I need HELP

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

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I need HELP

Postby gncrzy3 » Tue Apr 13, 2010 3:35 pm

I have syringomyelia from my c-3 to my L!, i was diagnosed at the age of 27, then 5 years later I was diagnosed with basilar invagination, then 2 years later with a chiari malformation ( they couldn't see it until after the the basilar invagination surgery) and a tethered cord. My 9 year old daughter was diagnosed 2 months ago with an arachnoid cyst in the posterior fossa of her brain, then with SM from her c-5 to her t -12 at the widest portion is was 2 mm or cm can't remember which. They are saying that she does NOT have any other disorder, and Children's hospital says there is NO occlusion of the flow of cerebral spinal fluid. HELP!!!!
I was told that it was NOT genetic!! And I was also told that unless my kids had one of the other disorders, that they could not have it?????????!!!!!!!!!! No one seems to be answering my questions, I hated the neurosurgeon she saw. My 11 year old son is now complaining of MANY of the same type of symptoms. I do have an appointment to have him evaluated. If ANYONE has any input PLEASE advise! I am terrified that they are going to just let her cord deteriorate. Also are there any support groups for kids or parents of kids with SM? Also is there any help for people with SM? We have been putting over 1100 miles a month on our vehicle because we live in a rural part of PA, and there are no doctors close that will touch either of us with a 10 foot pole. I am freaking out and don't know what to do.
Thank you in advance!!!!!!!!!!!!!! Charity
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Re: I need HELP

Postby lttutrow » Tue Apr 13, 2010 9:08 pm

I can't help with dr. info., but I bet someone else can chime in with ideas, sorry. Regarding the genetics, I think what they generally recommend is that when 1 parent or child has been diagnosed, if another child starts exhibiting symptoms they too should be scanned. While there seems to be no firm answer yet about how often it is genetic, there is a genetic factor, and many here have more than one family member with it. You might try the support group in PA to see if there are parents or kids involved and where they meet, www.chiaripeopleofpa.com . They may also have Dr. ideas.
Best wishes,
Lori
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Re: I need HELP

Postby Lipper5 » Wed Apr 14, 2010 5:19 pm

Quick question- what hospital did you go to and what Dr did you see? We went to CHOP and that was terrible! We are doing a study with Duke University right now to see about it being hereditary. Both my sons have Chiari type 1 and one with Syringomyelia.

Krista
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Re: I need HELP

Postby lcolangelo » Thu Apr 15, 2010 7:00 am

Well-- I have 3 children with chiari-- not sm-- they def. think there is a genetic component to it-- they're still studying to find out exactly why. Where is Penns. are you? We're from Buffalo-- but travel to Iowa to see Dr. Menezes-- he is well worth the trip. Dr. Albright at Pittsburgh Children's was very kind and knowledgeable as well (we saw him for a second opionion before we went to Iowa). You def. should look for an expert in chiari/sm-- good luck to you== I'll keep you in my prayers!
LIsa
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Re: I need HELP

Postby Lipper5 » Thu Apr 15, 2010 8:04 am

Also just to let you know both of my sons go to Penn State Hershey and see Dr. Iantosca. He is wonderful. He did both surgeries on my youngest son. I have consulted with many Dr. and he was the best I could find.
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Re: I need HELP

Postby memom » Thu Apr 15, 2010 8:31 am

I am sorry to here that your family is suffering. We see Dr. Robert Keating at Children's National Medical Center in Washington D.C. He is very experienced and a wonderful person to work with. We love him! We travel from North Florida to Washington D.C. every six months to see him. It is worth every mile!!!! Please keep us posted.

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: I need HELP

Postby gncrzy3 » Sat Apr 17, 2010 7:13 pm

I live in Brockway PA.. we are not far from NY boarder.. we go to Childrens Hospital in Pittsburgh,, I LOVE the neurologist.. HATE the neurosurgeon. I see Dr Frazier Henderson In Bethesda MD, and I sent him her scans, but we have not heard back yet... I AM FREAKING!!!!!! I understood that there was a genetic component to chiari,, but so far all she has been diagnosed with is SM. They swear there is no occlusion and no other disorders. I don't know what to do!
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Re: I need HELP

Postby Lipper5 » Sun Apr 18, 2010 7:20 am

Some Dr believe in Chiari 0....
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Re: I need HELP

Postby texassyrinx2 » Sun Apr 18, 2010 9:56 pm

Chiari and SM seem to run in families suggesting it has a genetic link associate with at least some forms of the disease. However to my knowledge they have not definitively identified the gene or family of genes that may be altered in these disorders. My thought has always been it might be genetic or maybe I aquired my SM after a fall, but however I got it I have to realize that I have it and it isn't going away. My mom use to kid me and say I got it off a dirty toilet seat! I lost her last year. She was biggest support for the last 20 years that I have had to deal with this condition and other associated complications. If you or your children have been diagnosed, then find a great doctor or travel to one of the specialist you can find on this site. I chose Dr. Oro who I just love! Good luck on your journey. It won't be boring I can assure you that.

From Texas,

Mary-Ann
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Re: I need HELP

Postby gncrzy3 » Mon Apr 19, 2010 8:25 pm

My neurosurgeon has done HUGE studies and written for journals on Chiari 0. SO where in PA can I find a good, knowledgeable neurosurgeon for her? My son sees the neurologist tommarow to have mrii's set up and be evaluated, PLEASE wish us luck!!
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Re: I need HELP

Postby Lipper5 » Mon Apr 19, 2010 8:42 pm

Penn State Hershey Medical . Dr. Diaz and Dr. Mark Iantosca
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