chiari & potty training

[mathonn]

Hi, I have a 3 yr old girl with Chiari. She had surgery just over a yr ago. Her herniation went from 10mm before surgery to 20 mm 6 months after surgery. For now the doctors are just going to monitor her. I was wonder if anyone with a chiari child had trouble with potty training. She doesnt seem to have the sensation that she has to go. Since she is 3 the doctors are not to concerned with it yet and said chiari doesnt effect bladder or bowel control. Has anyone had issue with bladder control and chiari? Thanks.

[n40066]

if you have another ped cm specialist anywhere near you, why don't you call them and see if they are willing to look ar her films?  it never hurts to have a second opinion and i'm sure it would help you sleep better at night.  just a thought

[selmaS]

OIC..well it could be the syrinx causing the bladder issues too....TC does not always show on MRI's but can be detected by looking at bowel and bladder function with a urodynamics test, and the length of the brain stem,  where the conus ends, and symptoms.......

I understand ur hesitation at listening to this dr...is goes against everything I have heard or read regarding chiari....

Chiari symptoms can be triggered by a fall, or even a bumpy car ride,even straining too much with a BM can trigger chiari symptoms.

We do have a list in the Health Pages as to what should be avoided, and it goes for b4 and after surgery.-http://www.medhelp.org/health_pages/Neurological-Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

Brain slump can cause more issues most times, and is an indication of a redo being needed...I am confused by ur DD's condition and symptoms at this time too!!


"selma"

[mathonn]

Hannah was checked for tethered cord just before her surgery and they didnt find anything.  We live in alberta canada and her doctor was Dr Pugh at the Stollery Childrens Hospital. He has had a lot of experience with Chiari. That being said he has never seen a herniation slump down so soon after surgery or so much. The strange thing is her symptoms are much better since surgery.

Hannah had the decompression surgery, they did not open her dura. She has a tiny syrinx that was there before her surgery and has not changed. Because her symptoms are somewhat better he just wants to do MRI's every 6 months to monitor things. He also told us we didnt need to limit her activities which I dont really feel good about. He said falling and hitting the back of her head shouldnt cause any problems.....

which is strange because they seem to think her Chiari was triggered by a fall down some stairs and hitting the back of her head. Her original symptoms seem to come on overnight....and she had surgery 3 weeks later. I wish we had more time to research but she went from a happy 2 yr old to screaming for hrs and within a few weeks was having trouble walking...the pain she was in was the worst thing.

What have your doctors said about watching activities???

[n40066]

hi mathonn!
welcome to our chiari family!  so very sorry to hear about your baby!!!  but i agree with selma.  tethered cord is notorious for causing bladder issues.  if her ns does not specialize in chiari, he/she may not know to look for that.  it's quite unusual for a herniation to double in size 6 months after surgery!  do you know how they did her surgery?  what they did, i mean?  also, did they check to see if she had a syrinx anywhere in her spine?

[selmaS]

Hi and welcome to the chiari forum.

Bladder issues can be a chiari related issue...more over it could be a tethered cord issue...has she been checked for it?

I used to have this problem as well...never felt the urge to go, but, I would get pain up and down my spine....I was told it  is bcuz I also have TC and it can do this...I did have the feeling restored, but, if I hold it too long I get hot.....and again, I am told it is a result of TC.

May I ask, were her drs chiari specialists?

"selma"