also in pediatrics/ 3 year old with syrinx

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

also in pediatrics/ 3 year old with syrinx

Postby mamashu5boys » Thu Jun 21, 2007 12:31 pm

Hello,
A new friend let me know about this sight, thanks Angie!
I tried posting this yesterday in pediatrics and it never showed up, so I’m going to try again today forgive me if I post more then one copy.

I have a 3 year old Keegan; he has a "large" syrinx along with his congenital scoliosis as well as other birth defects. He does not have a disorder the geneticist thinks his problems happened from damage when his egg split from his twin brother (who is fine). Keegan had a detethering surgery last fall, it was our hope that it would allow his syrinx to drain naturally. We just had the follow up MRI and the syrinx is unchanged. I'm worried that the doctor is going to now insist we do another surgery to drain the syrinx.
I'm not convinced that another surgery would help all that much. At first we suspected nerve damage in my son’s feet because he would just stand there barefoot on hot sand when his brothers would be hopping around and crying out. Now I'm not sure if he really has any damage, I can tickle Keegan's feet without much trouble, it might take more pressure then his brother and it might not, I just can't tell for sure!
Keegan is already going to need many spine surgeries for the scoli; I just want to wait as long as we can. I don't want Keegan’s nerve damage to get worse by not operating soon, but what if I put him thru a risk surgery for little result? On Keegan's new MRI report it also says they suspect narrowing of the cervical spine, I've read that this can also cause lower nerve damage, so now I wonder if the syrinx isn't even the problem? I will get to talk to our new neurosurgeon on July 16th, until then (maybe even after then) I'll be going crazy. LOL
Thanks for listening! (You can check out the picture section on my web page to see a picture of the MRI scan)
Tiffany
Mama to 5 beautiful redheaded boys


http://babyhomepages.net/5smurfyboys/index.php]

Rory 14, Evin 10, Brandel 6, Keegan & Conley 3
Keegan has progressive congenital scoliosis at 61° a hemi vertebra at T-5, two fused ribs, several vertebrae fusions, a rib hump measuring at 14, a missing right kidney, scatterd areas of abnormal signal within the brains white matter, sacral hypogenesis, L2 conus with a filar lipoma. He also has a syrinx causing lower limb nerve damage. His tethered cord release surgery was on Oct. 18, 2006
mamashu5boys
 

Postby mac » Fri Jun 22, 2007 12:34 am

mama, thanks for sharing your story with us. Keegan has so much going on, doesn't he. I tried the link you posted but it didn't work. I'm sure he's a cutie!! 3 years old, he shouldn't be dealing with surgeries and stuff...it all seems so unfair. Sounds like he has an incredible Mom, though!!!

As I read your post, one thought comes into my mind. You need to have a doctor (and maybe you do have one?) that you totally have confidence in and that you trust. With all that Keegan has going on, you have so many questions and a lot of confusion. A true expert is SM, esp pediatrics, would be the best thing for you because then you can maybe stop trying to figure things out and second guessing, and rely on the expert. Dr. Frim in Chicago is a well respected full time expert for pediatric SM/CM. That is one option that at least I know of.

I have visited an expert for my own situation and have learned what a difference it makes. To have total faith in what the surgeon says is happening and what needs to be done, it makes life actually easier because at least I'm not agonizing over making decisions about things I really do not have the expertise to judge. Know what I mean?

How do you feel about Keegan's surgeon? One thing we've found to be true is that most of us will have to travel, sometimes great distances, to get to that full time specialist with the deep interest in CM/SM. But it is completely worth it. You would get a plan for surgeries etc and feel confident. So, that's my thought about your post.

I'm glad you found Angie and you found your way here!

hugs
mac
Last edited by mac on Sat Jun 23, 2007 9:30 pm, edited 1 time in total.
mac
 

Postby angie7 » Sat Jun 23, 2007 9:13 pm

You always say the right things, mac....
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
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby mac » Sat Jun 23, 2007 9:28 pm

Angie, blush blush, thank ya kindly m'am! you made my night!

And I meant to add to my other post that I am SO glad you have decided to move ahead with the fusion!! You have so many years ahead with those beautiful girls and getting that surgery and a few months recovery will be a small price to pay for having more strength and less pain during all those wonderful years ahead!

lvya!
mac
mac
 

Postby angie7 » Sat Jun 23, 2007 9:35 pm

mac wrote:And I meant to add to my other post that I am SO glad you have decided to move ahead with the fusion!! You have so many years ahead with those beautiful girls and getting that surgery and a few months recovery will be a small price to pay for having more strength and less pain during all those wonderful years ahead!

lvya!
mac


And that is exactly why I decided to do it. It isnt so much for me but for my kids. I want to be the best mom I can be so if this *might* help, it is worth it!!!
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
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby mac » Sat Jun 23, 2007 9:41 pm

Amen to that, Angie!! You know, looking outside of ourselves and to our families is often the way we come to make the right decisions. When Dr. B told me to never ride again, that it would kill me, I had a bit of hard thinking to do. I had ridden daily for 40 years and it was my life's passion and obsession. But then I looked at my husband and son and said, "I can't be that selfish. I can't do that to them!"

Maybe this is a good wake up call for all of us, to look to our loved ones and how they are affected and see how that influences our decisions.

I say often, "I don't want a fusion or TC surgery! Whah!!" and my dh always says, "You HAVE to have it!" I figure the things unsaid are, "This is hard for me too and I want to have less of "this!"

loveya
mac
 

Postby angie7 » Sat Jun 23, 2007 9:50 pm

It definately makes you view the world differently when we are faced with these problems...I know I shaped up alot 3 years ago after I first heard "syrinx"

Sorry, we didnt mean to hi-jack your thread Tiffany....
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
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby mamashu5boys » Tue Jul 03, 2007 9:13 pm

mac wrote:
How do you feel about Keegan's surgeon? One thing we've found to be true is that most of us will have to travel, sometimes great distances, to get to that full time specialist with the deep interest in CM/SM. But it is completely worth it. You would get a plan for surgeries etc and feel confident. So, that's my thought about your post.

Hello MAC,
Thank you for answering. I felt really good about the neurosurgeon that did Keegan's tethered cord release and first helped me to decide which surgery path to take. He was the head of pediatric neurosurgery at the children's hospital in Stanford CA. He has left on a two year sabbatical so now I will be meeting his replacement on July 16th, I've heard good things about him but I don't really know what he's like yet.
I wish you the best for your health situation. Thank you for your kind and helpful advice!
Tiffany
mamashu5boys
 


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 7 guests

cron