Re: Avery has a syrinx

[Guest guest]

,

When she had the MRI did they include her brain as well? This is important

because normally with a syrinx there is another underlying condition that is

causing the syrinx. My son has a Chiari Malformation wich normally goes hand in

hand with syrinx's but we caught my son's Chiari early enough that it did not

cause a syrinx to form. If you go to www.asap.org you will find a lot of

information on syrinx's and the causes that go with them. I will be hoping tht

her's is small and will need to just be monitored.

I know that Heidi's son Bexon also has a small syrinx that they are

monitoring and am sure she will also chime in. Please let me know if I can

assist you with anything further.

Rochelle mom to Devyn 4 3/4yrs Infantile Scoliosis, Chiari 1

>

> Hi everyone!

> Avery got her first cast a week ago, and I'm happy to report that it went so

well! Thank you so much for writing about the experiences with your kids, it

helped so much to have an idea of what was going to happen.

> For the moms who are facing the first cast- your child will amaze you! Avery

did really well, hardly cried at all when she was waking up. She also ate

normally from the very first feeding (she is breast fed). She was crawling two

days later, and although she's still a bit wobbly she's gotten a lot of her

mobility back. She's sitting by herself, and pulling herself up to stand again.

I was so worried about the hospital experience, but it was so much easier than I

expected. The nurses were all so nice, and really helpful. The doctor got her

curve down to 5 degrees (from 25, RVAD of 8)

>

> only bad news is the MRI showed Avery has a small syrinx. now we're not sure

if the syrinx is causing the scoliosis, which from my understanding means it

will be a resistant curve. The doctor said at this point we just don't know,

we'll just have to wait and see what happens. does anyone have a very small

syrinx and a resistant curve? If it is resistant, when will we know? Are there

any other medical conditions that we should now watch for? We will be seeing a

neurosurgeon in the next few weeks. Are there important questions that we

should have for him? The orthopedist thought he will say, " wait a year and then

repeat the MRI " . Is the " wait and see " approach appropriate?

>

> thanks everyone, I'm so grateful I can ask all of you questions!!

>

>

> Mommy to Avery (11 months, in 1st cast, at 5 degrees down from 25)

>

[Guest guest]

Hi ,

Congratulations on the first cast! 5 degrees is wonderful! My son has a small syrinx. It has not grown, we had our year follow up X-ray already. My understanding is that it may never grow, but you do have to watch it- pretty much for life. It can grow even in adulthood. Our last ortho before Shriners said he has never seen one grow, and he's seen a hundred of them. I would watch for symptoms when our children are older- numbness, tingling in hands, feet, etc...I'll ask my son when he is older and follow up with MRIs.

Ours is too small to operate on, which is just fine by me. They can't really say if it caused the scoli or is an incidental finding. I'm sure it is related. My son got stuck in the two casts in the middle, we are on 7 and numbers 5 and 6 went slightly backwards/stayed the same number, approximately. The last one we got about 5 degrees better. We started at 62. I think we turned a corner and we will stay with it for certain, I truly feel a syrinx will not prevent more correction for our son. Every child is unique, but I think you have every reason to expect great results, time is on your side. Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: lisabelle79 <wilson.lisa22@...>infantile scoliosis treatment Sent: Fri, July 23, 2010 12:22:31 PMSubject: Avery has a syrinx

Hi everyone!Avery got her first cast a week ago, and I'm happy to report that it went so well! Thank you so much for writing about the experiences with your kids, it helped so much to have an idea of what was going to happen.For the moms who are facing the first cast- your child will amaze you! Avery did really well, hardly cried at all when she was waking up. She also ate normally from the very first feeding (she is breast fed). She was crawling two days later, and although she's still a bit wobbly she's gotten a lot of her mobility back. She's sitting by herself, and pulling herself up to stand again. I was so worried about the hospital experience, but it was so much easier than I expected. The nurses were all so nice, and really helpful. The doctor got her curve down to 5 degrees (from 25, RVAD of 8)only bad news is the MRI showed Avery has a small syrinx. now we're not sure if the syrinx is causing the scoliosis, which from my

understanding means it will be a resistant curve. The doctor said at this point we just don't know, we'll just have to wait and see what happens. does anyone have a very small syrinx and a resistant curve? If it is resistant, when will we know? Are there any other medical conditions that we should now watch for? We will be seeing a neurosurgeon in the next few weeks. Are there important questions that we should have for him? The orthopedist thought he will say, "wait a year and then repeat the MRI". Is the "wait and see" approach appropriate?thanks everyone, I'm so grateful I can ask all of you questions!!Mommy to Avery (11 months, in 1st cast, at 5 degrees down from 25)

[Guest guest]

Hi ,

Our son, too, has a Syrinx. It was found during a MRI at an early age. We are also watching it to see if it grows. Our Dr orders a MRI every couple years to keep up on it. His is also to small to operate on, but possibly could grow at some point.

We have had wonderful results with casting, 80 degrees down to low 20's in his last cast (9 total). We are now onto bracing and still getting a little correction, down to 16 in his 4th brace. Don't get me wrong, the only reason we are still able to get correction on bracing I'm sure is because of the casting first.

Best of luck to you both.

Noah 5yrs 3weeks, 9 casts 4 braces, 80 degrees to 16 in brace from SLC

From: NIck Guthe <nickguthe@...>Subject: Re: Avery has a syrinxinfantile scoliosis treatment Date: Friday, July 23, 2010, 6:09 PM

Hi ,

Congratulations on the first cast! 5 degrees is wonderful! My son has a small syrinx. It has not grown, we had our year follow up X-ray already. My understanding is that it may never grow, but you do have to watch it- pretty much for life. It can grow even in adulthood. Our last ortho before Shriners said he has never seen one grow, and he's seen a hundred of them. I would watch for symptoms when our children are older- numbness, tingling in hands, feet, etc...I'll ask my son when he is older and follow up with MRIs.

Ours is too small to operate on, which is just fine by me. They can't really say if it caused the scoli or is an incidental finding. I'm sure it is related. My son got stuck in the two casts in the middle, we are on 7 and numbers 5 and 6 went slightly backwards/stayed the same number, approximately. The last one we got about 5 degrees better. We started at 62. I think we turned a corner and we will stay with it for certain, I truly feel a syrinx will not prevent more correction for our son. Every child is unique, but I think you have every reason to expect great results, time is on your side. Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: lisabelle79 <wilson.lisa22@ gmail.com>infantile scoliosis treatment @groups. comSent: Fri, July 23, 2010 12:22:31 PMSubject: [infantile_scoliosi s] Avery has a syrinx

Hi everyone!Avery got her first cast a week ago, and I'm happy to report that it went so well! Thank you so much for writing about the experiences with your kids, it helped so much to have an idea of what was going to happen.For the moms who are facing the first cast- your child will amaze you! Avery did really well, hardly cried at all when she was waking up. She also ate normally from the very first feeding (she is breast fed). She was crawling two days later, and although she's still a bit wobbly she's gotten a lot of her mobility back. She's sitting by herself, and pulling herself up to stand again. I was so worried about the hospital experience, but it was so much easier than I expected. The nurses were all so nice, and really helpful. The doctor got her curve down to 5 degrees (from 25, RVAD of 8)only bad news is the MRI showed Avery has a small syrinx. now we're not sure if the syrinx is causing the scoliosis, which from my

understanding means it will be a resistant curve. The doctor said at this point we just don't know, we'll just have to wait and see what happens. does anyone have a very small syrinx and a resistant curve? If it is resistant, when will we know? Are there any other medical conditions that we should now watch for? We will be seeing a neurosurgeon in the next few weeks. Are there important questions that we should have for him? The orthopedist thought he will say, "wait a year and then repeat the MRI". Is the "wait and see" approach appropriate?thanks everyone, I'm so grateful I can ask all of you questions!!Mommy to Avery (11 months, in 1st cast, at 5 degrees down from 25)