Re: Anyone with Syrinx advice?

[Guest guest]

Sherry,

This is exactly the same as Bexon. He had 2 MRIs, one of just his spine that showed no tethered cord but did show a small syrinx, too small to operate on at this point.

They did a second MRI with dye contrast, of both the brain and spine, before casting to rule out chiari and tumors in the spine, etc...which were all ruled out. Our doc said we would follow up with another MRI in a year to watch the syrinx.

I have read they can grow rapidly and cause nerve damage, at any point- even in high school or adulthood. We're wondering if we should do MRIs every year to be safe.

Another ortho told us he'd seen tons of these and he's never seen one grow. It could be nothing to really worry about, in other words, unless our child has symptoms- tingling or numbness, pain, etc. My problem with that is that once he has symptomes, it's irreversable damage! So, we will have to tell him when he has more language to tell us if he feels anything, hopefully without scaring him. Maybe it will never grow. In the meantime, we feel like treating the scoli is the best thing we can be doing for him.Heidi, Bexon's Mama, (23 months old, in 2nd cast from Salt Lake City Shriners, currently down from 61 degrees to 29)

Subject: Anyone with Syrinx advice?To: infantile_scoliosis Date: Wednesday, June 10, 2009, 6:05 AM

Morning all!Logan had his appointment w/ the Erie Shriner's nerosurgeon yesterday regarding the syrinx they said they found during his MRI. The Dr. told us Logan doesn't have a tethered cord or a Chiari Malformation and that the syrinx will likely not grow at all. They will keep an eye on it w/ annual MRI's. They do another next year with dye that they'll insert inside of him to get a clearer picture.Does this make sense at all to anyone else dealing w/ a syrinx or should my husband and I seek a second opinion? Everything I've read seemed to indicate that these syrinx's do grow over time and eventually will need removing. He assured us though that Logan didn't have that type. I guess I'm just more confused than ever.ThanksSherryMom of Logan, age 5In his second cast from Erie Shriner's

[Guest guest]

Hi Sherry,

When we were in the hospital yesterday we got talking to a mother of a 9 year

old with a Syrinx at C2 level. The doctor found the Syrinx around age of 20

months and it hasn't changed in size significantly in over 7 years. Apparently

there are no plans to remove it as it's so close to the brain. The mum told us

that her daughter has MRIs to check for growth (I think she said they have them

yearly)but that may be because of the Syrinx's position.

Sue (We are in UK but every hospital/doctor seems to differ in approach to

treatment of Scoliosis here)

>

> Morning all!

> Logan had his appointment w/ the Erie Shriner's nerosurgeon yesterday

regarding the syrinx they said they found during his MRI. The Dr. told us Logan

doesn't have a tethered cord or a Chiari Malformation and that the syrinx will

likely not grow at all. They will keep an eye on it w/ annual MRI's. They do

another next year with dye that they'll insert inside of him to get a clearer

picture.

> Does this make sense at all to anyone else dealing w/ a syrinx or should my

husband and I seek a second opinion? Everything I've read seemed to indicate

that these syrinx's do grow over time and eventually will need removing. He

assured us though that Logan didn't have that type. I guess I'm just more

confused than ever.

> Thanks

> Sherry

> Mom of Logan, age 5

> In his second cast from Erie Shriner's

>

[Guest guest]

Hi my daughter has five small pockets of syrinx between c5 and t2. She has

pins and needles in her hands and legs. She suffers pains in her hands and legs

too and says her hands go hard. She's nearly five and we've seen a diference in

the frequency of these problems. At the moment we are just watching but we do

avoid contact activity such as football games in P.E. and we are consious to

check her after falls as although hopefully they will not advance any more, we

were told that they can become progressive after an injury.

I guess i'd say if there are no symptons just keep an eye on it. If you are at

all worried they can do a repeat mri and physical observasions of her

neuromuscular reflexes.

Annette

[Guest guest]

Hi Annette,

Is surgery to remove them a bad idea? Sorry if I am ignorant about this, it's so concerning to me that she has these symtoms at such a young age. Our almost 2 year old has small syrinx(s) as well. No symptoms that we are aware of. I appreciate your input and experience on this. Thanks.Heidi, Bexon's Mama, (23 months old, in 2nd cast from Salt Lake City Shriners, currently down from 61 degrees to 29)

Subject: Re: Anyone with Syrinx advice?To: infantile_scoliosis Date: Wednesday, June 10, 2009, 3:28 PM

Hi my daughter has five small pockets of syrinx between c5 and t2. She has pins and needles in her hands and legs. She suffers pains in her hands and legs too and says her hands go hard. She's nearly five and we've seen a diference in the frequency of these problems. At the moment we are just watching but we do avoid contact activity such as football games in P.E. and we are consious to check her after falls as although hopefully they will not advance any more, we were told that they can become progressive after an injury.I guess i'd say if there are no symptons just keep an eye on it. If you are at all worried they can do a repeat mri and physical observasions of her neuromuscular reflexes.Annette