New to Dx

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

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New to Dx

Postby bchalman » Sat Jul 14, 2007 5:50 pm

My son, Clayton, was just diagnosed with Syringomyelia. We know that it is greater than 50% and is through the t6-t11. His only complaint right now is that he feels like he has a "stream" going down his r arm. Because there are no pedi ns who specialize in this in texas, upon recommendation we are traveling this week to see Dr. Frim, in Chicago. If anyone has any information they think might be helpful to us for this visit and anything else you think we might need to know, we could use all the help we can get. I feel like we are sitting on a time bomb from everything we have read. He is the best son a mother could ask for and I want to know anything I can do to help him. Thanks so much! Also, he has a younger brother and sister, does anyone know if they are going to recommend they be checked as well?

Blessings on your day,
Brandi
bchalman
 

Postby angie7 » Sat Jul 14, 2007 7:57 pm

Welcome to the board, but sorry for the circumstances that brought you here. Glad to hear that you will be traveling to Dr Frim, hopefully he will be able to shed some light on your son's SM. Do they know what has caused it like a tumor, tethered cord, ACM, anything at all mentioned?

I venture to say that they wont test your other children unless they start showing symptoms of SM.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby bchalman » Sat Jul 14, 2007 10:55 pm

The pedi ns we saw here in austin, first said that he thought he had a mild case of chiari malformation, a flow problem he said. He was recommending surgery on his brain, then I pointed out the fact that the report made mention of a lipoma and asked what this meant. He said, let me check that, then said that changes everything. He was now recommending surgery on what he said he suspected to be a teethered cord. Scary....that is why we are seeking a second opinion from Dr. Frim. We are worried that if he has surgery, we will be stuck doing this in chicago when we live in austin. That is going to be a little difficult, but I guess we will work through it.

Thanks,
Brandi
bchalman
 

dr.

Postby razzle51 » Sun Jul 15, 2007 7:13 am

Brandi there is Dr. Adada in Little Rock and peds Neuro . He is good.
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 angie7 » Sun Jul 15, 2007 7:59 am

Unfornuately most NL or NS locally dont know much about SM. I have heard of very rare cases where someone has found a local doc that can properly treat them. Having surgery out of state is very difficult. When I had my decompression surgery done 3 years ago, I had to go Missouri and I am from Indiana. Now I have to a cervical fusion surgery and I want the same NS to perform it b/c of its location. This time he is Colorado. We are flying out next Sunday for an apt with him on Monday.

I hope that Dr Frim will be able to help you. I know if either of my children had it, he would be the one I would see....

Maybe I missed it, but how old is Clayton?
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby bchalman » Sun Jul 15, 2007 10:34 pm

He is 8, he will be 9 next month. Thanks for the sharing your confidence in Dr. Frim. I needed that. Good luck with your flight and surgery.

Blessings,
Brandi
bchalman
 

Postby Mayzoo » Wed Jul 18, 2007 7:00 pm

We are also from Texas, and we drive (sweetie can't fly) to see Dr. Frim and do not regret it at all.

We have tried several NS locally that supposedly "know" about sweetie's conditions (ACM, Syrinx, Arachnoid Cyst)--but I have not been at all pleased with the ones she has seen!!

Go with your gut, see doc Frim--and tell him his girl Mary from Texas says hi :lol: !! We just got back on the 2nd of July (our second trip.)

Recommendations: try to stay at the Ronald McDonald house, if for no other reason than to talk to other parents whose children have/are where your child is--at least to some degree. They are GREAT people there at the house, and you can walk to doc Frim's office in 3 minutes!!

Pm or e-mail me if you want to know more.

Mayzoo[/i]
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