital x-rays, or any other dated digital diagnostic data, thatís a first step to making a search easier since you can call and e-mail. If you have this and all your info in a short dated write-up, itís the best way to get an answer or some sort of direction to someone who can help.

If you have x-ray films, take a pic with a digital camera.

In todays world, if you do any diagnostics, x-rays, mri, ctís get your own copy burned to disc. They are your property. I have had films lost years ago, thatís why I say this.

Best of luck
Ed

rohrer01
11-09-2011, 12:24 AM
I know this doesn't answer your question about which doctor to choose, but when I was in college I had a rolling backpack. It was a real life-saver. It's kind of a no-brainer, but might make your life a little easier until you get your surgery. You might try checking out the SRS website and searching for doctors that way. Then you can find out what hospitals they are affiliated with and go from there. Best wishes!

TechNerd
11-09-2011, 08:33 AM
@titaniumed: Thanks. How recent should the x-rays be? The last ones were taken about 6 months ago, though not much (if any) change had occurred since the ones taken before them. Do they all basically do the X-Rays the same or would some doctors want to do it themselves for some reason? I can get a new set done but I don't want to get them done only to then be asked to do it again in a different manner or at a different location. Limiting my exposure to radiation is a priority, even if it seems like such an insignificant amount.

@rohrer01: I've thought about that on several occasions but I'm extremely self conscious and have a low self esteem, the last thing I want to do is to do is draw more attention to myself with the use of a rolling backpack, not to mention the additional struggle it would impose upon me when trying to go up a flight of steps. With my restricted airway and reduced lung functions, it's hard enough without have to carry a suit-case shaped box up the steps. Because of everything I've been through up-to this point, I have an high level of pain tolerance. So high in fact that I refuse to take pain relievers unless I absolutely have to because when they wear off, the every-moment pain that I am a custom to seems unbearable for nearly a week afterwards. I appreciate the input but I'd honestly rather suffer the pain and attempt to build up strength and endurance through actually carrying the backpack.

rohrer01
11-09-2011, 08:53 AM
@titaniumed: Thanks. How recent should the x-rays be? The last ones were taken about 6 months ago, though not much (if any) change had occurred since the ones taken before them. Do they all basically do the X-Rays the same or would some doctors want to do it themselves for some reason? I can get a new set done but I don't want to get them done only to then be asked to do it again in a different manner or at a different location. Limiting my exposure to radiation is a priority, even if it seems like such an insignificant amount.

@rohrer01: I've thought about that on several occasions but I'm extremely self conscious and have a low self esteem, the last thing I want to do is to do is draw more attention to myself with the use of a rolling backpack, not to mention the additional struggle it would impose upon me when trying to go up a flight of steps. With my restricted airway and reduced lung functions, it's hard enough without have to carry a suit-case shaped box up the steps. Because of everything I've been through up-to this point, I have an high level of pain tolerance. So high in fact that I refuse to take pain relievers unless I absolutely have to because when they wear off, the every-moment pain that I am a custom to seems unbearable for nearly a week afterwards. I appreciate the input but I'd honestly rather suffer the pain and attempt to build up strength and endurance through actually carrying the backpack.

Tech, as far as the x-rays are concerned. I do keep mine on disk, too. However, if I'm seeing a specialist, I will bring my disk but I won't get more x-rays. I let the specialist order what he wants. It cuts down on the exposure and he gets the picture that HE wants.

As for the backpack thing. I saw plenty of University students with them that didn't seem disabled. I always used the elevators when I had it with me AND I sat in the front row so I didn't have to maneuver the stupid thing to the back of the class. In large auditoriums I just carried it down the steps OR took the elevator down and entered through the side, as I dn't like sitting in the back anyway especially in an auditorium. I can appreciate not wanting to draw attention to yourself and building up endurance, though. I never noticed anyone staring at me because, like I said, many of the students were using them, especially the smaller people that had a lot of books. Another option is to get a locker and take only the books you need for that class. I did this at times, as well. But whatever your personal preference, that's fine. I just know it saved me a lot of pain, as I was already on oxycontin at the time. Best to you, and hope you find an excellent team that can help you safely. :-)

TechNerd
11-09-2011, 09:03 AM
I will bring my disk but I won't get more x-rays. I let the specialist order what he wants. It cuts down on the exposure and he gets the picture that HE wants.

I'm not sure what you mean by the above quotation, it seems rather contradicting. Perhaps I'm reading it wrong, could you please elaborate on how you let him order what he wants but yet refused to get more x-rays? Are you saying that you basically already had anything that they may have asked for on your disk, or?...

I always use the elevators in buildings too, assuming I'm not in a hurry. However, the campus is on a hillside and while you can follow the roads to get everywhere - it takes twice as long to get around because there are no accessibility ramps at every staircase on campus. In the winter, I try to limit my exposure to harsh cold weather as I tend to get sick very easily (keeping in mind my CVID diagnosis). As for the quantity of people using the wheel-based backpacks, I've been here for about 3 years now and I've only seen 2 of them. One was a girl with an apparent walking disability and the other was a professor with the wheeled backpack as well as a bag on one shoulder and a computer/laptop briefcase in her hand. She certainly had a lot to carry. lol

Thanks again for your input. :)

rohrer01
11-09-2011, 02:42 PM
What I mean is I keep any and all records of previous x-rays and MRI's on disk. I also have MRI films and x-ray films. I had a bad experience where I needed my old x-rays for comparison and they had been destroyed. The hospital only kept them for seven years. When I see a new specialist I do NOT have x-rays taken right before I go because likely he will want his own. I bring copies of the older ones so that they can use them as a comparison as to whether or not I have progressed. I hope that clarifies things.

Wow, I'm surprised there aren't more rolly packs around. I understand your sef-consciousness. It's all personal decision. I did find it helpful for getting around campus, though. The drawback was when I actually had to put the stupid thing on to maneuver stairs. They are a little heavier because of the metal frame, although not that much heavier. I don't know how that would feel on your back either.

TechNerd
11-09-2011, 03:14 PM
Ahh, right. Ok, I see what you mean now... The thing is, I don't know which doctor I wish to see and I think getting a first opinion from them via email or something would be helpful in my choosing; with such in mind, should I not send them a copy of the most recent scans available?

I just don't want to end up driving (or flying) all over the states (although that would be rather fun) to only be disappointed, one after another, with the doctors opinion(s) or their egotistical attitude (as this can lead to false confidence in ones own ability). lol

rohrer01
11-09-2011, 05:13 PM
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
11-09-2011, 05:35 PM
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
11-10-2011, 12:24 AM
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! :-)