Update on daughter

[pmsmom]

Hi,

I originally posted in the Physician/Hospital feedback section looking for recommendations for my dd who was diagnosed with a 54 degree left thoracic curve in September.

We were not going to go with the first surgeon we saw as he was saying a 1-2 day hospital stay, by 3 weeks she'd be back to normal. This was NOT what I was reading on the boards.

So, this past week we saw 2 other docs--one in Baltimore on Monday, and one in DC on Friday.

Dr. Lauerman was the one we saw on Friday at Georgetown Hospital in Washington, DC.

We are sold.

Dd trusts him and so do I--something in his mannerisms (maybe not so puffed up as the others we met) and thoroughness. He also seemed to be interested in hearing what we had to say and dealing with us as an individual case.

He was *very* thorough--even asking about my pregnancy with dd. She was high risk. I had been on several medications to hold the pregnancy--and years ago it was an experimental treatment as I have an autoimmune disorder which caused miscarriages.

Also, he took my concerns about her medication allergies seriously.

However, there may be a complication. He saw a spot on the MRI that he is
concerned about. He said he will have a neurosurgeon look at it--she may
have chiari malformation--he was looking at how atypical her curve was.

I'd rather him be overly cautious (which he admitted he is).

So he is going to check this out with a neurosurgeon colleague of his. He
said he would let us know if we needed to be concerned about that.

That, of course, would change the whole ball game--having to take care of
that before scoliosis surgery.

Right now we are scheduled to see him again in Feb. He will continue to
monitor dd's progress--if her curve hasn't really moved, he may wait and
observe her again in the fall. If it does move, she will have to have the
surgery--possibly next summer.

I am very thankful for this forum. I'm glad to know that there is such
support out there. I hate to think what would've happened if we didn't have
internet and we would've gone with the first surgeon's recommendation.

Am anxious to learn more--anyone who has had or had a child with chiari
malformation--what that entails. I'm probably jumping the gun, but would like to learn as much as I can.

[Pooka1]

There are a few parents here whose children had a Chiari. I hope they respond.

The one-two days in the hospital sounds strange but I have heard three for I think two kids with posterior fusion.

In re the three weeks until "back to normal," that sounds wrong. Might he have said "back to school" in three weeks? Plenty of scoli sites state that including SRS and Scottish Rite in addition to the written material from our surgeon at UNC-Chapel Hill. And there is a video of a posterior spinal fusion on the web done somewhere in the midwest wherein one of those surgeons can clearly be heard saying that kids are back in school by one week IIRC. But he may mean for at least one class as opposed to full time.

Just giving some perspective.

I also wanted to add that I have mistakenly thought various doctors said various things only to be edified on the next visit. These visits can be vertiginous and it's hard to always hear things correctly despite our best efforts. For example, I wrote up a quick report from my daughters' visit to the geneticist and posted it here. When I got the written report, I see that I got a few things wrong based on what the report contained, some very important. An important thing I got wrong is that only one of my twins was diagnosed with a certain syndrome and not the other. I thought they both were. Now maybe the doctor misspoke or maybe I misheard. I tend towards the latter.

Good luck.

[txmarinemom]

pmsmom ... ACM I or II? Did- he actually SEE a syrinx?

Feel free to write me privately and I can point you to a very good hydrocephalus listserve that can help you understand ACM.

Pam

[pmsmom]

There are a few parents here whose children had a Chiari. I hope they respond.

The one-two days in the hospital sounds strange but I have heard three for I think two kids with posterior fusion.

In re the three weeks until "back to normal," that sounds wrong. Might he have said "back to school" in three weeks? Plenty of scoli sites state that including SRS and Scottish Rite in addition to the written material from our surgeon at UNC-Chapel Hill. And there is a video of a posterior spinal fusion on the web done somewhere in the midwest wherein one of those surgeons can clearly be heard saying that kids are back in school by one week IIRC. But he may mean for at least one class as opposed to full time.

Just giving some perspective.

I also wanted to add that I have mistakenly thought various doctors said various things only to be edified on the next visit. These visits can be vertiginous and it's hard to always hear things correctly despite our best efforts. For example, I wrote up a quick report from my daughters' visit to the geneticist and posted it here. When I got the written report, I see that I got a few things wrong based on what the report contained, some very important. An important thing I got wrong is that only one of my twins was diagnosed with a certain syndrome and not the other. I thought they both were. Now maybe the doctor misspoke or maybe I misheard. I tend towards the latter.

Good luck.

Thanks for your perspective. I hadn't thought about what you said, but overall after having interviewed the 3 doctors, this one was a definite out.
I also knew which hospital (local) he planned to do the surgery from, and that one was a definite out as well. We followed through as he had the MRI results and we wanted those. We also knew that we'd get more than one opinion if surgery was required. I also have my dh come along on these visits as I figure more than one pair of ears is good to have.

I got the feeling from this doc that we might only have 1 visit with him before surgery. He wanted us to contact the office one month before we wanted surgery and do pre-op stuff.

Perhaps he is a good doc, but he's not a scoliosis specialist. We were hoping to find one who is.

I do appreciate your input. Thank you.

[pmsmom]

I sent you a PM--thanks!

[pmsmom]

More of an update on the update.

Dr. L's office called today and he said that his neurosurgeon colleague saw no indication of a chiari on dd's MRI.

Special thanks to Pam who has given me links and information about chiari.

Thanks to all for your support and guidance as we make our way through this maze!

[txmarinemom]

... Dr. L's office called today and he said that his neurosurgeon colleague saw no indication of a chiari on dd's MRI. ...

pmsmom,

That is the best news possible ... I am SO glad it's just plain ol' scoli! Most would find that an odd thing to say, but everything's relative, right?

Best wishes with the next steps of your journey.

Regards,
Pam

[pmsmom]

pmsmom,

That is the best news possible ... I am SO glad it's just plain ol' scoli! Most would find that an odd thing to say, but everything's relative, right?

Best wishes with the next steps of your journey.

Regards,
Pam

You're right, Pam. I'm learning that everything is relative. We are breathing a bit better around here--at least I am. Dd and Dh are laid back.

Dd is scheduled for some medication allergy testing at the end of the week--Dr. L said he could use the cephalexin in her IV after surgery. So, we're rechecking that. I'm also having her checked for a nickel allergy as Dr. L said he uses stainless steel. Not sure why. One mom I talked to who had talked to Dr. L said he would use titanium as this mom's dd had allergy to nickel.

Thanks again to all! This group is wonderful and so patient with newbies like me.