New here - Idiopathic syrinx

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New here - Idiopathic syrinx

Postby jamieboros » Tue Sep 18, 2012 12:47 pm

My son Andrew will be 3 in December and his last MRI showed his syrinx
had doubled in size. It spans from T7 to T9 and as of June, was measured at 7mm.

Our neurosurgeon has no sense of urgency about it and is completely
convinced it will self resolve. He also said that in January 2011, after which
it grew to twice it's original size. The doctor's course of action was to wait a
year and repeat an MRI. I was not comfortable with this and after much pushing,
we will have an MRI/CSF flow study in December which is 6 months from the last one.

I have concerns that have been creeping up since May and snowballing.
The neuro is completely adamant that they cannot be related to the syrinx. I.e.
Chronic constipation (now on a daily does of miralax), toe walking, sensory
problems, no longer sleeping at night (wakes up crying all night long unless I
give him advil, which I don't know if it is safe to use every single night??),
and now he is falling frequently and running into walls/doors, ect.

He has a history of tethered cord, progressive infantile scoliosis, idiopathic syrinx, severe reflux
causing FTT, tortecollis, plagiocephally, delayed gross motor, and restrictive
lung disease.

I feel completely uneducated in this area. I haven't found much online in regards to idiopathic cases and our NSG is so lax about the whole thing, he's not much help.

Any info you have or personal stories to share would be so appreciated!

Jamie Boros
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Re: New here - Idiopathic syrinx

Postby pmaxwell » Thu Sep 20, 2012 1:02 pm

Jamie, why do they call it idiopathic instead of relating it to the tethered cord? If the syrinx is larger, then there is a probably a blockage, most likely due to scar tissue but could be any number of things. Have they talked about doing a flow study to determine if there is a blockage? It is best to find the cause of the syrinx and correct that issue. Your son's condition seems to be very complex. Finding a pediatric neurosurgeon who specializes in complex issue of the spine, may mean having to travel but could be vital in finding answers and correcting his symptoms. Keep searching for answers.

Patricia
Together We Can...
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Re: New here - Idiopathic syrinx

Postby jamieboros » Thu Sep 20, 2012 4:11 pm

Our neurosurgeon has given me very little information and has said there is no clear cause, which is why I was going with the idiopathic wording. He actually has never explained to me that it could be from the tethered cord. He just keeps insisting it will self resolve and no intervention is needed.

We will be having a flow study Dec 26th. The neuro wanted to wait a year, but after much pushing with letters and phone calls, I got him to agree to 6 month follow up.

The syrinx was present when the the tether was first diagnosed and has doubled after release. Is it likely scar tissue could be a factor? That is very good information.

I am very willing to travel (we already travel to Shriners from Portland, Or area to SLC, Utah for the scoliosis). I was trying to get him seen at Seattle Children's but my son is on state medicaid in Oregon and they will not cover out of state care. (Our travel and care through Shriners is all free of charge) I did request a referral for the other pediatric neuro in Portland but she works closely with our existing neuro, so I'm sort of expecting her to just follow suit with his plan of action. Hoping I'm wrong though....I feel stuck with this neuro which is a really awful place to be.
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Re: New here - Idiopathic syrinx

Postby razzle » Fri Sep 21, 2012 2:36 pm

have you seen Dr. Ellenboggan in Seattle ...
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: New here - Idiopathic syrinx

Postby jamieboros » Fri Sep 21, 2012 11:18 pm

Because of our state insurance, we are not able to go to an out of state doctor. We are limited to treatment in Oregon. :/
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Re: New here - Idiopathic syrinx

Postby razzle » Sun Sep 23, 2012 3:49 am

these drs are listed on a site as cm/sm drs . Have you tried any of them .

Dr. Kim J. Burchiel
OHSU
Department of Neurosurgery
Portland, Oregon


Dr. Johnny Delashaw
Neurosurgeon
OHSU
3181 SW Sam Jackson Park Road, L472
Portland, Oregon 97201-3098
503-494-7737

Dr. KashaVan Pett
The Spine Clinic
655 East 11th Suite 4
Eugene, OR 97401
541-434-6328
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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