9 Y.O. w/ SM, bladder issues, weakness, seeing neurosurgeon

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

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9 Y.O. w/ SM, bladder issues, weakness, seeing neurosurgeon

Postby mamakitty422 » Tue Nov 27, 2007 9:58 pm

First of all, hello. My name is kitty and my son, just turned 9 last week, was diagnosed with a spinal syrinx (after I INSISTED the doc find out why he had leg pain and an awkward gate) at about 5, only after an MRI. He has been thru more tests than I can keep track of. He does not have Chiari. I am thankful to find this website, I just happened upon the word SYRINGOMYELIA on an MRI report I was reviewing. Up until now they have simply called it a syrinx and just said "its not bigger, we can ingnore it" his syrinx runs c6 to the conus at the lumbar, is largest at T6-8 where it is 5mm (used to be 3mm). In the past 6 months he has a new symptom, he has been having urinary incontinence. We saw the pediatric urologist last month (with multiple tests) and just now today had a repeat urodynamics test (measures urinary pressure... mighty awful test for the patient). This test was normal 2 years ago and now it is a mess. His bladder is spastic, overactive, small and leaking. We are scheduled to see a ped neuro surgeon (new one!) next week. What is the most common treatment for SM? Like i said earlier... No one has ever really told me this diagnosis... just told me "syrinx" and that he might even outgrow it. I am sooooo frustrated. We have been told mild cerebral palsy, developmental dyspraxia, syrinx, etc. Are you all dealing with the same thing? What is the prognosis for a child with SM? I have read everything from bladder to complete disability and death by age 47... to say the least i am freaking out a little. ok, i will quite going on (feeling a bit neurotic tonight LOL) so you all can impart your wisdom. Thank you in advance for any insight, advice or comments you may have. Kitty :roll:
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Postby pattip448 » Tue Nov 27, 2007 10:38 pm

Kitty , First I would like to say welcome to the board and so sorry to here your young fella is having such a difficult time with his health. It is so hard to be parent with a chronically sick child.

My son does not have a syrinx but has CM and EDS and a few similar symptoms to your son . Our doctors also are having a hard tome diagnosing his symptoms. One neuro surgeon we saw suggested my son may have Occult tethered cord.
Here is the link. This may be interesting as it addresses a neurolgical reason for some urinary issues.

[[/url]http://neurosurgery4kids.net/tetheredspinalcord.htm
Patti , (EDS), Mom of 16 yr old with TC and EDS 6.6mm cerebellar herniation, 15 yr old with EDS Hypermobile
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Postby mamakitty422 » Tue Nov 27, 2007 11:14 pm

hi! thank you for your reply. my son actually had a CSF flow and brain study when they first found the syrinx, along with a C, T and L MRI with and without contrast and he doesn't have Chiari or a tethered cord.... but boy, i guess the SM alone can mess you up. I just feel so bad for him. Have you ever noticed behavioral issues with it? Zach is immature and very emotional... it's hard for us, as parents, to figure out what is him just being immature or behaving poorly vs. an issue related to his health.
mamakitty422
 

welcome

Postby razzle51 » Wed Nov 28, 2007 5:16 am

just to let you know that article that talks about age 47 is being changed . This is what Dr, Heiss says:
A patient read a study saying that 20% of SM'rs have a life span of 47 years, and average death was from pneumonia. Can you give your thoughts on this?

That information is based on old data from patients with severe, untreated syringomyelia from an era when patients with paralysis commonly died from side-effects of paralysis, such as pulmonary embolism (blood clots to the lung) and urinary tract infections. Patients with paralysis live much longer nowadays. Patients with only mild neurological deficits and successfully treated syringomyelia should lead a normal lifespan.

Dr. John Heiss
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby mamakitty422 » Wed Nov 28, 2007 7:30 am

THANK YOU, THANK YOU, THANK YOU, THANK YOU!!!!!!!!!!!!!!!!!!!!!!!
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Postby acupuncturist » Thu Nov 29, 2007 9:40 am

Kitty -

My son has a similar issue, although his syrinx isn't as long (his is T6 - conus). He is 6 and at this point his only symptom is urinary incontinence (as well as "subtle clumsiness" according to the ped neurosurgeon) . Preliminary testing with the ped urologist indicates that he has a spastic bladder; we are awaiting a date for video urodynamics testing (not looking forward to that). I don't have any answers for you -- just wanted to say hello and I hope your appointment with the new neurosurgeon goes well.

Kristen
acupuncturist
 

Postby mamakitty422 » Mon Dec 03, 2007 9:49 pm

hello! nice to meet you. our appt with neuro surgeon is tomorrow. urodynamics was last week and wasn't good. 2 years ago it was normal, now it is showing spastic bladder, not holding much and leaking. I will let you all know what happens tomorrow. by the way,.. got my ASAP packet in the mail today!
mamakitty422
 

Postby lalaswihart » Thu Jan 03, 2008 10:16 pm

My daughters Balder problems were fixed after her Ocult Tether cord surgery in New York at the Chiari Institue it is some thing new and I would look in to it if you can. I know it might not be related but it would be worth a look. There are great videos you can watch that explain what it is you can watch the videos on line at there website link below.

Good luck and my prayers will be with you.
Laurie
in Tx


http://www.northshorelij.com/body.cfm?ID=6407
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