bladder issues and syrinx still present

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

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bladder issues and syrinx still present

Postby Lipper5 » Wed Jan 06, 2010 1:47 pm

My 3 1/2 year old son had decompression surgery 2 years ago in February. His syrinx has not changed but continued to have follow up MRI's every six months until something changes or he gets older. He has been having some rather odd bathroom habbits and now started to have occassional accidents. He has been seen by a Urologist because he has a lot of frequency "dancing around potty dancing" and he would go several times and nothing would happen. They think he has a spastic bladder and is on medicine for this. It does help but some days he doesnt go all day and by end of day he urinates every 20 min maybe 4 times in a row. Then other days he goes throughout the day many times. He has been having some soaked underwear and some just dribbles. The Dr said his scan shows no change and wants to wait 5 weeks to see if they seem to get better. He advised that sometimes with growth change things can be disturbed in there. He wants to really not have to shunt the syrinx if it is not necessary. But my understanding is that this is one sign of the syrinx problem and damage is permanent once it starts. I really would love another opinion out there. What if any does anyone have?
I could contact the original DR we saw 2 years ago that wanted to shunt it and not do decompression because he felt the syrinx was serious. But I feel bad asking an opinion of a DR we didnt goto to begin with. Sorry for the long drawn out story!

Krista

PS- also have another son dx with Chiari Malformation which he wants to wait 5 weeks to see if his headaches (needle stuck in head pain) goes away. Comes and goes and sometimes head hurts so bad he crys and other times it lasts maybe 10 minutes!
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Re: bladder issues and syrinx still present

Postby Becky1219 » Fri Jan 08, 2010 9:30 pm

My 2 1/2 year old son has SM and CM1. He also had a tethered spinal cord. He has not had decompression yet since we decided to start with TC surgery to see if it would help the syrinx and in turn his neurogenic bladder. My understanding is that the damage is not necessarily permanent, but a neurogenic bladder is a symptom of SM. Has he had urodynamics testing to know exactly what is happening with his bladder? I would get that done first, so either way at least you have a baseline. Jack's 3 month post-op urodynamics was not any better than prior to surgery. Both his nsg and urologist agreed that it could take several months to see improvement. He has another urodynamics test and MRI in March and if things aren't better at that point, decompression will be the next step. We did try Ditropan for Jack's bladder, but he had terrible side-effects and we decided since he isn't 3 yet, we could hold off a little longer on potty training and we stopped the med. A second opinion is a good idea, especially if you just aren't sure what to do.
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
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Re: bladder issues and syrinx still present

Postby Lipper5 » Fri Jan 08, 2010 10:04 pm

Thank you for responding.
They wont do a urodynamics test on him. They said he was to young and would not work for him. He had to sit still. I asked if he could have it done during his MRI since he would be under and they said no.
What kind of side effects did your son have on Ditropan? Aiden has severe dry skin normally and this medicine is drying him out like crazy. His feet and hands look as though he is an 80 year old man. They crack and split and bleed. He cries when we put lotion on him. He does get cotton mouth and they are thinking about switching to something different.
He also has a small opening to his private area so they are doing surgery in February to cut it to make it bigger. They think that will help him in not having to push it out. They never mentioned he had Neurgenic bladder. They just said spastic bladder. Not sure if both are same or similar. The decompression surgery is questionable. I mean it did stop the syrinx so far from growing any bigger. But it will be 2 years in February and nothing really went away. I just do not know if this is just a coincidence or not with the sm and bladder issues. And it seems as though neither Dr can say if they are related in any way. I really do not know who to call or what questions to ask. There are no local pediatric urologist and I didnt care for CHOP when we had to meet with the Neurosurgeon there. Well I hope things get better for both of us.
One more thing...how did you know that your 2 1/2 year old was having bladder problems? Symptoms? Thanks again..and sorry for the long reply!
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Re: bladder issues and syrinx still present

Postby Becky1219 » Sat Jan 09, 2010 9:55 pm

My son is seen at our local children's hospital and they routinely do urodynamics on very young kids. While Jack is not happy about it, they have a tv that he can watch movies on, the x-ray machine has stickers all over it, and I bring books and toys to help keep him still. Usually the worst part is when they insert the catheter, but he quickly calms down and because his pressure builds so quickly the test does not last terribly long. I did not know he was having bladder problems as he had just turned 2 when he was first tested. Urodynamics is a routine test that Jack's nsg orders for any kid with a tethered spinal cord and/or syrinx. She likes to have it done prior to surgery for either of them. So once we knew we were looking at some type of surgery, we did the test and that is when we found out. The CM, SM, and all the other brain/spine issues were found after we requested an MRI because Jack was having motor planning difficulties and wasn't catching up developmentally as quickly as his therapists thought he should for a 30 weeker. Spastic is usually neurogenic, but there are other reasons for spastic bladders as well.

Jack was only on Ditropan for about 2 days. His worst symptoms were constipation and this weird and scary eye twitch/blink/roll thing he would do. His mouth was also really dry, so I'm sure if he had stayed on much longer his skin would be like Aiden's.

Decompression is a big question for us too. Jack has swallowing difficulty at times that I think is also related to the chiari, but his nsg wants to blame it on his esophagus surgeries and fact that he is still learning to eat orally. He also has pain at the base of his skull when he is awake for one of his g-tube feedings run on the pump. Seems to be pressure related to me, but again the nsg doesn't agree. Jack also has hydrocephalus that is really mild and we aren't even sure if it is chiari related or if it just appears to be hydrocephalus since he has decreased white matter something needs to take up that space, so why not CSF. This is an extremely difficult decision. While we don't want to put him through another major surgery, we also don't want any of his issues to become worse because we didn't do something to stop their progression. We just pray God leads us down the best path for Jack.

I hope you are also lead in the best direction for Aiden and that things improve for him as well!
Sorry I'm long winded too!
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
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