Pain associated with SM?

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

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Pain associated with SM?

Postby perservance » Mon Aug 02, 2010 1:09 pm

My 6 yr old was dx with SM on Wed- affected entire throacic area. NS stated that the intermitted pain he is experiencing down his legs, arms/hands, tongue tingling, migraines are unrelated to SM. He also struggles with severe adominal cramping. Have you found this to be the case with you or your child? We are considering a NS second opinion.
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Re: Pain associated with SM?

Postby razzle » Thu Aug 05, 2010 7:16 am

get rid of that dr. here are symptoms ... N=symptoms
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Re: Pain associated with SM?

Postby Sue » Sat Aug 07, 2010 7:42 am

I concur - find a new doctor.
We were told virtually the same although our 7 year old spoke of the classic syrinx symptoms - which she could not possibly have known! Syringomyelia is a difficult disorder on many levels - one being that it's rarity means that many doctors have not truly seen enough patients to understand that a syrinx truly can cause pain and debilitating symptoms. We have found that neurologists are more likely to "believe in" syrinx pain than are neurosurgeons.
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Re: Pain associated with SM?

Postby regina » Fri Aug 20, 2010 1:24 pm

My daughter was dx with SM CM hcephaleus at the age of 6 she is now 10. We found that she as a baby had problems with pains and cramping in the stomach her symptoms also included pain mainly in the legs hands and arms and tingling. Poor feeding and little weight gain.

She now has a colostomy as her bowel was not working properly we only found this out when she was transferred to Great Ormond St we live in Northern Ireland. Her consultant in N Ireland feel there is no connection but the consultant in England disagrees with this he says that there is a link. Her hearing is also affected she now as of a year and a half ago wears a hearing aid. She has had many surgeries and at this stage after her last being Decompression and laminectomy, her complete syrinx of the spine has partly collapsed but the neurosurgeon is not sure if it will return over time.

I would advise you to get another opinion as I feel my daughter had many issues as a baby and everything was been dismissed as she is a twin and they felt she was just the weaker one but so many signs were there but it was not picked up.
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Re: Pain associated with SM?

Postby perservance » Wed Sep 15, 2010 9:01 am

Thank you all for your encouraging words. It is hard being the mama and not being able to fix my son's pain with a boo boo bunny. We have a second opinion on Monday 9/20 Dr. Tulipan @ Vandy. We are praying for wisdom for the NS and for us to be able to discern the recommendations. Trying not to get too anxious :roll:
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