Re: Syrinx

[Guest guest]

My 8 month old Sophia also has a syrinx, found on her first MRI a couple months

ago. Hers is from T10 (belly button level) down to conus (bottom of spine). Her

curve is also in her mid-lower back (39 degree before cast with 35 degree RVAD).

Two different neurosurgeons looked at it and said it was small enough that it

did not require any treatment. However, they want to continue to monitor it with

MRI to make sure it doesn't get bigger (more fluid in spine- which might mean

they would have to go in and drain it). She got her first cast at Shriners in

Erie last week and is really doing well in it. I would discuss the syrinx with

your doctor and if you haven't already, consult with a pediatric neurosurgeon.

Wishing Skylar all the best.

Tina

Syrinx

Has anyone heard of Syrinx before in the childrens spine? It seems

that Skylar has it (fluid build up)from T4 to T12.

We have an appointment with Dr. D' on June 25th. I just

overnighted all MRI, reports and xrays to her today. Do you think

I will hear from them before the appt.

It seems that the Neuro wants another MRI with die, but I can't get

an appt with him until the middle of July. I am not sure if I should

make the appt with him or just wait to see what Dr. D' says

about it.

We were told by our orthopeadic that she can wear the brace that we

were given (Boston Brace), but when I put it on her it is so

uncomfortable that she can bearly breathe. She is 23 months old and

has a terrible gas problem. Every xray we ever took has had a huge

gas pocket in her belly. She farts all the time and to push her

belly in as far as possible is so uncomfortable for her that I just

think there should be something else I can do for her. I am hoping

the cast is the answer because it also has the cut out area in the

belly so she can expand her belly with out so much discomfort.

I am so ripped up by all of this that I just wish I could take her

place and have all of these issues go away for her poor little body.

Thanks everyone for reading and I read this everyday or otherday to

get as much information as possible.

Hugs and kisses to all of you!!!

Chamberlain

Skylar (23 months) infantile scoliosis 36 degree curve