Re: tc?

[Guest guest]

Hi :

I am no physician but I work in health care and it seems to me that a pediatric

neurosurgeon is the best qualified to make this determination...you don't say if

this is a pediatric one or if they have any experience with it. The profile of

symptoms seems classic TC but it could be other things. From what I have read,

as the child grows nerve damage can result because the nerves are " tied " and not

free to float in the spinal fluid. There are also various types of tethering

for which I am far from knowledgable. I cannot say enough good things about my

child's Peds NS. Dr. Wehby at Emmanuel Children's Hospital in Portland,

Oregon. People come from many states to see her for TC. If you do not want to

come that far, perhaps they could recommend colleagues in the Sacramento or San

Francisco area who could see you.

Here is an NPR article on her and TC and her address/phone.

http://www.npr.org/templates/story/story.php?storyId=5309511

501 N Graham Portland, OR 97227. Phone :(503)413-366

Good luck. It is best to start right away because it takes months to see these

specialists. Perhaps if you tell them about her pain they would be able to work

her in sooner. Good luck,

>

> My daughter Madelyn has hydro and chiari 1.She is shunted and was

> decompressed. In the last 14 months or so she has been having the

> following symptoms. They occured 1 at a time. MRI of the lower spine was done

about 7 months ago and nsg said it was normal. She has a almost

> constant frontal headache:

> neck pain started complaining of about 15 months ago

> lower back pain about 1 yr ago,she complains when we are in the car when we go

over bumps

> pain in the back of her upper legs about 13 months ago,she refuses to

> walk or not walk very far most of the time.

> she started having bladder issues around 5 months ago. She has a hard

> time going. VCU was normal according to pediatrician but retaining urine

according to urologist. UDS done urologist said she is retaining urine. She said

based on her symptoms she thinks its very possible Maddy has

> TC.

> Maddy always had a problem with constipation even as a baby. I have

> spoken with her nsg and he said he wants to send her to the stanford

> pain clinic. I feel as if he doesnt want to even look into the

> possiblility of a tc. We live in Fresno,CA but I am getting her records

> together and scans to send to another nsg for a second opinion. There

> are no other docs within 3 hrs of here. Any recommendations for docs? Is it

possble that Maddy has a tc? If untreated what will happen. Thank

> you.

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