syrinx increasing in size 22 month old

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

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syrinx increasing in size 22 month old

Postby Lipper5 » Mon Jan 21, 2008 4:40 pm

Hi I have had two opinions for my 22 month old son. One Dr says the syrinx is small and should be watched but do nothing at this time because we dont know why it is there. And one Dr says it is really large and something should be done now..or in the next month or two. The first MRI showed a syrinx and 6 months later it had increased in size. He was first told he also had Chiari but second scan said no. I am so confused over this and really not sure what to do. I can go get a third opinion and get even more confused. I can also repeat the mri in 3 months or do the surgery now. He has weakness already in the left leg and has an imbalance issue..Any suggestions? :cry:
Lipper5
 
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Postby angie7 » Mon Jan 21, 2008 8:48 pm

You need to see a specialist. The fact that it is in increasing is something that needs to be looked at ASAP by the experts. It can cause permanent damage and he is so young...Where are you located? Here are 2 of the top notch NS dealing with peds and SM

Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: (773) 702-2475
Office Fax: (773) 702-5234



* Dr. Arnold Menezes
Neurosurgeon
University of Iowa
Hospitals and Clinics
Iowa City, Iowa 52242
Phone 319-356-1616
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Location: Florida

22 month old syrinx

Postby Lipper5 » Mon Jan 21, 2008 9:06 pm

I did try to call Dr. Frim today but he was not in. I guess they were closed because the hours they gave did not make sense to the reply that the office was now closed. I did see Dr. Sutton and CHOP in Philly. The first visit he gave a big 5 minutes of his time. We live near the poconos. And I am so confused at this point. One Dr. is saying he needs the shunt surgery and the other is saying dont let anyone cut him open!
Lipper5
 
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Postby angie7 » Mon Jan 21, 2008 10:30 pm

Today was Martin Luther King Jr. day, maybe why he wasnt in. Call back tomorrow and see him ASAP! Please do not do any surgery until Dr Frim has looked at his MRI's. Shunts are very dangerous and risky.....
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby Lipper5 » Tue Jan 22, 2008 10:58 am

You mention that you or one of your children have cm0. How did you find that out? Dr. Sutton had mentioned the possibility of that. Dr. Li has said that there is no such thing because it is like saying some has a negative fever. I just wondered how they came to diagnose the 0
Lipper5
 
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Postby angie7 » Tue Jan 22, 2008 3:07 pm

I have all the problems listed in my sig, my twins do not have it. I was told by a NS in my town that I didnt have CM and that he couldnt help me until I could no longer walk. I found a specialist (Dr Oro, CM/SM specialist) and he did a cine mri and found that I had complete obstruction of csf flow and surgery was scheduled the following month. CM 0 is something that the 'common' NS dont acknowledge but the specialist know that it does exist and can cause problems. Like mine for instance, if I would have listened to the NS in my town, I could have died b/c your brain can not live without csf flow. That is why finding a specialist is the best bet. They know everything that this disease can do, what to look for, and the latest research....

Also CM 0 is more commonly seen in children, could explain why your little one has the syrinx since CM is the leading cause of syrinxes.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby brianfsmom » Tue Jan 22, 2008 4:09 pm

Hi

Well, that's a tough spot to be in. I would definitely not sign up for surgery until I had enough concurring opinions. The main reason? If your son has or does not have chiari, the treatment would be totaly different. Chiari 0 is easy enough to diagnose. Maybe he needs a more detailed MRI as well as a third, fourth, fifth opinion!

Good luck!
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Postby Lipper5 » Tue Jan 22, 2008 7:38 pm

6 months ago he was diagnosed with Chiari I and a syrinx and then now 6 months later no Chiari I but a larger syrinx. The CHOP Dr said there is never a "no cause" for a syrinx. He said it is either Chiari I, tumor, or Tethered cord. And now he has none of the above. Dr. Li the other NS said you can have it for now reason and you need to treat what is there. He said if it had not grown in 6 months he would wait and watch but because it has grown he feels that now is the time to do it. The last Mri done this month was a 90 min to the brain which showed no evidence of Chiari and normal pulsatile csf flow around the cervucinedullary junction at the foramen magnum (what ever that means) Then the other mri of 2 1/2 hours the thoracic spine w&w/o contrast showed increases size from six months ago of the syrinx within the thoracic cord. Prominent from T4 through T9 level. Mild expansion of the cord in that area. Marked thinning a surrounding cord parenchyma. No pathologic enhancement. I called Dr. Frim's office and left a message but no call back as of yet.
Lipper5
 
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Postby angie7 » Tue Jan 22, 2008 7:46 pm

Chiari doesnt just disappear so that would send up a red flag. My guess would be differing opinions as to whether or not he has it. As my specialist said to me "if it isnt normal, something isnt right"

How large (width/length) is his syrinx? I would continue to call Dr Frim or Dr Menezes. I would have them *at least* take a look at his mri's before surgery is even considered. If he does have CM and by only placing a shunt, could cause more damage.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby Lipper5 » Tue Jan 22, 2008 7:52 pm

The woman I met that did his monitoring on his first Mri said her son had Chiari I and his had receded. I do want to have another opinion. I just question how fast this thing will grow and how much damage it is doing by waiting.
Lipper5
 
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Joined: Mon Jan 21, 2008 4:29 pm

Dr. Frim

Postby PandR'sMom » Tue Jan 22, 2008 9:28 pm

I just wanted to mention that Dr. Frim is generally in surgery all day on Tuesday. On the day of my dd's surgery he was with us until close to 7pm. You can try emailing him. His email address as listed on his UofC page: dfrim@peds.bsd.uchicago.edu
Kim
Mom to Patrick (12yo) & Rebecca (10yo, CM/SM/Scoliosis, decompressed Oct '06 by Dr. Frim)
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Postby Lipper5 » Tue Jan 22, 2008 9:55 pm

Thank you Kim!
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Postby lalaswihart » Tue Jan 22, 2008 10:29 pm

I would also look into the Chiari institute all 4 of my children see Dr Bolognese, and we have had really sucessful surgeries with him. Good luck and I will say a prayer that God leads you in the right direction and that you find awnsers.
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
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Postby Lipper5 » Wed Jan 23, 2008 11:30 pm

Got a call today from Chicago. They said Dr. Frim's nurse will be given the info and they will call me in the next couple of days. Does anyone out there know if he charges to look at the film?
Lipper5
 
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Postby angie7 » Thu Jan 24, 2008 9:39 am

I dont believe he charges for reading the films.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Joined: Fri May 25, 2007 8:29 pm
Location: Florida

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