Hello all just a word about picking the right DR.'s

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Hello all just a word about picking the right DR.'s

Postby lalaswihart » Thu Jan 03, 2008 9:50 pm

Hi my name is Laurie I have had a crazy couple of years.
My daughter who at 6 years old started complaiing of headaches tummy- aches and leg and arm pain/numbness. was diagnosed with CM1/ SM from c1 to t12 at wides point 9.5mm, over the next few months seeked out HEAD of Neruo at TEXAS CHILDRENS Hosp. who said no big deal, 2 to 4 hour surgery small bone removal, decopression surgery, less than two months later things were worse, another surgery to put in dura patch. She then was even worse. After second surgery started research for best CHIARI DR on internet, found Chiari institute NEW YORK watched all the videos with Dr Bolognese and could see my daughter symptoms laid out on the white boards but, being that we were from Texas and it was far from home and Dr here said most if not all her symptoms were not related I was sceptical, but still i felt God was leading us there.

When we got there and met with DR Paolo Bolognese, who confirmed some thing and also told us some things we were not expecting that our daughter who had been through two surgeries in the last 5 months was not decompressed that she had no flow on the back side of her skull and that her brain stem was very elongated, she also had a retroflex adontoid bone and her SM was bigger and her spinal cord was being pulled down between her L2 and L3, Then he said she had what they call an ocult-tether cord, it can only be deternied by the longation of the brain stem and the longation of the spinal cord.

so she would need the following... Tether cord surgery and then one month later re-decompression which would include shrinking up the herniation and cutting a bigger hole and dura patch of her own membrain.

After surgeries I came home with a very differnet child I found the sweet loving little girl who was not always in pain who wasn't upset because she wet the bed, and who after almost 1 year of not being able to color with out her hands hurting could color for two hours straight, and then look up at me and say "Mommy...my hands do not hurt and they do not have that sleepyfeeling, isn't that awesome!!"

I know this is long winded and I thank you for reading if you made it this far, I just know that there are others out there who have children who are still having problems, even after there surgery and or who are not getting anywhere with your doctors and I felt lead to tell my little ones story.

I know that Dr. Bolognese and Dr. Milhorat at the Chiari Institue are deicated to finding a cure for Chiari and dicovered the ocult-tether cord about two years ago looking for this cure. I feel confident that they know what they are doing and it is all they do, and I know they learn more every day. I know that they can help, they help my sweet little girl.

There are amazing Neruo. Surgeon all over the world but are They Chiari Surgeons is the question???? I hope you ask this everytime. I wish I had asked...

:) Sincerely,

8 year old CM1/sm and elhers danlos
6 year old with CM1 headed to New York in Jan
6 year old possible Ocult Tether cord
4 year old possible CM1
Posts: 61
Joined: Wed May 23, 2007 12:32 pm

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