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ThomasNash
11-07-2010, 06:59 PM
Soooooo here I am a few days away from the big decision. I had my last xrays done over the summer and I had three curves. My largest one was in the center of my torso at about 37 degrees. The one at the base of my neck isn't so bad, but the about 20 degree curve at the base of my back causes serious pain. The muscles are pushed to the left side and you can feel them bulge out. It presses hard on the nerves in my back and the pain is terrible. My spine's also rotated and my hips aren't level so I get pain while running. Physical therapy helped and I do it at home now. I have a heel lift to hopefully balance out my hips. I was treated for pectus carinatum with the brace for 2 years if anyone's familiar with that procedure. It did wonders despite the excruciating pain. Here I am at 16 now, a junior in high school taking all IB/AP classes for some college credits. I have a 4.8 weighted GPA and turn 17 on the 23rd. School comes first for me, haven't been able to play soccer for a while due to a school transfer and now my back. I'm really nervous about the xrays on Tuesday, and dad and I are considering getting the surgery over and done with over X-mas break (I had my wisdom teeth pulled last break, so I'm starting to love the leisure time :p). We're at a crossroads with this because the pain is horrendous and I can't sit down for long periods of time or run without pain. It's either then or over the summer and I'm not sure if I can last until summer. It's just dad and me (divorce) and I need a job over the summer to help pay for things too. A friend of ours just recently died from the surgery due to an infection he contracted while undergoing the surgery so that of course is still stuck in the back of my head. I just want my normal life back and if surgery's what it takes, then so be it. I know it's gonna be hard to get back on my feet (metaphorically and literally) but I can't stand the limitations scoliosis is causing me. I'm an avid skimboarder and that's high-impact on your feet/legs/hips/back and I want to be able to do that again. I'm really stressed about this whole thing and I'm trying to keep my wits together for my dad, girlfriend, and other friends. As Tuesday gets closer and closer, I get more and more stressed and I just want this all to be over with. Any words of advice/encouragement and welcomed and to all of you in any similar situations, you're in my thoughts. Best of luck to everyone out there, stay strong.

~Tom

titaniumed
11-08-2010, 01:30 AM
Thomas

Welcome to the forum

Has your surgeon recommended scoliosis surgery? If so, what levels?

Iím assuming you had a Nuss procedure? If so, did they remove the bar?

Let us know how the x-rays come out.
Ed

Pooka1
11-08-2010, 06:44 AM
Thomas,

First I want to congratulate you on all your accomplishments.

Second, I just wanted to ask if you have been evaluated for Marfans syndrome. The triple curve and the P.C. are consistent with that though of course that doesn't mean you have it.

The main issue for people with Marfans is to make sure that the aorta isn't enlarging so it doesn't dissect.

Once this issue of early death from aortic dissection was identified, the average lifespan of people with Marfans went from about half the normal lifespan to something indistinguishable from the normal lifespan. It is THE MAIN ISSUE.

Best of luck.

Sharon

foofer
11-08-2010, 08:50 AM
Tom,

You sound like a well-rounded, accomplished and thoughtful young man. The sentence that stood out for me was that you were trying to keep your wits together for everyone around you. I think you need to focus on yourself during this interlude, so that later you will be ABLE to follow what sounds like your natural inclination to take care of everyone. If you "lose it" from time to time, the world will probably not fall apart, and you allow others to take care of you.

Let us know what Tuesday brings. Don't be a stranger.

Best wishes to you...

ThomasNash
11-08-2010, 07:49 PM
I had/have pectus carinatum which is the opposite, so my sternum extrudes outward rather than inward.

I've never been diagnosed or been tested for that. The surgeon my dad and I have developed a rapport with is Dr. Hebra who is apparently one of the best, he works at the local hospital. I'll run that by him tomorrow. I am tall, have long limbs/fingers, and have 20/425 vision though. My dad has a negative bone density and has a thinner frame than me so it's a possibility. He doesn't have any heart problems, he can ride 70 mi on his bike easy yet he does have fibromyalgia. I'll still run it by though, thanks for the heads up. There's so many diseases/disorders out there, everyone's bound to have something.

LindaRacine
11-08-2010, 08:09 PM
Hey folks.... just a reminder that the Adolescent and Teen Patient forum is for kids to talk to other kids. If you want to make contact with the patient, please feel free to send him a PM.

Thanks!

--Linda

Pooka1
11-08-2010, 08:10 PM
I had/have pectus carinatum which is the opposite, so my sternum extrudes outward rather than inward.

Both pectus excavatum and pectus carinatum are consistent with Marfans.

Here is how it is diagnosed:

http://www.marfan.org/marfan/4265/2010-Revised-Ghent-Nosology


I've never been diagnosed or been tested for that.

There is no one test. Marfans is diagnosed from a signature constellation of signs and symptoms. That said, all of the signs and symptoms occur on their own so you have to look at the collection and see if you meet the criteria. I had my twin daughters evaluated by four specialists to rule out Marfans:

1. orthopedic surgeon (for skeletal signs beyond the scoliosis),
2. medical geneticist (to do all the body measurements and evaluate the family history... longest medical appointment I have ever experienced... ~3 hours),
3. ophthalmologist (check for lens subluxation... BTW, a majority of Marfans people have the eye signs/symptoms), and
4. cardiologist for regular echocardiograms to check for aortic enlargement.

My daughters do not meet the diagnostic criteria now but they are thought by half of our specialists to have enough signs to warrant the continued echos for life or definitely to 30 y.o. at least. The other two folks don't think they have Marfans. Don't sweat any lack of consensus... it is bound to happen in borderline cases.

There is a genetic test that have no false positive but there is about a 10% false negative. So whatever the result if I had my daughters tested, nothing would change... we would still have to do the echos until at least 30 y.o.


The surgeon my dad and I have developed a rapport with is Dr. Hebra who is apparently one of the best, he works at the local hospital. I'll run that by him tomorrow. I am tall, have long limbs/fingers, and have 20/425 vision though. My dad has a negative bone density and has a thinner frame than me so it's a possibility. He doesn't have any heart problems, he can ride 70 mi on his bike easy yet he does have fibromyalgia. I'll still run it by though, thanks for the heads up.

Good plan. Marfans is rare and you likely don't have it. But the key point is luckily everything with Marfans is fixable. The most important thing is to know if you are heading for an aortic dissection as I mentioned earlier.


There's so many diseases/disorders out there, everyone's bound to have something.

It certainly seems so!

You sound like such a great guy. You can handle this and anything.

Good luck.

jeneemohler
11-08-2010, 09:57 PM
Hi there!

Welcome to the forum! I know we adults are supposed to stay away from the adolescents threads, but I want to welcome you and encourage you to keep digging into this site. There is a lot of information, and so many people, including many teens, who understand you and support you. There are so many positive stories. Remember, you are not alone!!! Hang in there.

Pooka1
11-08-2010, 10:12 PM
Hey folks.... just a reminder that the Adolescent and Teen Patient forum is for kids to talk to other kids. If you want to make contact with the patient, please feel free to send him a PM.

Thanks!

--Linda

We posted at almost the same time.

I didn't realize this was the kids section. I don't look at that section name, just the post name. I'll check from now on.

sharon

ThomasNash
11-09-2010, 06:56 PM
Well, things haven't changed much skelatally, still 15-38-22 curves but we did reach some conclusions. Surgery is NOT an option based on the lack of severity in the curvatures and the cause of my pain, which is the muscle spasms. That's caused by the rotation at the base of my spine and can only be treated with Aleve-like medication (starting today) and physical therapy. So I'll be stuck with the pain for the rest of my life, but hey, things could be worse. I ran the Marfan's scenario by them and they said they'd dig into it and check back with me later, though. One slightly important fact I did learn (that can apply to parents and adolescents alike) is that while I'm almost done growing, the curvatures can still worsen. Typically only noticed in males, the severity of the spinal curves may possibly become worse even after you stop growing. It's important to continue to monitor them even after you noticed a stop in growth (of course I'd be an inch or two taller if my spine was straightened). And if you are/have a child in physical therapy, it's best to keep them in the program as long as possible. Sure you can do it at home by yourself, but you won't get the same driving motivation that an instructor can provide. You can only motivate yourself so far and having someone there to help can make a huge difference.