confused with questions

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

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confused with questions

Postby conniern » Sun Aug 09, 2009 6:10 pm

My 7 year old daughter was diagnosed last week with a syrinx in her spinal cord after complaining of headaches and "pins" in her hands and feet. I have been a RN for years and have never even heard of this. I was told by the NS to google it... There is limited info available and I want to know exactly what I can and can not allow her to do to prevent worsening her condition.. Is the prognosis as grimm as the internet has portrayed this? Is there really no hope other than a shunt in her spinal cord? Can anyone direct me to a NS that specializes in this so I can get another opinion??

Thanks in advance for any information!
conniern
 
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Re: confused with questions

Postby memom » Sun Aug 09, 2009 9:46 pm

My 7 year old daughter is undergoing treatment for Chiari 1.5 and Syringomyelia at Children's National Medical Center in Washington D.C. Her NS is Dr. Keating and we could not be more pleased with our experience with him and Childrens National. We live in Florida and were able to have all her MRI images sent to him for evaulation. In our case we needed to have addtional testing to measure spinal cord flow and we decided to do this at Children's. Everyone at the hospital made us feel so comfortable and we were well taken care of. We stayed at the hospital hotel on the campus and walked to all her appointments. Dr. Keating is great! We cannot say enough good things about working with him. He is engaged and passionate about his work - his staff is the same way. Unfortunately for us, my daughter had to undergo surgery. She has a curved brainstem, syrinx and limited spinal cord flow. Her symptoms were headaches, double vision, eye pain, neck pain, leg weakness, loss of balance, the list goes on.

I decided to go with Dr. Keating and Childrens National after receiving terrible treatment in North Florida. I looked and looked and after reviewing literature, hospital ratings and NS experience, we went with Dr. Keating. The hospital has a great reputation and again, we are so pleased with our experience. Send Dr. Keating an e-mail and he will respond promptly. Working with him over the internet was a fantastic experience. We have a written record of all our conversations, images can be transferred this way and Dr. Keating responds to your questions - not his staff.

My daughter is now 10 days post surgery and doing great. I knew she had pain, but I did know how much until three days after surgery when she said to me "Mom, I never knew I could feel this good." She is transformed. No more pain and she regained clear vision within hours after surgery. We are still in the healing process but we are very optimistic about her recovery. The team at Children's National is awesome. I cannot say enough good things about our experience.

Good Luck!
MEMOM
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
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Re: confused with questions

Postby jupes » Mon Aug 10, 2009 12:07 am

Hi and Welcome!

I could have wrote this same post 1 1/2yrs ago when we were searching for answers to some of my daughters symptoms. I am also an RN and had never heard of Chiari or syringomyelia! I remember how scared and devastated I was when I started searching the internet for answers too! :shock: :cry: The best thing I could do to help my daughter was to educate myself on this and seek out an expert peds NS. I am finally at a stage of peace and acceptance with this. By the grace of God she has not needed surgery and is doing well right now! :D She sees a NS about every 6-8mos and gets periodic MRI.

This condition affects everyone differently. Some do have major progressive symptoms and pain but many others have minimal symptoms and go years without progressing.
Most syrinx have a cause such as chiari. Make sure she gets further testing to find a cause. Ideopatic SM is very rare! ASAP has some good educational articles and you can request an informational package and download a CM/SM handbook that is very informative. There are a couple online videos in the ASAP library that discuss Peds issues.

The ASAP medical conference in July had some of the top Peds CM/SM experts in the country speak. I would highly recommend seeing one of them for an expert opinion.
Where do you live? I was very impressed with Dr. Keating too! Some other great experts are Dr Frim (Chicago), Dr George (Austin TX),Dr Menezes(Iowa),Dr Jerry Oakes (AL),
Dr Iskandar (Madison WI). There may be some others closer to where you live too!

Hang in there!
(((HUGS)))
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: confused with questions

Postby conniern » Mon Aug 10, 2009 6:53 am

Thank you again for responding so quickly.. We live in near New Orleans, LA. We are currently seeing a NS at Children"s Hospital in New Orleans, but I am not afraid to travel with her...any distance! She has some symptoms, and they are transient but I do not see that they are getting "better"...headaches, numbness in hands and feet, loss of feeling to her legs when she first wakes up, and last night she cried because of the back and neck pain that she was having. We are scheduled to return to the NS this week. The initial MRI did not indicate that she had a Chiari malformation, he said they will sedate her and repeat the MRI to r/o a tumor. I appreciate any/all advice and support! Thanks again!
conniern
 
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Re: confused with questions

Postby jupes » Mon Aug 10, 2009 8:07 am

You mentioned that she has no chiari. This can be missed especially if she has a minimal herniation. Check out these sites that include articles on minimal herniation. chiarione.org and conquerchiari.org. Has she had a CINE MRI to check for obstructed CSF flow?

You could start by emailing Dr keatinig and Dr Frim {University of Chicago) for direction/opinions. I know both of these Docs are great and may view your daughters films by mail.
Many are happy with Dr. George in Texas too!

Good luck!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
jupes
 
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