3 year old with syrinx

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

Moderator: pmaxwell

Postby mamashu5boys » Thu Jul 12, 2007 4:16 pm

Hello Angie,
I'm sorry I only get on twin talk once or twice a month. I have been way to busy recently to even check my email much. my husband and I are trying to sell our empty lot because after a year and a half we still cant get permits to build. We also started looking at houses. In our neighbor hood a small old junky house coasts at least 4-5k Its ridiculous! We haven't had much luck finding anything we can afford.

We also spent all yesterday at a funeral for my Nephew. He was 22 and lost his battle with leukemia after 14 months of kemo. It was very sad, but good that so much of the family could drive or fly in and gather together.

Keegan is doing great, he sees his neurosurgeon on Monday, we suspect we will be told to operate again to drain the syrinx. I'll be sure to post and let you know what we find out.

How are you and your girls enjoying the summer? Today we lit a fire in the wood stove to take the chill off the air. LOL
Thanks for being there,
Tiffany
mamashu5boys
 

Postby angie7 » Thu Jul 12, 2007 9:43 pm

Glad to hear everything is alright and I understand about being busy! I was just starting to worry about you guys.

Yes, please let me know about Keegan's apt on Monday, I will be thinking of him, well he is always in my thoughts so that one's a give-me :wink: ...

We are enjoying it as much as we can. It has been so hot and humid here that we were just able to get out of the house yesterday, the first time in a week! We went shopping today and got some more toys (like they need some more) and a new diaper bag. This is the FIRST one that I have been able to pick out on my own. I got 6 from my baby shower and didnt see the point in buying anymore but I just couldnt resist this one lol! and then we went for a walk around the neighborhood and had an orange push up afterwards. Just the dog days of summer lol!

So sorry to hear about your nephew. It is so hard losing someone so young. My cousin was killed last year by a horrible lawnmower accident at 21.
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 angie7 » Mon Jul 16, 2007 8:07 am

Just wanted to send good thoughts for Keegan today. Hopefully you will get good news today! Everything is crossed for him!
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 angie7 » Tue Jul 17, 2007 12:21 pm

So how did the apt go?
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 17, 2007 1:26 pm

Hello Angie and Everyone,
Thank you for thinking of us yesterday, with the long drive and the hospital running a couple hours late it was a long day, but not terrible.

Keegan saw the neurosurgeon yesterday. We met Dr. Edwards for the first time, our original Nero is on a sabbatical for research. I got what I think is good news…No surgery to drain his syrinx at this time! That’s what I wanted to hear, I’m just left feeling a little unsure because it’s not what I had expected. Our Original Doctor felt Keegan was having some mild nerve damage in his feet and draining the syrinx would be necessary. Dr Edwards feels if Keegan has any damage it would be in the 10% range and has a higher risk of more damage if he operates.
Dr. Edwards was very personable and friendly and made cute comments; I just don’t totally feel that I got any scientific answers. When I asked about how much of Keegan’s spinal cord was being blocked by his 9mm syrinx, the doctor brushed it off and said it’s not a concern. The things that matter are that the syrinx is not getting any bigger and is not causing trouble. I also asked if draining the syrinx could be combined with Keegan’s future spine surgeries, apparently not since orthos want to avoid opening up the spinal cord (I guess I could have figured that one out, duh).
Keegan is doing great and can run jump and play, even get his feet tickled, so I’m ultimately happy that he will not need a surgery this summer. That of course is on the condition that his next dreaded VCUG bladder test in normal. An unmoral test is the only reason Dr. Edwards might change his mind about draining Keegan’s syrinx this year.

Tiffany
Mama to 5 beautiful redheaded boys
http://babyhomepages.net/5smurfyboys/index.php
Rory age 14, Evin age 10, Brandel age 6, identical twins Keegan and Conley are age 3. J
Keegan has progressive congenital scoliosis at 60ish° a hemi vert at T-5, two fused ribs, several vertebrae fusions, a rib hump measuring at 14+, a solatary left 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, that we hope will clear up on its own after his tethered cord release surgery on Oct. 18, 2006
mamashu5boys
 

Postby angie7 » Tue Jul 17, 2007 8:34 pm

I am happy to hear that Keegan wont need another surgery!!! But at the same time, I kinda feel like you do. It doesnt sound like this doctor is concerned with his syrinx (or knows much about it), but your other doctor was. 9mm is a large syrinx and I would be concerned b/c it doesnt have much more room to grow without damaging his spinal cord, kwim?

Have you considering seeing a SM specialist? Honestly, with the many doctors I have seen (and trust me it has been many) only one was concerned about nerve damage and that is my SM specialist, Dr Oro. Maybe just send a specialist such as Dr Frim in Chicago a copy of his MRI films and see what he says....They are use to people being out of state and many will review them for free and let you know what they think over the phone, maybe this will work for you. That way you dont have to pack up 5 kids to go to a doctor so far away for a consult, yk?

SM is rare and many doctors dont believe they cause problems, when they do...Just consider sending his films to Dr Frim just to see what an expert, someone who specializes in syrinxes says. Maybe he will give you the same news and it will ease your mind a little or he might say that surgery is needed to prevent nerve damage in the future. Either way, I dont see how you could lose...
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

Previous

Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 6 guests