3 year old with syrinx

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

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3 year old with syrinx

Postby mamashu5boys » Thu Jun 21, 2007 12:24 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. (this sight is making me take the link off to post, I'll try adding it later?)
Tiffany
Mama to 5 beautiful redheaded boys


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 mamashu5boys » Thu Jun 21, 2007 12:27 pm

Here's the link for photos of Keegan including an MRI image

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

Funny that I couldn't post it in the first place
Thanks,
Tiffany
mamashu5boys
 

Postby angie7 » Thu Jun 21, 2007 12:59 pm

Welcome Tiffany and Keegan...and your welcome for the invite here. You will find alot of helpful advice..

I tried your link and it says it cant be found???

Just curious but how big is his syrinx, width and length?
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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site

Postby razzle51 » Thu Jun 21, 2007 1:14 pm

Angie just type in that box 5smurfyboys

the box that says this
Search for a BabyHomePages.net Website:

just (5smurfyboys) nothing else
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 mamashu5boys » Thu Jun 21, 2007 1:33 pm

Hi Razzel and Angie,
I'm sorry my link isn't working properly here, but thanks for working on it! I've had this sight for a couple of years and it usually goes straight to my home page. It still works fine when I tried the link from a post on a different sight. (hummm?) I'm posting it again in case that helps.


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

On Keegan's first MRI report (when he was 1 year old) it said his syrinx is at T11-L1 and with a maximum AP diameter of 9mm.
I don't really know what that means but the neurosurgeon said that was pretty big for a kid his size and age.

Thanks,
Tiffany
mamashu5boys
 

hello

Postby razzle51 » Thu Jun 21, 2007 1:59 pm

Tiffany I sent you a PM . Private message . your family is so lovely .
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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Joined: Wed May 16, 2007 2:25 pm

Postby SMLady » Thu Jun 21, 2007 2:21 pm

HI, and welcome to the site. You're boys are all so handsome!

I have scoliosis, as well as SM, and I wish my parents would have gotten me fixed when I was young. I do a good job of hiding it, but I have the feeling I wouldn't have so many problems if this would have been fixed 30 years ago when they first found it. But I wasn't as lucky as your son. My parents thought the doctor was just making it up, so I'm still curved.

You are all in my prayers. Take Care.

Glenna
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Postby angie7 » Thu Jun 21, 2007 8:37 pm

Dont mean to scare you but wow, that is very large for an adult let alone a child. My syrinx is 2mm. My NL said that you can think of it like this. Your spinal cord is 10mm wide, so my 2mm diameter syrinx takes up 20% of my spine. In Keegan, it would take up to 90% of his spinal cord. They say the width is worse then the length. I would almost bet that this is a cause for a great many of his lower extremity problems. Have you thought about seeing a SM specialist? They might be able to shed more light on this then your current doctor. Dont get me wrong, there are some wonderful doctors in this world but for many people with SM, most doctors just dont know much about it. It wouldnt hurt to try.

Like Glenna said, my parents knew about my scolosis when I was 3 months old. They tried a conservative approach to wearing a lift in my shoe and when that didnt correct it, they wanted to do a some kind of surgery (sorry I dont remember) where I would have a metal rod inserted all the way down my back and have to wear a back brace. My parents opted not to do this and left it as is. Unfornuately with my many other problems, no one knows exactly what causes what.

ETA: your link is working now.
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 angie7 » Thu Jun 21, 2007 10:05 pm

I just read all of Keegan's story and you all have been through so much. Like I have said many times before, you all are a very strong family and he is one special, beautiful little boy.
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 9:28 pm

SMLady wrote:HI, and welcome to the site. You're boys are all so handsome!

I have scoliosis, as well as SM, and I wish my parents would have gotten me fixed when I was young. I do a good job of hiding it, but I have the feeling I wouldn't have so many problems if this would have been fixed 30 years ago when they first found it. But I wasn't as lucky as your son. My parents thought the doctor was just making it up, so I'm still curved.

You are all in my prayers. Take Care.

Glenna


Hello Glenna,
It helps for me to hear from adults who have and have not had there scoli treated. Its very difficult as a parent to choose a dangerous spine surgery for a young child. I have know way of really knowing if the out come will be worth it, and Keegan is way to young to help make the choice. I can only hope that one day he thinks I did the right thing.
Our orthopedist said that even 10 years ago there would be little help for Keegan with out a high risk of paralyses. Perhaps your parents made the best choice they could at the time. I'm glad to hear you are doing well, I'm sorry that things did not work out better for you.
Best wishes and Thank you,
Tiffany
mamashu5boys
 

Re: hello

Postby mamashu5boys » Tue Jul 03, 2007 9:46 pm

razzle51 wrote:Tiffany I sent you a PM . Private message . your family is so lovely .

Hello Razzel,
Thank you for sharing your extensive research on doctors, I am very grateful!
We saw Doctor Huhn at Lucile packers children's hospital in Stanford CA for Keegan's Tethered cord release. He left for a two year sabbatical, on July 16th we will meet his replacement Dr. Edwards. If anyone has heard anything about either of them I would be interested to know.

Thanks and best wishes,
Tiffany
mamashu5boys
 

Postby mamashu5boys » Tue Jul 03, 2007 9:54 pm

angie7 wrote:I just read all of Keegan's story and you all have been through so much. Like I have said many times before, you all are a very strong family and he is one special, beautiful little boy.


Thanks for the compliments! He is beautiful, I sometimes think all this beauty was wasted on my boys, they want to be rugged young men. LOL

I'm glad contacted me when you did, I also just read your latest PM on twintalk. I hope i can some how return all the kindness and comfort you have given me!
Thanks,
Tiffany
mamashu5boys
 

Postby lovemyblessings » Tue Jul 03, 2007 10:38 pm

I just had to say, "Hi!" because my son named Keegan is the reason I am here, too! My Keegan will be 5 in a few days and has Chiari I and pseudotumor cerebri. You will be in my thoughts and prayers!

~Dawn~
Blessed wife to Mike and Mommy to John (7), Marah-Lynn (6), Keegan (almost 5), Luke (3), Quintin (22 months), and Ruth (7.5 months)
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other west coast drs

Postby razzle51 » Wed Jul 04, 2007 10:14 am

West Coast Neurosurgeons Experienced With Chiari Malformation
After reading voluminous web sites about CM/SM and seeing repeated mention of the names Dr. Milhorat and Dr. Bolgnese in New York, we started wondering if New York had a lock on Chiari surgery expertise. That’s simply not the case. I am sure that Drs. M & B are great at what they do, but so are many other neurosurgeons across the country.

Here is some general info on West Coast doctors that deal with Chiari Malformation / Syringomyelia (CM/SM) on a regular basis. I’ll add more information as time allows and as I get new information.

Dr. Leslie D. Cahan
Kaiser Permanente, Los Angeles (Sunset)
Dr. Cahan does all of Kaiser’s pediatric Chiari Malformation surgeries. We have met him personally and we are currently scheduled with him for Jaden’s surgery in mid April, but we are hoping to move that appointment up. Obviously, we feel very confident in Dr. Cahan’s expertise in decompression surgeries. His skill as a surgeon was verified by a non-Kaiser doctor we consulted for a second opinion (Dr. McComb, below).

(Update: We used Dr. Cahan for Jaden’s surgery and he did an AWESOME job, by the grace of God!)

Dr. Soohoo Choi
Kaiser Permanente, Anaheim (Lakeview)
We were referred to Dr. Choi by Dr. Cahan to get an intra-Kaiser second opinion. We met him, and although we would probably feel comfortable with him doing the surgery, he said that the Sunset facility (where Dr. Cahan practices) has a pediatric ICU, while the Lakeview facility does not. He also told us that he does more adults, while Dr. Cahan generally handles pediatric patients. For these reasons, we have scheduled the surgery with Dr. Cahan. We later found out that Dr. McComb (below) trained Dr. Choi and has a lot of confidence in his abilities.

Dr. J. Gordon McComb
Hollywood Presbyterian Medical Center, Los Angeles
Children’s Hospital, Los Angeles
We saw Dr. McComb to get a second opinion outside of the Kaiser system. He was extremely thorough in explaining things us and was very knowledgeable about Chiari Malformation and its unique symptoms. For non-Kaiser patients, I would highly recommend a consultation with him.

Dr. Ulrich Batzdorf
UCLA Neurosurgery
This recommendation came through a CM/SM patient who called me with a good report on Dr. Batzdorf. She also recommended Dr. Lazareff for pedes patients.

Dr. Jorge A. Lazareff
UCLA Neurosuergy
I received positive feedback on Dr. Lazareff for his treatment of pedes Chiari cases.

Dr. Richard Ellenbogen
University of Washington Spine Center
I recieved positive feedback on Dr. Ellenbogen for those nearest to the Seattle area.
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 » Wed Jul 11, 2007 8:09 pm

Hey Tiffany! I have pm you twice on the twin board and havent gotten a response. Everything alright with you guys and Keegan?
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

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