Luli MRI Update - 10mo post op

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Luli MRI Update - 10mo post op

Postby JenandLuli » Wed Sep 29, 2010 1:26 am

Luli had an MRI yesterday because Her pain has returned. She had surgery last Nov and it resolved all her issues... but they are back.
Luli has 2 syrinx - 1 in her cervical and 1 in her Thorasic/lumbar. Surgery was done on the lower one.
Interestingly, it looks like her upper syrinx that was 6mm before surgery, went to 3.75 after surgery is now 6mm again... and that seems to be where alot of her pain (burning) is. She still has bladder function (didn't before surgery). The lower syrinx that was operated on is now split into 2 - 1 above the surgery site, 1 below.

I am posting all of this because Luli's surgery was a new one that no one had heard of. It was a Laminectomy and Myelotomy with a "gelfilm" places in her spinal cord is a "U" shape to hold open the incision. No shunt or stent was placed in there.

Waiting to talk to NS about what this all means.
Will try to get some pics up from the MRI.
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Luli MRI Update - 10mo post op

Postby Lipper5 » Wed Sep 29, 2010 3:58 pm

Sorry to hear that! I mentioned your daughters surgery prior to my sons. He said he was not into the gel thing. He believed the shunt was the best way. But even that is not 100 % guarantee. I am curious to what they say. I wrote to you awhile back because Aiden had the bladder issues which made us shunt the syrinx.

Krista
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Re: Luli MRI Update - 10mo post op

Postby JenandLuli » Wed Sep 29, 2010 4:07 pm

Krista- I remember. How is your son doing now after the shunt? Any I'll effects?
Are the bladder issues gone?
I wonder what they do for such a high syrinx... My dd's is where her neck meets her shoulders... Can't remember the spine numbers.
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Luli MRI Update - 10mo post op

Postby MichelleW » Thu Sep 30, 2010 11:33 pm

My syrinx was from the base of my brain to T8, midway down my back.

I had a subarachnoid shunt, that failed and 9 weeks later got a syringopleural shunt (drains into the lungs) which seemed to work...until now. :(
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
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Re: Luli MRI Update - 10mo post op

Postby SamuelsMom » Fri Oct 01, 2010 8:09 pm

I often wonder about Luli. Keep us posted.
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Re: Luli MRI Update - 10mo post op

Postby Lipper5 » Sat Oct 02, 2010 8:46 pm

Sorry to hear about that! Aiden's bladder function is much better after surgery. He still has the bowel issues. And he actually is really backed up again so this is the "clean out" weekend. We also FINALLY got diagnosed with Central Autonomic Dysfunction. He cannot regulate his temp properly. He gets overheated fast. Fevers all the time. We are now waiting on a new "possible" problem from the specialist that diagnosed him with lack of sweating. They think he might have Mitochondrial disorder. Do not want that....and I am really praying that is not the case. But we will see in about a week. Good luck! Let me know how you make out!

Krista
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Re: Luli MRI Update - 10mo post op

Postby memom » Fri Oct 08, 2010 7:30 pm

I wanted you to know I have been following Luli's journey. I am thinking of you and wish your entire family all the best. Please keep us posted.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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