I have 2 daughters diagnosed with Syringmyelia....

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

Moderator: pmaxwell

I have 2 daughters diagnosed with Syringmyelia....

Postby lhodnett73 » Tue Aug 07, 2007 7:38 pm

Hi all, I just found this site and am hoping for some information. I have 2 daughters diagnosed with Syringmyelia. Both of them have no other issues noted ( They are both in the thorasic spine). They do not have Chiari's or tethered cords. They went for their annual MRI today. My 5 year old's is stable but they said my 8 year old daughter's syrinx has grown. She is not showing any symtoms with the growth. He gait is fine and balance is ok. The doctor wants to do an X-Ray as well and follow up in 6 months. I have a lot of questions I should have asked the neurosurgeon today but was caught off guard and in the office with 2 kids I couldn't focus. I am planning on calling the doctors office and was hoping for some ideas of what questions I should be asking. I'm not even sure what the implications of growth are and the treatment options out there. Any assistance I could get would be greatly appreciated.
Thank You!
Lisa
lhodnett73
 
Posts: 11
Joined: Tue Aug 07, 2007 7:28 pm
Location: NJ

Postby angie7 » Tue Aug 07, 2007 8:55 pm

First I want to say that I am sorry that both of your daughters have SM. That must be so heartbreaking as a parent <hugs>

As far as questions to ask your current doc. 1 would be "why does my child have this" SM is rare for anyone to have it, but only 1% is idiopathic (meaning no cause) so it would be extremely unlikely that both your dd's have idiopathic SM. If this is a local NS (which it sounds like it is) your dd's may have ACM but it isnt the usual 5mm herniation and therefore a local doc, will not dx it. There also are many other reasons why SM can happen, tumors, cysts, tethered cord (TCS), scolosis, ACM (being the main cause), etc. TCS is hard to find in most patients and a specialist is needed to find it.

Have you looked about going to a specialist or at least sending your dds' films to one? Most will look at them for free and call with what they find and you can determine if a trip is needed. Dr Frim is in Chicago, Dr Menezes in Iowa, Dr Oro in Colorado and TCI in NY. These are just a few. On the home page of this site is a "medical advisory board" that lists many specialist throughout the US. This would be my next step if I were you. SM is a serious disease and without proper medical help, can hurt you in many ways. A specialist is truly the best way to go when dealing with this.

As far as surgery options, well it really depends on finding a specialist and having their opinion. If it is TCS, then surgery is needed to de-tether the cord. If it is ACM then a decompression may be warranted to decompress the brain and allow csf flow (more tests before surgery is a definate though) and if just SM, depending on the size (width) and symptoms, shunting may be needed.

I do hope that you seek out a specialist. They are the only true experts out there to help us. I see Dr Oro in Colorado, I live in Indiana. So I have a ways to go to see him and it is worth every bit of 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

Hi

Postby Sara » Thu Aug 09, 2007 7:21 am

Hi and welcome. Please request a free info packet from www.asap.org if you haven't already. What state do you live in and who did you see? With idiopathic SM- a syrinx of unknown cause, seeing someone who has a special interest in SM is vitally important. Tell us what state you are in and maybe we can recommend some doctors.
Sara
Holly's mom
Sara
Site Admin
 
Posts: 572
Joined: Wed May 16, 2007 1:14 pm

re: mom of 2 little girls with syringomyelia's

Postby lhodnett73 » Fri Aug 10, 2007 7:13 pm

Hi Thanks for the feedback. We live in Southern New Jersey. Currently both of my girls are seeing Dr. Campbell at DuPont Hospital (delaware). We started at CHOP (Philafdelphia) but the doctor missed the syrinx and they messed up my older daughter's MRI, causing it to have to be repeated. I actually requested the report for my records and when I read it I freaked out. The doctor who ordered the first MRI did not even tell us it was there. I had to go to my pediatricians office for them to explain it to me....
Lisa
Mom to Kelli and Ryan
lhodnett73
 
Posts: 11
Joined: Tue Aug 07, 2007 7:28 pm
Location: NJ

Re: re: mom of 2 little girls with syringomyelia's

Postby angie7 » Fri Aug 10, 2007 8:16 pm

lhodnett73 wrote: I actually requested the report for my records and when I read it I freaked out. The doctor who ordered the first MRI did not even tell us it was there. I had to go to my pediatricians office for them to explain it to me....
Lisa
Mom to Kelli and Ryan


Funny you mention this. This one of my pet peeves when dealing with doctors. I was only told that I had a syrinx after a NL read my MRI's. I saw a NS in my hometown who only mentioned the syrinx as well. After I found a specialist and had to request my MRI's and reports did I find out about the cervical kyphosis, DDD, and ACM. It's amazing what they dont tell you. That is why I tell people to always get copies of their MRI's if they *truly* want to know what is going on with them...
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


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 11 guests

cron