chiari institute, Newyork replied to my email!

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

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chiari institute, Newyork replied to my email!

Postby sarina » Sun Mar 23, 2008 4:35 pm

Hi,
i posted a couple of weeks ago about my 9 yr old daughter with syringomyelia. We live in the Uk. My daughter has just spent most of the week in tears ,her pain has got so unbearable she can't manage very much at all. Her walking is almost non existant and the pain in her back is intolerable.
Many of you made suggestions of neurosurgeons to try, I have several replies,all happy to look at her mri, if I can get a new one!
Anyway, I looked on the internet at www.bbc.co.uk which is out tv news channel. I put in a search for syringomyelia, and i was gobsmacked. There was a feature about a lady who had gone to new york for treatment and her telephone number. I rang her and she told me to get straight onto the chiari institute. I had a reply from Dr Bolognese that makes all the videos!He will happily look at her mri and get back to me.
Many people in england tell me to avoid the US as they tell me that people will just take my money and promise me the world. There seem to be many success stories on this board though. No one is prepared to help my daughter here.
My daughter is taken 50mg of codeine 4 times a day, and it does very little to help.
Has anyone been to the chiari institute?
sarina
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Chair institute

Postby lcolangelo » Tue Mar 25, 2008 8:54 am

I have a 9 year old daughter with a chiari malformation-- we went to the chiari institute in Ny-- for a consultation. They were--ok-- but we found Dr. Arnold Menezes at the University of Iowa-- the doctors at the chari institute even said that he was the best in the country. It is a wonderful facility with an excellent Ronald Mcdonald House--- we have met people from all over the world there-- they all travel to see Dr. Menezes-- hope this helps-- I know how scary this all is-- God Bless you.
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Postby angie7 » Tue Mar 25, 2008 9:13 am

The top peds SM specialists are Dr Menezes in Iowa and Dr Frim in Chicago, Ill. I know there have been a lot of adults that have found help at TCI, but I'm not sure about children.
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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Postby Bear » Tue Mar 25, 2008 1:32 pm

Dr. Frim in Chicago is excellent. You can also contact Dr. Carson at Johns Hopkins in Baltimore, MD. You can email both docs from their web page. They both get back to you quickly.
Good luck!
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Postby KyliesSis » Tue Mar 25, 2008 2:31 pm

I recommend Dr. Frim in Chicago. When my sister saw him, he was wonderful. He looked at her MRI, and (because we are Canadian) gave us advice on insurance companies, and where to go from there. He doesn't just diagnose your child, he gets to know them, and tries to help you out in different ways. I highly recommend him.
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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Postby amr » Fri Mar 28, 2008 4:36 am

:o Hi I too am in the UK. My daughter was diagnosed in january of this year by MRI. we were told by our local paediatrician (4 days later when he got the results of the scan) that she had syringomyelia (no mention of Chiari) and referred to a neurosurgeon at Alder Hey in Liverpool. We saw him the same week and were told that the syringomyelia was caused by Chiari malformation and she was operated on 12 days later!!!!!!!!!!!

(Her post op period was complicated by having to be readmitted 4 weeks later as she had been suffering from nausea and vomiting and had lost 1 and 1/2 stone in weight and she now has a shunt for hydrocephalus and doing really well -back at school and doing almost normal activities)

I dont know if you have seen a neurosurgeon here in the UK but if not then mither your GP as our surgeon says Chiari is well known to him and he does approx 350 decompressions per year (adults as well as children) but most GPs will not come across it ever in their careers.

Symptoms prior to surgery:

Numbness down right side
Balance problems
Blurred Vision in Right Eye
Voice changes
Permanent Hiccups

Symptoms still there but we were not expecting recovery just halting of progression
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