syrinx still same size 9 months after surgery

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syrinx still same size 9 months after surgery

Postby DCSTO » Mon Oct 05, 2009 8:32 pm

Our 9 year old daughter was diagnosed with a Chiari Malformation Type 1 with a Syrinx from C4-C7 measuring 12mm. She had a decompression surgery in Feb 2009, which was a success. However 9 months later her syrinx has not changed in size still measuring 12mm. We have an appointment to discuss our options with the NS. Is there anyone in a similar situation that can give any advise on what the next step would be for our daughter and what questions we should ask our NS.

Looking forward to any replies

VERY worried parents!!
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Re: syrinx still same size 9 months after surgery

Postby razzle » Tue Oct 06, 2009 9:02 am

all I know is that some syrinxes get smaller , some get bigger and some just stay the same . I really dont think there is anymore that can be done now . I had my surgery in 1999 and syrinx is still the same size. I go every 3 years now for a follow up MRI .Thats about all you can do. R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: syrinx still same size 9 months after surgery

Postby jupes » Tue Oct 06, 2009 9:17 am

Hello!

My daughter has not needed surgery yet but I have read in articles and other posts that a syrinx can take a year or longer to shrink. Sometimes the decompression only stops progression/growth and reduces symptoms without the syrinx shrinking a lot in size. Hope the pain and other symptoms have improved. Did they do a CINE MRI to see if the CSF flow was normal around the decompression? If the MRI shows plenty of room at the posterior fossa and the csf flow is good, the NS will probably just continue to monitor the syrinx and hopefully it will eventually reduce in size or at least not grow.

Sometimes with a very wide symptomatic syrinx, the Doctor will shunt it. This is usually done if there are no other treatment options and the syrinx continues to progress. You may want to post on the adult forum since there are several who have had the surgery and some may be in a similar situation as your child.

Good Luck and pray you find answers!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: syrinx still same size 9 months after surgery

Postby momof3indenver » Wed Oct 07, 2009 1:02 pm

My son's syrinx has never gotten any smaller. Our nsg told us that as long as it doesnt grow..then he is comfortable.
Hope that helps some..
Melissa
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Re: syrinx still same size 9 months after surgery

Postby DCSTO » Mon Oct 12, 2009 8:38 pm

Thank you for your replies we have our appointment tomorrow and hopefully we will have all of our questions answered. The decompression surgery went well, the csf flow is good , her headaches are much better and vomiting episodes have improved. We worried about the size of her syrinx, from what we have read it seems like one of the larger ones. She hasn't shown signs of any nerve damage, the only reason we found her syrinx was by sheer luck during a MRI for her pituitary. We will let you know how it goes tomorrow.

DCSTO
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Re: syrinx still same size 9 months after surgery

Postby CamsmomKelly » Mon Nov 02, 2009 3:35 pm

Hello,
My sons holocord syrinx remained the same after decompression surgery and revision. He does have damage from the syrinx and was showing signs of further so they shunted him in June 09. He had MRI in August showed syrinx almost totally gone, hopefully the shunt continues to do well. I would think if your daughter isnt showing signs of nerve damage to leave it alone. :)
Kelly
mom of Cameren 11 yrs. old
Chiari,retroflex odontoid,syringomyelia,scoliosis
Chiari decompressions 6/2005,5/2006
Syringopleural shunt 6/2009
Boston Braced off & on 6.5yrs
scliosis surgery- soon
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Re: syrinx still same size 9 months after surgery

Postby Lipper5 » Tue Nov 24, 2009 10:53 pm

My 3 1/2 year old had decompression Feb 08 and his still remains the same size. We have to go every 6 months to see a change or we keep going until around 6-7 years of age. He now has started to have some accidents when going to the bathroom. He says it just comes out. So we are doing one a month early so we make sure nothing has changed. They told me they normally go away after surgery. Some take up to a year. But that some stop growing but never get smaller. This does frustrate me because I dont really understand if staying that size will cause damage. Good Luck!
My 7 year old now has started to get bad headaches and they come and go and some of the head pain lasts 5-10min and some require med. So they did an CT scan because he was saying it felt like a needle was stuck in his head. Now found Chiari with him too! We are going for a full brain/spine mri w/cine study in 2 weeks. I hope this isnt bad news! Good Luck!!
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