- Barb, My only advice is not to make any haste decisions when I found out about Troilynn s TC I was a complete mess and since there isn t a lot of infomationMessage 1 of 23 , Dec 29, 2003View SourceBarb,
My only advice is not to make any haste decisions when I found out about
Troilynn's TC I was a complete mess and since there isn't a lot of
infomation out there I now know I would have done things differently. My
daughter who is four now had her surgery 10/12/2002 and we are still dealing
with the reporcussions of it. I would love to be of any help or even just a
shoulder to lean on. My prayers are with you and your family.
>From: "Barb Southwick" <bsouth@...>_________________________________________________________________
>Subject: Re: [scoliosis-in-children] barb?
>Date: Mon, 29 Dec 2003 19:20:14 -0500
>Thanks. We're actually going to CHOP (CHildren's Hospital of Philadelphia)
>they have a clinic that specializes in my 22q11.2 deletion syndrome. We
>will be there in April, my daughter is having palate surgery. I have
>already spoken to the Ortho, we will be seeing him before the surgery. Not
>only do they specialize in her syndrome, but they have two of the best
>orthos in the country who specialize in spinal issues, also. It's just
>agonizing to wait.
>It always amazes me that one doctor can look at an xray and not see an
>anomaly than another can see one. There bones aren't they? Pretty
>concrete I would think. My daughter cervical spine anomalies (common in
>this syndrome) that no one could see on xray or CT down here. Once the
>xrays and CT were sent to Philadelphia the doctor saw the fusion, without a
>doubt. I guess experience is what is needed in issues like these. I
>believe we will be in the best hands possible at CHOP.
>How did you find out your daughter had tethered cord? Did she have any
>neurological signs? I am sorry to hear that the progression did not stop
>after the release. Does she have any other anomalies of the spine? How
>old is she? Thanks again for all the info.
> ----- Original Message -----
> From: anekkah
> To: firstname.lastname@example.org
> Sent: Monday, December 29, 2003 6:50 PM
> Subject: [scoliosis-in-children] barb?
> Has your daughter had an MRI to find out if she indeed did have
> tethering of the cord and syrinx? If this is even a slight indication
> it's something that should be addressed by a neurosurgeon. My
> daughter had her TC released in 2000 in hopes that is would release
> the pressure on the spine which they believed to cause the scoliosis.
> But since that time it's only gotten worse despite bracing etc. I
> don't kno the exact degree because the doctors here say it's gotten
> no worse even though you can visible see a huge change in her spine.
> Thank you for clarifying the syndrome your child has, for I have
> never heard of it before either. But it's always good to know about
> these things. This board has been a little more busy from the time I
> joined in last year in hopes of finding out about all surgical
> treatments besides traditional Harrington rods or fushion which is
> out of the question for me. I've learned a great deal about the spine
> since last year, and my daughters progression with the scoliosis.
> I've had a bit of help also (thanks to Carmell if she belongs to this
> board also = ) So maybe we can share our insights on what we learn
> and help one another out. Good or bad experiences with physicians
> because they all aren't the best, I can attest to that.
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- It s just agonizing to wait. Oh tell me about it, been there and still waiting currently. It doesn t get any better the waiting is just the worse. I guessMessage 2 of 23 , Dec 29, 2003View SourceIt's just agonizing to wait.
Oh tell me about it, been there and still waiting currently. It
doesn't get any better the waiting is just the worse.
I guess experience is what is needed in issues like these. I
believe we will be in the best hands possible at CHOP.
This is absolutley correct, ortho surgeons are experience in all
different areas. In children such as ours that have other issues that
surround and maybe compound the spinal anomalies.
>any neurological signs?
> How did you find out your daughter had tethered cord? Did she have
I took her to my pediatrician early on about 3 months stating there
was something wrong I just wasn't sure what. She told me it was
nothing although she was not developmentally on track, not sitting
up, not bearing weight on legs etc. Her head had a tilt to it to the
right. I took her over and over again, and got the on call doc
because our ped was out sick. That was the best thing that happened
to us. You could see in his face he knew something was wrong. He sent
us over to the hospital for an MRI and low and behold was the
tethering. We were into the neuro surgeon one week later but had to
wait 6 more months for surgery because she has other illnesses that
plaqued her (she has 12 docs I'll email you about it at a later date
otherwise this will be a novel LOL).
I am sorry to hear that the progression did not stop after the
Me too it doesn't help that she is growing like wild flower, it just
gets worse when she goes through growth spurts like this one. It's a
good thing that she's not so small anymore she was stuck at 14 lbs as
a baby forever and after 2 she just started off.
Does she have any other anomalies of the spine? How old is she?
She is 4 and no anomalies so far, but I haven't had the best luck
with doctors. I was referred to a specialist out of state and found
that he had a colleaque in my state. We wasted a bunch of time and
money on travel expenses on top of getting our hopes up that this
surgical treatment would be the best for both her scoliosis and her
lung issues which get worse as she progresses. I actually had a
shouting match with this doctor for the hassles he and his staff had
put us through and told him I wouldn't let him operate on my dog.
Since then a few parents have contacted me and had the same
complaints about this doctor and his staff, we have made complaints
to the hosital but nothing has happened. So we wrote the surgeon I
wanted to see out of state to have him removed from the study. I have
also sent a complaint to the medical board.
We are now taking her to the surgeon I was orginally referred to out
of state and that has been a long wait because he has so many
patients. I wouldn't be surprised if they found fused ribs or other
anomalies when we got through the ct scan and other testing all over
again. This happened to another one of my internet buddies who
traveled from another country with her child. Her docs told her it
was just scoliois, when she saw this surgeon she found out he had
double fused ribs on one side. He just had his surgery at the
beginning of the month and is doing great. So I'm hoping for the same
outcome. My daughter is a strong little girl, she has been through
heck and back in her little lifetime.
It's so nice to have other parents to talk to, I hope your waiting
goes by quickly and we can keep one another updated.
- Please read the attached file.Message 3 of 23 , Apr 26, 2004View SourcePlease read the attached file.
- My name is amber and i am 16. when i was 12 i was diagnosed with scoliosis. I had a 52 and 64. When i was 13 i had the 9 and a half hour surgery to fix myMessage 4 of 23 , May 9, 2005View SourceMy name is amber and i am 16. when i was 12 i was diagnosed with
scoliosis. I had a 52 and 64. When i was 13 i had the 9 and a half
hour surgery to fix my curve. during the surgery he realized i had
spots that looked like huge birth marks, but they were not, they
were actually small (non cancerous)tumors.all was fine up untill
about 9 moths ago. i began havin really bad shoulder pain and i was
put into thearpy, hoping that it would fix the pain. the therapy
didnt stop the pain so my doctor(doctor loveless)decided that
removing the rods would end my pain and that my spine wouldnt move
because it was like(as he explained)that by putting the rods with
the bone tissue owuld be like fixing a tree that had been damaged
and someone tried string to fix it. So on march 25 2005 i had the
surgery to remove them(this was so much easier then actually putting
them in) the pain automatically went away. then about 1 month later
i began having side cramps but i didnt think anything of it. Thursday
(5/5/05) i went for a six week check up and he said everything on
the outside looked fine. But when he looked at my xrays he realized
that it wasnt. My spine had began to move to the left side, which
was causing the cramps. now he says that i have some bone disease
that causes bones to heal really really slow or not at all. and the
only reason the spine didnt move was beacuse the rods were holding
on it. and also he thinks my spine is also swelling from the
outside. so know i have to have a cat scan to cheack out my spine
to see if there is anything else wrong.(this is all related to
having the large birth mark lookin spots)so now he has to go back in
and put the rods back in and then 9 moths to 1 yr later he will go
back in and put more bone tissue to make sure it is really strong.
he also said he has ony heard about this happening once and has
never had any experience with a case like this, so what i was
wondering has anybody else heard of anything like this or
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He was a very concentrated, very intense young boy, about eight years
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