Need some advice!

[debbei]

I just wanted to add in that I didn't have alot of pain before I had my kids. I had a little pain but it really didn't bother me at all. The pain started to get to me after I delivered them when I had to pick them up all the time. Both of my kids were in the 99% for both weight and height and it was such a challenge for me to get through the days. There were days I would just be in tears my back hurt so bad. During a child's first 2 years of life you have to pick them up all the time...they are so dependent on you. Like I mentioned in my earlier post, in the few years while I was pregnant with both of my kids my curve increased 10 degrees to it's current state of 58 degrees. So that's why I am getting the surgery in 8 weeks, because my kids will be 3 and 5 and I don't need to pick them up anymore. My back has become very deformed during the past few years and I am looking forward to having a more normal back! I feel like it's probably better to do the surgery now than wait 20 years. You recover much faster. I think my doctor, or a previous one that i had, said if you are 30 years old you recover more like a teen.

Jen,
I just want to tell you that you don't 'appear' deformed. It's easy for us to see these deformities in ourselves, but not easy for normal people who have no idea.

You will be fine with your surgery, I just know it. You are doing the right thing.

[JenM]

Ha, ha. Thanks Debbie. But that's because I wear really large shirts to hide my back!!! Ughhh, I'm counting down the weeks already. Scared to death, but I know I'm doing the right thing. The real anxiety will kick in on May 8, with 1 month to go!!

[debbei]

Ha, ha. Thanks Debbie. But that's because I wear really large shirts to hide my back!!! Ughhh, I'm counting down the weeks already. Scared to death, but I know I'm doing the right thing. The real anxiety will kick in on May 8, with 1 month to go!!

No not true, I saw you with my own eyes. Honestly, you see it much more than anyone else. You do not appear hunched over or off balance.

Want to get together again before your surgery?

[JamieAnn]

How is it that people really don't notice our crooked-ness? I have to admit it's a nice thing but it does drive you a little nuts sometimes when you start questioning yourself!

I find dressing room mirrors to be absolutely horrible - it must be the lighting but I always notice my curves moreso than ever there!

Thanks for the additional info Jen. I can see what you mean about your level of pain - that's how I would describe mine. My back is very achy all the time, walking through a mall is torture, theme parks are also torture, and commuting to work every day is not easy either. But I'm wondering if this is because I just need to work out more often and "suck up" the discomfort.

Either way, I can't stand the idea of this getting worse. So I'm already leaning towards the idea of getting this surgery "out of the way" as scary as this all is.

[jrnyc]

Hi Jamie
i dont think your pain is because you need to work out or ignore the pain...pain caused by a curved spine is real pain...not the kind of minor aches people with straight backs and no disc problems describe..the achiness from walking...the tiredness from walking...is from insufficient support from the back....i find it exhausting! i can no longer walk my beloved NYC or stand at a bus stop...the last few years i worked (2 jobs) there i needed cabs to go everywhere! it was just too tiring and exhausting to take public transportation!! my 2nd paycheck ended up paying huge $$ totals for cabs!
if your curve went from 45 to 46 degress in 4 years...maybe the progression is slowing...?

best of luck
jess

[JamieAnn]

Thanks, I'm beginning to understand that more and more, but I can't help but feeling I'm partially responsible.

As for the progression, 4 years ago they measured it at 45, 2 years ago 41, and this year 46. I know there is a degree of error, so I'm looking at it over the last 14 years from 32 - 46. That's 1 degree per year.

I suppose there is no way to prove at this point if it's stopping, but from everything I've heard it will keep getting worse once it's into the 40's.

[Pooka1]

Who is saying that it's rare? Is that from what you have read, or another doctor is saying that?

It is from everything I have read, was told, and heard.

There is no point in wearing a brace in the 30s* if it is likely you will still progress to surgery as a young adult. Or at least I see no reason.

I think if you polled the parents on this site and the patients who were treated as children you would get a near 100% response that the surgeons are saying if they can make it to maturity in the low to mid 30s* they are almost certain to avoid progression requiring fusion in a normal lifespan. Near or actually 100% will say that as far as I can tell.

[Pooka1]

There was a case of a woman whose curve was in the 30s IIRC correctly on another forum and that the surgeon was surprised she progressed to surgery as a young adult. It was on Dr. Hey's blog. That was viewed as a very unusual situation even then and that was last year. I'll try to find it.

[JamieAnn]

do you think it makes a difference that I was 16, and not an adult? Maybe my body was still growing?

[Pooka1]

do you think it makes a difference that I was 16, and not an adult? Maybe my body was still growing?

The master variable except in very oddball cases is 2 years post menarche.

As I understand it, it would be highly unusual for a wrist radiograph to not show maturity 2 years post menarche.

The next best thing, absent some very oddball condition, is chronological age. At 16, I think it is safe to say you were done or close to done growing.

I hope others weigh in on the issue. To a person I expect they will say that 30s* is almost certainly in the clear for life (though the issue of ancillary damage from even a 30* curve in the long run hasn't been studied).

[Pooka1]

Progressive scoliosis despite only a ~30* curve

I forgot the specifics... her lumbar collapsed although she had a thoracic curve. I suspect that is HIGHLY unusual and is irrelevant to what we are discussing.

ETA: I also misremembered the year... I posted it last year but the blog entry is from 2007. The mind... so very fragile...

http://drlloydhey.blogspot.com/2007/...scoliosis.html

Yesterday Jaclyn and I saw a lovely 29 yo woman at Hey Clinic who was diagnosed with a R thoracic scoliosis as a young teenager. The curve was followed with serial X-Rays, and by the time she turned 17 and had stopped growing, her thoracic curve was 30 degrees, and her lumbar compensatory curve was 18 or so degrees. At that time the patient remembers being told that “she did not need to worry” since she was “done growing” and her curve was not that large.

Since then, she did just great until about 2-3 years ago, when she noticed that her “hourglass” figure was beginning to shift, with her R hip becoming more prominent, and her trunk sitting too far over to left, and abdomen becoming slightly more protruberant on that L side. She has had some low back pain, slightly more in past year or two.

She came in to Clinic today with questions about getting pregnant and having children with her scoliosis.

Her X-Ray shown above shows that her thoracic curve was still around 30 degrees, but her lumbar curve was now approximately 39 degrees, with severe disc collapse especially at L23 level.
She was really surprised to see the degree of progression over the past 12 years.

Much more in the blog entry about many things including pregnancy.

[JamieAnn]

Thanks, that's very interesting! That sounds a lot like my situation!

[JenM]

Hi Pooka-

It's so funny you posted that link from Dr. Hey's website. I read his site every week and remember reading that story and it is sooo similar to my situation. When I was around 15 years old, I had a double curve, and my right thoracic curve was in the mid-30's and my lumbar curve was like 19 degrees. Then a few years later, my lumbar curve moved just to like 24 degrees. Well, now at 31 years old, my lumbar curve is 58 degrees and is larger than my thoracic curve (which is now 55 degrees)!! Something happened during my pregnancy (guess the extra weight - gained 50 pounds with each pregnancy) and I noticed my body started to look different. I was shocked when I found out in November that my lumbar was measuring more than my thoracic curve!!! THe doctors didn't recommend surgery to me when I was in my teens. THey didn't think my curve would progress.

[Pooka1]

Thanks, that's very interesting! That sounds a lot like my situation!

Well but your T curve progressed and your lumbar didn't collapse!

There are plenty of interesting blog entries on Dr. Hey's site. He must hold the land speed record for surgeries... it seems he can do a given fusion is much less time than any other surgeon and rarely ever needs to transfuse a patient from the cases I read. He has an interesting personal history and seems driven.

[Pooka1]

Hi Pooka-

It's so funny you posted that link from Dr. Hey's website. I read his site every week and remember reading that story and it is sooo similar to my situation. When I was around 15 years old, I had a double curve, and my right thoracic curve was in the mid-30's and my lumbar curve was like 19 degrees. Then a few years later, my lumbar curve moved just to like 24 degrees. Well, now at 31 years old, my lumbar curve is 58 degrees and is larger than my thoracic curve (which is now 55 degrees)!! Something happened during my pregnancy (guess the extra weight - gained 50 pounds with each pregnancy) and I noticed my body started to look different. I was shocked when I found out in November that my lumbar was measuring more than my thoracic curve!!! THe doctors didn't recommend surgery to me when I was in my teens. THey didn't think my curve would progress.

Wow now that is VERY much like the case Dr. Hey's case. Wow.

So you are yet another person who was mid 30s* at maturity and went into the surgical region as a young adult. This is not the paradigm.

ETA: DOH! I double counted you, JenM. You are the same person upthread. Sorry.