new to sm

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

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new to sm

Postby kaleighsmom » Thu Jan 03, 2008 8:04 pm

Hi, My 15 yr. old daughter was recently diagnosed with sm. she has a syrinx on C5 & T10, both were considered to be very small however we will do anpther MRI in five more months.
The difficult part of this for us is that she complains of pain in both areas daily yet the NS we saw at Children's in Boston does not feel as though the pain is related to the sm diagnosis. He said it is not generally associated with pain.
We need help! She has missed a month of school from pain and being on so many medications. She is drained.
If anyone can clue me into what I should be doing as a concerned mom please do so. I am also interested in finding a doctor that can shed some light on what she is going through and maybe help her. We are in NH. Thanks, Diana
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Joined: Thu Jan 03, 2008 7:17 pm

Postby angie7 » Thu Jan 03, 2008 8:38 pm

First, I am sorry to hear about your daughter.....My second thought is run away from this doctor! SM very much can cause pain, doesnt matter how big or small. With this disease being rare, many doctors are not experienced and just brush it off as no big deal. Also with this disease, travel is a must for many of us. The true experts are a must when dealing with SM. I live in Indiana and travel to Colorado to see Dr Oro, one of the leading experts in CM/SM. Has she has a brain mri to rule out CM (Chiari)? CM is the leading cause of SM, so this needs to be addressed.

Dr Frim in Chicago and Dr Menezes in Iowa are the leading SM experts dealing with children. I would contact them first and go from there..I attached their info below

Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: (773) 702-2475
Office Fax: (773) 702-5234

Dr. Arnold Menezes
University of Iowa
Hospitals and Clinics
Iowa City, Iowa 52242
Phone 319-356-1616
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby lalaswihart » Thu Jan 03, 2008 10:04 pm

I am sorry your Daughter is having to go through this and I hope this finds you some direction and some info. to point you to were you need to be for her.

I also say run from this doctor, My daughter Had a great doctor who also did not believe her symptoms and pains were from her Cm1/Sm and even after he preformed two surgeries on her she was still hurting and having even more symptoms.
So we traveled to New York to the Chiari Institute and met with Dr. Bolognese who I recomend with all my heart and, He confirmed that Caroline symptoms and pain were related and We had two surgeries. I have a daughter who is not in pain all the time anymore and who is back to a simi-normal life.

i gave a a link below if you get a chance look at the videos I know they helped me.
Good Luck and God bless and I will say a prayer for you and your daughter.
in Tx
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