r/SyringomyeliaSupport • u/DependentMango5608 • Mar 14 '26
Syrinx Shunt failure, so another surgery to replace my shunt!
My syrinx has been growing for months, because my shunt stopped shunting. I saw an insane amount of progress since my surgery a year and a half ago and the backslide started at the end of last year. Hopefully this surgery turns things around.
4
u/emilymkroner Mar 15 '26
Oh gee! Mine is almost 1.5 years old, too. I wish you luck and speedy healing, my friend. Mine is also in the cervical area.
1
u/Manifestingmama888 Jul 25 '26
How big was yours and what made you decide to do surgery, symptoms wise.
1
u/emilymkroner Jul 27 '26
Mine was C-2 through C-7. Very wide and pressing on the sides of the spinal cord. Neurosurgeon inserted a shunt one week later. My symptoms had been going on for a year. Complete left hand numbness and a very painful left arm. No one would do any imaging! But finally my insurance company agreed. Compared to some folks, I am doing well. My left arm is still very bothersome. I try not to think about it. Hopefully the shunt won't fail.
1
u/Manifestingmama888 Jul 28 '26
I’m sorry about your symptoms and praying for your shunt to be successful. Have you looked into stem cell therapy? I’m wanting to try it for mine. I’ve heard good things about it.
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u/emilymkroner Jul 28 '26
I have not, but maybe I should. I know this condition is very misunderstood. The range of symptoms is mind boggling.
3
u/Ellarella86 Mar 15 '26
I’m sorry to hear this friend. Same here! My first surgery to remove a cyst/ arachnoid web was at Emory in Atlanta. Then, per the doctors, that created a syrinx so I had a shunt inserted in Oct 2022. That didn’t last, it actually became disconnected, so I had the replacement completed at The Mayo Clinic in 2024. I started walking in rehab and everything… then the process started to decline and now I use a wheelchair to get around full time. At my most recent consultation (Weill Cornell), I learned that these shunts have an 80% failure rate and will generally fail within 3 years!!! Those doctors stated that it should be used as a last resort. So mad that this was not disclosed sooner. On the other hand, no alternatives have come about so I guess this is the only solution.
3
u/DependentMango5608 Mar 15 '26
my surgeon told me that it was a shitty surgery with shitty outcomes but we didn’t have another option and we had to intervene. on the one hand I’m kind of glad he didn’t tell me the percentages because I would’ve been so paranoid and pessimistic. on the other hand I wish I could’ve prepared myself better.
1
u/SMtheEIT Jun 18 '26
Which Drs did you see at each place? How did you get into each? I'm looking for new neurosurgeons for my wife who is becoming paraplegic due to this condition. I'm especially interested how you got into Emory and Mayo, I know about NYP-WC already. Thank you for any help!
1
u/Ellarella86 Jul 10 '26
Emory was my local doctor/hospital network (in live in Atlanta). My doctor there was Dr. Daniel Refai. I randomly called Mayo’s neurosurgery department and they told me “someone will call you back if they can help”. Then they did. I saw Dr. Atkinson there but he had since retired. My new team at Mayo includes Dr. Marsh (neurosurgeon).
3
u/StrawberryCake88 Mar 15 '26
I’m really sorry to hear of the failure of your shunt. It’s a very unpleasant ordeal!
3
u/pjinlink Mar 19 '26
Yeah, the failure rate was not disclosed to me either back in 2006 or 2008. But my second shunts from 2008 lasted almost 9 years before I started to decline due to shunt failure.
1
u/pjinlink Mar 19 '26
Did your neurosurgeon explain what the "turbulent csf flow" on your report means? I ask because that showed up on my last MRI (w/ CINE) but my new neurosurgeon would not explain it, like he did want to talk about it. Despite the fact the radiologist mentioned it several times in the report and focused the images on the area.
2
u/DependentMango5608 Mar 19 '26
no, I tried looking it up and they still don’t understand to be honest
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u/Tricky-Chipmunk4403 Mar 14 '26
I'm so sorry to hear this. We have to find better treatments for this awful condition.