How is this possible??

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

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How is this possible??

Postby gncrzy3 » Tue May 04, 2010 5:20 pm

First I am desperately searching for a GREAT pediatric neurosurgeon in PA who takes medical assistance who is very well versed in SM... and possibly tethered cord, and arachnoid cyst in brain. I have sm. chiari, corrected basilar invagination, and tethered cord. In the last month my 9 year daughter was diagnosed with SM C5-t 12 and a posterior fossa arachnoid cyst in her brain. I had my son tested because of headaches, leg and hip pain, neck pain ext. His came back with SM, but in seperate areas of his spine, some in thoracic and some in cervical. but the syrinx are not continuous. The pediatric neurosurgeon we saw in Pittsburgh, refuses to believe that the kids syrinx's are causing any problems and are nothing to worry about. It took them a total of 15 years to get all my diagnosis ...
and now my syrinx is from c3 - l1 and is large in some areas and small in others. I have yet to find a neuro surgeon who is willing to shunt it as they say it is too risky,, even though it has both widened and elongated in the last year. I am scared to death that they are just going to allow my childrens spines to deteriorate to the point my has. I have been told it is not hereditary.. well I have at least 2 out of 3 children with it!!!! I am setting my 13 year old up to be tested. I can not get the neurosurgeon to do any other testing!!?? I don't understand how with my history, they can say that my children's syrinx are not of any significance!! My son complains of sever pain, my daughter has notable difficulties in her neuro exams... HELP!!!!
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Re: How is this possible??

Postby memom » Wed May 05, 2010 8:49 pm

I am so sorry that you and your family are going though all this. Please know you all are in my thoughts and prayers. My daughter has CM, SM and Ehler-Danlos. Her neurosurgeon is Dr. Robert Keating at Children's National Medical Center (CNMC) in Washington D.C. He serves on the medical advisory board for this organization and has lots of experience. Dr. Keating and CNMC have guided, advised and supported us in sooo many ways. We drive all the way from North Florida to Washington to see him, it is worth every mile! Keep us posted and know that we are thinking of you.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: How is this possible??

Postby Lipper5 » Sun May 16, 2010 10:10 pm

Did you try Penn State Hershey? My son goes there. And recently had a shunt placed for the syrinx. Any info you need please let me know. Good luck! We have two sons diagnosed with Chiari and one with the syrinx.

Krista
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Re: How is this possible??

Postby lcolangelo » Mon May 17, 2010 9:13 am

Did you ever see Dr. Albright at Pittsburgh Children's? We saw him for a second opinion once-- he was very kind and seemed very knowledgeable-- he did not do my daughter's surgery though- she had a chiari and basilar invagination also - we are from Buffalo NY-- and travel to Iowa to see Dr. Menezes-- Dr. Albright actually reccomended him as the "expert in the field" . Hope all goes well.
LIsa
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Re: How is this possible??

Postby gncrzy3 » Tue May 18, 2010 7:52 pm

I have an appt at Hershey for them,.. I hated the arogant idiot I saw at children's.. it was not dr albright, but he is not wiling to look for anything else.
And as I understand it. syringomyelia in itself is not hereditary,, it took 7 years for my chiari to show up. I have also been diagnosed by 2 neurosurgeons with occult tethered cord.... so i need a doctor who is willing to LOOK for the other causes! thank you for all your advise.. I won't be on the boards for a while wile I am recovering from the tethered cord surgery., so please keep us in your thoughts and prayers!!
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Location: western PA

Re: How is this possible??

Postby johacas » Wed May 19, 2010 6:16 am

I also went to Children's and couldn't stand the neurosurgeon we saw there. We then went to Hershey and loved that neurosurgeon. He was wonderful, kind, and caring. He made Cassidy feel very comfortable and she was able to finally start to understand what was happening to her. Unfortunately, my insurance doesn't cover us at Hershey so we are back to square one. We are doing nothing right now because we are so discouraged. Good luck to you - I'm sure you will love Hershey!!
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