child generally unwell -- related to syrinx?

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

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child generally unwell -- related to syrinx?

Postby acupuncturist » Sun Nov 25, 2007 12:06 pm

Hi there - My 6 yo son has a 2 mm syrinx T7-T12. He does not have chiari (at least according to the radiologist that read his brain and C spine MRI). The symptom that prompted his pediatrician to order the MRI was urinary incontinence. We have been hassling with the pediatric urologist for almost four months now to get the urodynamic studies that the pediatric neurosurgeon has requested done. Now they tell me that they won't be scheduled until after the first of the year. Grr.

Anyway, I am concerned now about some other symptoms that I am wondering if could be related to the syrinx. He frequently complains of tummy aches, vomits on at least a weekly basis, looks pale and just generally weak and unwell. He also seems to have a more difficult time recovering from colds. This is a child who has always been very robust and in excellent health, so this is a big change.

Any thoughts or ideas?
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Postby razzle51 » Sun Nov 25, 2007 1:23 pm

I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby acupuncturist » Sun Nov 25, 2007 1:35 pm

Thanks, Razzle, but aren't these symptoms of Chiari? According to his 10/2007 brain/c spine MRI my son doesn't have chiari. Do the same symptoms apply to a thoracic syrinx?
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Postby Deanna » Sat Jan 19, 2008 3:21 am

my daughter, same boat as your son...only T-7-T11. She has had tummy aches ongoing, backpain, clears her throat constantly, missed alot of school..as well as other symptoms. She
lost bladder control once...i am trying to see what can be done before
more damage is there and may be permanent. I don't have any answers
for you, but do know the squeaky (but nice) wheel does get somewhere. Be persistent with drs.. they have seen the worst of the worst. Your child is important and quality of life if it is possible is worth striving for. No one cares for your child like you. Don't give up, if you are in their space enough.. they get sick of you and pass you on or approve what you ask for as you keep asking.
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Postby lalaswihart » Sat Jan 19, 2008 1:09 pm

see below
Last edited by lalaswihart on Sat Jan 19, 2008 1:13 pm, edited 1 time in total.
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Postby lalaswihart » Sat Jan 19, 2008 1:13 pm

I would suggest looking into the Chiari Institute and there findings on an occult tether cord...this is what my kids have and Dr Bolognese said it is what caused my childrens (all 4 of them) CM1. My daughter has regained control of her bladder and is almost headache free, also her scoliosis is starting to correct it self and her SM (which took up 70% of her spine) is almost flat. My twins will be having tether cord surgery on March 18th at TCI. I should also tell you this is a rather new finding they have been doing it for 2 1/2 years, I think it was the best thing every!!!!!

I almost feel like begging people to take a stand with there doctors, There is so many great doctors BUT they are not THE BEST CHIARI DOCTORs. my daughter had 5 surgeries in the last 12 months but the kicker is if we would have gone to NEW YORk first, she would have only needed 2 and been done.

Sorry for the rant if you have any questions feel free to contact me. I hope this Helps God Bless

Laurie
Mom of 4 Beautiful Children
8yr CM1/SM/EDS/ tether cord
6yr Twins Cm1/EDS tether cord
4yr CM1/EDS?/tether cord

"For nothing is impossible with God." Luke 1:37
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