Two questions..

[SeahawksFan1978]

Hello,

I have yet to go to a Dr. yet because of fear. I know I have scoliosis, but I have no idea what the curve is or whatever..last time I had asked my GP about it, who is also an Osteopathic Physician, he said it was minor and he did not think it would be a case that needed surgery..but if that is the case, how do I fix the things that bother me, like my rib hump? Anyway, the point of saying all that is to ask for a recommendation of the best Dr. to contact in the Seattle area that specializes in scoliosis..I'm very nervous about doctors, and obviously very self conscious about this..so a Dr. with excellent skill as well as bedside manner is what I'm seeking.


The second part of the question is about mattresses. I recently got a Novaform memory foam mattress, and it's comfortable, but I just wanted to know what the consensus opinion is on these type of mattresses. Please let me know if you need any further clarification on my question, and I kindly thank the forum for any assistance you can provide!



Thanks,

Ryan

[Snoopy]

Hi Ryan,

I don't want to scare you, but when our GP (who is also an Osteopathic Physician) diagnosised my daughter, he too told us it was minor. We immediately went for x-rays and were told her Scoli was already at 36* which was very close to the 40* that her orthopedic surgeon considers surgery.

I would suggest seeing an orthopedic doctor who specializes in Scoli., get an x-ray and then you'll know where you stand.

Good luck.

Mary Lou

[txmarinemom]

Mary Lou ...

This same converation has been been had ... and I was called hostile for suggesting the same thing you did. Maybe you'll have better luck.

Pam

[Snoopy]

Pam,

Ooops.....my bad!

Mary Lou

[txmarinemom]

Pam,

Ooops.....my bad!

Mary Lou

Laff ... no, no ... not meant that way at all! I meant Ryan has asked these questions before, and when I answered the same, I was seen as being mean.

Ryan, if it was my delivery, I apologize. I am trying to be more conscious of that, and I'll be the first to admit I DO get very passionate about some things.

I hope you'll take Mary Lou's advise and have a specialist measure you. Only when you figure out where you stand can you hope for some relief.

Best to you.

Pam

[debbei]

Ryan,

I agree with the others that GP's and pediatricians have no business giving any advice on scoliosis. I'm 46, and when I asked when I should go back to see an ortho doc for my scoliosis that I've had since I was a teen, the Dr. poo-poo'd my question and said there was no need yet, he'd let me know when. Then this spring, I found out that I had two 66 degree curves. The reason he didn't think I was bad from just looking at me in clothes, was that both my curves were equally balanced.

Also, my kids pediatrician didn't think any of my kids had scoliosis at all, and I found it in all 3 of them.

Bottom line, go see a reputable specialist. Try http://www.srs.org/find/ to find someone in your area.

[Snoopy]

Pam you are not mean. Sometimes others think you are..... but you know I value your thoughts/opinions. If you've already suggested the same thing I did, why is this thread going? In my opinion, it just takes up space needlessly to repeat the same questions over and over and over.....

Mary Lou

[SeahawksFan1978]

Can someone please address the question about the mattress? I am so scared..I think it's a possibility I could have Marfans also.. I'm just really scared about what if I have both..am I looking forward to surgery and heart surgery?

[discombobulated]

Hi Ryan,

I've not read through it much, but you might find this thread here at NSF about the mattresses. Not being able to sleep well from pain/discomfort definitely only makes you feel worse! I hope you can find a mattress that helps you out, whether you have surgery or not.

I would like to back up what Pam & Mary Lou are saying about getting a second opinion. It's not because we think your GP is a bad doctor. It's just that even with some extra training in osteopathy, a GP's knowledge & skills in something so complex as scoliosis still can't compare those of a spinal surgeon, especially one who specialises in scoliosis. These specialists study & train for years JUST about the spine, on top of all their other, more general medical education! It's not universal, of course, but a number of members here have found that their diagnosis from their GP, chiropractor, or other non-scoli specialist just hasn't been correct - and what use is that?! We just want to make sure you're in the best hands possible

I know that scoliosis can be a scary thing, especially when you've just found out about it...but between a good surgeon to consult & us here on the forum to cheer you on & answer what questions we can - you will come through this. I swear we're a friendly bunch - please keep posting & letting us know how you're doing.....but, let's keep the same question to the same thread, hey

Take care, Ryan.

[Snoopy]

Ryan,

I didn't answer the question about the mattress because my daughter sleeps on a regular mattress, so I know nothing about the memory foam mattress.

Mary Lou

[Pooka1]

Deep breaths

Ryan,

Both scoliosis and Marfan's can be effectively managed. These are manageable conditions, not death sentences.

Have you seen this site?

http://www.marfan.org/nmf/index.jsp

My daughters show some skeletal indicators of Marfan's. It is a type of connective tissue disorder. Connective tissue is present throughout the body so many body systems can be affected. Here's what I do:

1. have an orthopedic surgeon manage the scoliosis. One daughter was fused earlier this year and the other is in a brace.

2. have their eyes checked for dislocation of the lens with a slit lamp test at any qualified ophthalmologist.

3. have heart/aorta imaging done by a pediatric cardiologist.

4. have a geneticist give an opinion on whether they have Marfan's. There is a genetic test for Marfan's that will find ~70-90% of the cases. If it's positive, you have it. But because it misses some cases (false negatives), it doesn't change the need for cardiac imaging the rest of your life if they don't find the gene. If a better test comes along, that would change the imaging need (if you don't have the gene).

This is a syndrome, a consortium of indicators, that grade into other non-Marfan's connective tissue disorders (like hypermobility syndrome). You can have several skeletal indicators and still not have Marfan's. If you look at that web site, you will see they pull the trigger on diagnosis when you have a certain number of major and minor skeletal indicators PLUS another involved system, eye eyes or aorta or dura.

Clearly the most dangerous aspect of Marfan's is the enlargement and subsequent dissection of the aorta. Not all people with Marfan's develop this though. He's what I know about this:

1. in some cases, beta blockers can be used to not only avoid surgery but repair the enlarged aorta to a certain extent.

2. surgery under non-emergency conditions (i.e., no present dissection) is very safe and effective. This surgery, both emergency and non-emergency, has single-handedly increased the lifespan of Marfan's patients from about half of average to very close to average.

The key is for people who might have it to get the cardiac imaging on a regular basis. The annoying part is that the cardiac problems can present at any time in life so you can never stop testing absent some dispositive genetic test for Marfan's.

There is no reason not to get these tests. Marfan's and scoliosis are manageable. I believe I'm repeating myself.

[SeahawksFan1978]

Hi Pooka

Thank you for responding. I have been reading a lot about Marfans , and I guess my fear is that I'll be told I can't ever lift weights to try to increase my mass..I am very tall and thin, and yea..that is a real concern..the heart thing.. I just really need to see a Dr. and have these tests done, I'm just so self conscious and scared...I sometimes feel like the biggest freak in the world. I just think..what if I have to have surgery on my spine AND surgery on my heart..it's just very scary to think about..I don't have all the Marfan symptoms...never had any problems with Myopia, no flat feet, but I am double jointed I think...anyway, yea..it just all gets to be too much and thats why I don't call I guess.. Do you know if one can resume lifting weights after either or both of these surgeries, should I have to have them?

I'm a 30 year old caucasian male, by the way.

Thanks,

Ryan

[Pooka1]

Hey Ryan,

If there is a possibility you have Marfan's, you simply must get the cardiac imaging done. It's 20 minutes of sonography. I'm sure you can find a doctor who is familiar with Marfan's. Our pediatric cardiologist not only read the sonography but also did a full physical of my girls, looking at their skeletal indicators. I bet you can find a cardiologist for adults who is equally knowledgeable. It can double your life.

Yes surgery on one's heart and spine is scary. But these particular surgeries are known to be safe and effective. And you really want to have the aorta repair done in a non-emergency situation if at all possible. That is completely within your control at this point almost certainly. I would focus on that.

In re lifting weights, I know that in general, folks with Marfan's need to limit exercise. But I don't know anything specifically w.r.t. particular sports.

You really should get an opinion from a geneticist to see if you are likely to have Marfan's. Maybe you are not likely to have it. They will take an extensive family history and do some measurements of your body proportions and such. In fact you might do this before seeing the cardiologist and see if the geneticist thinks you should get the cardiac imaging.

Good luck, Ryan. First, you may not have Marfan's. Second, even if you are in surgical territory on the scoliosis and(or) the aorta, it could be loads worse. These are manageable.

sharon

[Pooka1]

And by the way...

The Olympic swimmer Michael Phelps is in the same boat as my girls... skeletal indicators of Marfan's but doesn't have involvement with a second organ system. So he gets regular cardiac sonography.

So it seems he might have Marfan's and clearly he works out like crazy. So I'm guessing you can too and you may not even have Marfan's.

And finally, I just read a statistic that folks with Marfan's on average have a better overall body image than the general public. That might be the female contingent skewing the results though... I know you would prefer not to be tall and thin but damn near most women would love to be so. I feel like I'm walking with two models when my two daughters and I are out and about.

sharon

[SeahawksFan1978]

Phelps

Yes, I just read that about Michael Phelps last night.. I love that guy...amazing athelete and I think he's cute too..anyway, I will try to summon the courage to call a Dr. to get these tests taken care of...it would be a real load off my mind if I don't have it, but I guess I'm scared they will say I do.

I know this is a scoliosis forum and I hate to get off about Marfans, but I'm more scared about that than the other...how much do you know about the aortal surgery...you said it's very safe if done in a non emergency situation? Do they have to crack your chest?