Suggestions needed!!!

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

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Suggestions needed!!!

Postby sara b » Fri Jun 27, 2008 12:19 pm

Hi,

I am the mother of an 9 yr old daughter with chronic back pain. We have been back and forth to the Dr. for 10 months now. She has been treated for lyme's.
Recently she had a MRI done and they found a Syrnix. A second MRI was done and they said she had CM. I took her to the Children Hospital of Philadelphia to see a Neuro surgeon, He spent about 10 min with us and said it was nothing. We came home and called our family Dr. and the imaging center where the MRIs were done. 3 days later we were informed by our DR that the imaging center felt they read the MRIs wrong.

Yesterday we headed to another Neuro surgeon who spent about an hour with us. He said she definetly has a syrnix. He would like her to have a 3rd MRI and a MRA for futhre study. At this point I just do not know who to beleive and what I should do next. Does anyone any suggestions?
:?
Does anyone know if there is an over the counter pain releiver that I can give my daughter to stop the pain?
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Re: Suggestions needed!!!

Postby dizzydaisy » Fri Jun 27, 2008 6:46 pm

for neuro pain: neurontin or lyrica are usually prescribed. i've tried them, but i found they made me drowsey, but everybody's different, so go with what you find best.

the only advice i can give is get a true expert on board and i'm sure you'll feel better navigated through this mess.

best wishes,

DD xx
Stick to the fight when you're hardest hit -
It's when things seem worst that you must not quit!
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Re: Suggestions needed!!!

Postby sara b » Sat Jun 28, 2008 10:12 am

Hi,

Yes, I think finding a true expert is part of the problem. I am so confused and feel so helpless when my daughter says "Mommy my back hurts".

Sara
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Re: Suggestions needed!!!

Postby mikewk » Sat Jun 28, 2008 2:16 pm

I would definitely get additional testing done and find the right MD's which can be a hassle to find. We have been dealing with our child with cervical syrinyx since age 16,diagnosed finally at 17, he is now 18. We live in Ohio. I do not believe that they will put a 9 yr old on Neurontin or Lyrica. Our son tried these but even though they helped with his pain they played havoc with his memory and concentration abilities so he is off all of those. He is just on celebrex which seems to help his headaches, nerve blocks for his chest pain and he has learned just to deal with all the rest of the pain. Sometimes a heating pad or ice helps but he has to be careful because he has lost a lot of ability to tell the differences between hot and cold. Again your daughter is young and as a prior neonatal nurse I know that babies and children are not adults and therefore their drugs and amounts are very different. We just had a neurologist in Florida recommend Dr. Ben Carson, a pediatric neurosurgeon at John Hopkins review our sons case and it is rated #1 in the country for pediatric neurosurgery. The answer is find the right doctors and right tests so that an accurate diagnosis can be made. Best of luck
Mikes MOM
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Re: Suggestions needed!!!

Postby lljacskon » Sat Jun 28, 2008 9:49 pm

Hello Mike's Mom,

My DD was dx'd with a cervical syrnix cyst also. She just turned 19 in April. She started getting symptomatic in October, and her PCP sent her for a MRI. This was when we found the dreaded thing!!! This has been sooooo difficult to manage medication wise. She was in her 1st year of college, and her NL put her on Neurontin. She had a 8:00 class Monday thru Thursday, and she was too foggy headed to take it and try to function the next day. So....she would take it when she felt like it, and skip it most nights. I, too, am a RN and did not realize that she needed to be on this and not take it whenever she wanted to.

Now that she is out for the summer, she has started taking it religiously. The neurontinhelps her deal with the pain so much better. I hope and pray that your son can find the right balance for the meds that he needs.

I know how difficult it is to watch your child suffer. Kaylie just walked in the door at 10:30 on a Saturday night, becasue she has had several bad days, she came home early to go to bed. That just absolutely breaks my heart. She should be wanting to stay out late....trying to push past curfew....but no....this dreaded disorder has taken to much out of her.

I will pray that you find answers soon for your son Mike.
Much love to all,
Lisa (
Kaylie's Mom)
My beautiful daughter who has Chiari 0 Malformation and SM
Decompressed 6-16-09
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Re: Suggestions needed!!!

Postby brianfsmom » Sat Jun 28, 2008 9:51 pm

sara

where do you live? there are several doctors in the nyc area who would probably be able to help you, certainly would give you more than ten minutes and a dismissal. otherwise, i agree ben carson is highly recommended if you are south of phila ... good luck.
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Re: Suggestions needed!!!

Postby Beach4me » Mon Jun 30, 2008 8:53 pm

I agree with the others that have responded. My dd had CM1 and syrnix. Find a Chiari Pediatric NS. We visited three pediatric NS's and only one was a specialist. The other two were clueless. One said that by reading her chart and MRI, she probably had Chronic Fatique. At 13??? Good thing I had the internet and had read up on the subject or I might have taken his word for it.

She had decompression a couple weeks ago and what a difference. Don't give up. Read the boards, research and I am positive someone here can recommend a Dr. or two.
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