Last appt for kid #1 and ancillary comments

[Pooka1]

As advertised, my kid who was fused in March 2008 was released by the surgeon. The radiograph showed no change from a year ago which showed no change from earlier radiographs. She is stable and balanced.

She does not have to do any check up radiographs. She does not have to find an adult surgeon to follow on. Both of those in response to my questions.

I asked if she was indeed a Lenke curve type 1A- (pure thoracic) and he took a minute to try to remember and said he thought so but I am not sure he remembered. He told me once that her correction was not straight-forward which I think is a reference to the extreme amount of rotation that he was able to correct but I don't know that. I also asked if kid #2 was a type 1C- (false double) and he said yes.

I asked AGAIN if he is sticking with this being "one-stop shopping for back surgery" for this kid and he AGAIN stated it was.

I take this to mean she is done with scoliosis.

She said it didn't seem like a long time dealing with this and she is right... She was diagnosed in 9/07 and released in 12/10... three years and change from start to finish.

She also said she never thinks about it. She said she doesn't think she has been dealing with it for a long time. I think after a few months when she was feeling mostly normal is when she stopped thinking about it. If so, she only was thinking about it between diagnosis and the time when she was mostly recovered, a period of maybe 3/4 of a year. That would explain why she doesn't think she has been dealing with scoliosis that long. I'm glad she views this as a blip even in her little life.

Maybe the surgeon will release kid #2 at her appt in June 2011. Eyes on that prize.

[jrnyc]

what great news, Sharon...so happy for you and the kids...
some things in childhood, bless the children, are easier to recover from than others, i guess...thank goodness you have raised resilient kids!

jess

[mariaf]

Great news, Sharon!! Sounds like your daughter has an excellent outlook and attitude, which I believe are so important not only in dealing with scoliosis but in life in general :=)

I could not be happier for you guys.

[Pooka1]

Jess and Maria, thanks so much for your kind thoughts. They mean a great deal to me.

My daughters might be off the scoliosis road but they are on the Marfan-watch road for the rest of their life. The scoliosis diagnosis will always have that silver lining of cluing us into having to travel that other road. That's the way I look at it anyway.

Sharon

[jrnyc]

and now we know why your daughters have such positive attitudes...they got it from their mamma!

jess

[titaniumed]

Sharon

That is fantastic news. Their scoliosis is a thing of the past now and with the great results and quick recovery, its almost like when you broke your arm as a kid. Years later, you hardly remember stuff like that.

It is amazing how well the kids recover.... Percoset for a day or two, maybe a headache.....and its off to the races!

Ed

[Pooka1]

Thanks Ed.

Her reaction to this situation is some combination of nature and nurture as is everything. On the nurture side, I was honest with her and passed on most of what I knew. This was another scientific challenge and the surgeons were going to fix this. If it didn't work the first time we would get it fixed on the second go. Surgery saved my life twice and it will now save my daughters. They knew that.

She had the benefit of being in a whirlwind situation with not a lot of time to dither. I will always think she had the easier time compared to her sister whose treatment was much more protracted. It is hard seeing one kid in a brace and not moving forward when the other one is moving on and forgetting about scoliosis.

I think honesty and calm determination to solve the problem was the only way to play it. We are lucky to live in this time although down the road they may crack this nut without needing surgery. I am just grateful now for these surgeons who fix kids.

[JenniferG]

Congrats Sharon, to you and your daughter. Hopefully the same result for #2 next year. This is what we all hope for. And it's still mind-bogglingly amazing that it can be achieved.

[Pooka1]

Thanks Jennifer.

I have to agree that these surgeons are remarkable. They know they are making a difference in the world.

[Elisa]

Good to hear your girls are doing really well. It's tough enough for me to have to deal with one kid with scoliosis but TWO!? BTW, are your twins 'identical'... is that why they both have scoliosis?

[Pooka1]

Good to hear your girls are doing really well. It's tough enough for me to have to deal with one kid with scoliosis but TWO!? BTW, are your twins 'identical'... is that why they both have scoliosis?

Well I would say that once I got through the first kid's surgery and saw the recovery and results, I was considerably off the ledge with the second. My husband and I were of course concerned but I would not say I was as worried as I was with the first kid.

They are identical but identical twins both have AIS only about 3/4 of the time because of epigenetics and such. Also I imagine Lyonization (girls only - different X chromosomes are active in each twin) might bring the concordance down below 100% for identicals.

In my daughters' cases I suspect the reason they both have scoliosis is because they both have the same connective tissue issue going on. We don't know what it is but it's something. But that is not the reason driving why most identicals are both affected by AIS because it is relatively rare.

[Elisa]

Very interesting Pooka.

In my daughters' cases I suspect the reason they both have scoliosis is because they both have the same connective tissue issue going on. We don't know what it is but it's something.

How do you know they both have connective tissue issues going on, are there tests for that and what are the symptoms?

[Pooka1]

Very interesting Pooka.

How do you know they both have connective tissue issues going on, are there tests for that and what are the symptoms?

The symptoms are different for each syndrome. My kids are tall and thin and are very flexible.

A geneticist evaluated them and thought they should be monitored for emergent Marfan Syndrome. The pediatric cardiologist who monitors them agrees they need heart/aortic echos every two years out rule out aortic enlargement.

The orthopedic surgeon and pediatrician both disagree with the geneticist and cardiologist and don't think my daughters have it. So I have two doctors thinking my daughters need to be monitored and two who think it is not necessary.

There are hundreds of connective tissue issues some of which are named. Some that are known to be associated with scoliosis besides Marfan is Charcot-Marie-Tooth, Erlers-Danlos, Loetz-Dietz (sp?) etc. Also some other conditions are associated with scoliosis included certain of the neurofibromatoses I think.

Google "connective tissue disorder" and "scoliosis" to get a better idea.

[ddb]

Sharon - I'm so happy for you guys! I understand what you mean about the prize and hope you get that in June

You were a great help to me as my youngest went through surgery last year. Thank you!

Dee

[laurieg6]

Congratulations Sharon!

That's really great news and I'm very happy for you. It must be such a relief to have at least one of your daughters fully done with scoliosis treatments, or even having to think about scoliosis. I hope you get the same news for your other daughter at her appointment next June!