Syringo-pleural shunt versus subarachnoid shunt

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Syringo-pleural shunt versus subarachnoid shunt

Postby Sueli » Fri Sep 09, 2011 3:39 pm

Hi! I'm new to the message board and have an important question to ask other patients. I have a very wide cervical syrinx which is now symptomatic. Primarily my pain is in my calves and walking is increasingly difficult. I also have numbness and tingling in all four extremities, but not constant. My neurosurgeon who is one of the cm/sm specialists is recommending a syringopleural shunt as soon as possible. Another Dr. I consulted with recommended a syringo-subarachnoid shunt. I know the first is more invasive and and there is an open dura. The second has a smaller diameter and closed dura. However, I think because of the smaller diameter it may occlude and fail sooner.

Any thoughts? Anyone with similar experience? There is no chiari or arachnoiditis. A shunt is the only option. I just don't know which one. Prayers are very, very welcome!
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby Kate456 » Fri Sep 09, 2011 9:32 pm

Welcome to the board Sueli,

I wish I had information to help but I don't. I also had a very wide cervical syrinx but because mine is Chiari linked I had decompression to collapse the syrinx last year. The surgery worked so I don't have to have a shunt. However, I can certainly empathize with the nerve pain, numbness and tingling in all four extremities as I have the same. I hope that you are able to get good guidance to have clarity as to the right shunt to choose and that you get some relief once that shunt is in.

I can certainly offer prayers. What part of the country are you in?

Kate
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby Kate456 » Fri Sep 09, 2011 9:32 pm

Welcome to the board Sueli,

I wish I had information to help but I don't. I also had a very wide cervical syrinx but because mine is Chiari linked I had decompression to collapse the syrinx last year. The surgery worked so I don't have to have a shunt. However, I can certainly empathize with the nerve pain, numbness and tingling in all four extremities as I have the same. I hope that you are able to get good guidance to have clarity as to the right shunt to choose and that you get some relief once that shunt is in.

I can certainly offer prayers. What part of the country are you in?

Kate
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby Sueli » Mon Sep 12, 2011 5:06 am

Hi Kate!!

I live near NYC. I'm getting the last minute jitters about doing a shunt and wish I had done more homework. I wish there was more info from folks with idiopathic syrinx and best dr.s for that as it requires specialists that just deal with the spinal cord. Thanks for your encouraging words!!

Sue
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby MichelleW » Wed Sep 14, 2011 9:51 pm

I have an idiopathic syrinx from c1-t8.
I was shunted with a subarachnoid shunt on 09-09-09 and it failed within weeks.
On 18-11-09, just ten weeks later, I had a syringopleural shunt placed. Up until now, it's been working, but hasn't completely drained my syrinx.

I had an MRI on this past Saturday and I get the results from it on the 20th of September, so I will get more info on the status of my shunt then.

Based on my experience, the best option is the syringopleural shunt. The subarachnoid shunt can fail, as mine did simply because of pressure difference between the syrinx and the arachnoid CSF area. If the pressure in the CSF is higher than in the syrinx, it will never drain. The pleural shunt doesn't have that risk as everytime you breath, the movement of your lungs acts like a pump to suction the fluid out.

The recovery was not as bad with the syringopleural shunt for me, but probably because they had already done all the bone work with the previous shunting proceedure.

Hope that helps, if you need to ask me anything, send me a PM and I will get back to you :)
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: Syringo-pleural shunt versus subarachnoid shunt

Postby reedy » Tue Sep 20, 2011 1:35 pm

Hi Sue, Sorry you have a difficult choice and no clear answers. That's not unusual in our situation! I suggest you get as many opinions as you can, then go with whatever ends up in the balance seeming right at the time.
If you do a search on my past posts you'll see that I got up to 9 opinions from experts on syringomyelia, then was lucky enough to be taken on a study by Dr Heiss at NIH. Even he changed his opinion on what to do in the course of the week right before I went in to surgery - and he left the final decision (syringopleural shunt, lumboperitoneal shunt or nothing) to me and my supportive family. We went for the lumboperitoneal, which is minimally invasive, but its not clear that its doing much.
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby Sueli » Fri Sep 23, 2011 8:05 pm

To Reedy, Wow I just went to see 4 neurosurgeons, and one was really dismissive. I wish I had more time, but I was told my situation is more urgent, so there isn't really anymore time to search for a surgeon. I have a really well known one who wanted me to do the syringopleural, but another experience pediatric neurooncolgist suggests opening me up and if the arachnoid isn't to badly scarred, he would start with the subarachnoid shunt, if it is scared he may have to do a syringoperitoneal. He thinks for me a syringopleural may have too much sucking power. My syrinx is very short but extremely wide! Wish I had more time to sort it out, but the clock is working against me. On the positive side, I really like this neurooncolgist.He is the only doc so far who really told me what to expect after the shunt. I liked the way he did it.

To Michelle, How are you holding up, after the initial shock of the neurosurgeon's news about the second shunt? You are going to be the true shunt expert on these boards, I dare say!!
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby MichelleW » Sat Sep 24, 2011 10:21 am

Coping as best I can. I'm a little scared, but mostly of te post-op pain and recovery,being a Mom of 3 young kids.
But it is what it is, and this is the needle in the haystack we've been hoping to find. It's not my ideal outcome for how to treat it, but if it gives me just a little of my life back, it's gonna be worth it.
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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Location: Moose Jaw, SK, Canada

Re: Syringo-pleural shunt versus subarachnoid shunt

Postby Sueli » Sat Sep 24, 2011 2:35 pm

Hi Michelle!

Do you have family and friends to help you in the post op period? I'm hoping you do ! :)
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby MichelleW » Sat Sep 24, 2011 8:03 pm

I am so lucky that way. My hubby is awesome and he's going to take some time off to be with me for surgery, since it's 2 hours from home.
I also have three kids, 8 - 9 - 10 years old who will be staying home while my mother in law comes to stay with them. She'll probably stay a few more days after I get home to help out while hubby goes back to work. Thankfully the kids are a little older than last time (two years ago) and they are awesome little helpers for Mom when she's not feeling well. I also have a very good friend who will be here to help with whatever she can.

I really don't know how I'd do this without them.
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
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: Syringo-pleural shunt versus subarachnoid shunt

Postby Sueli » Wed Oct 26, 2011 2:40 pm

I finally had the courage to have a shunt done on Oct. 7th. I had a syringosubarachnoid shunt at C7. I was fortunate to have no sensory deficits from surgery. I do have a new burning pain below the incision on the left shoulder blade area. The neurosurgeon has seen this when an extremely distended syrinx is decompressed suddenly. The syrinx is still there, but only 1/3 of the huge size it was. The burning may pass with time. It isn't constant, I don't know if it happens when I move my neck or arms. It's early days yet. My right leg seems much better and yesterday for the first time, my left leg felt almost normal for a few hours. Thank God! I don't know what will happen in future , but I know that I'm glad I had a shunt , without a doubt!!

Thank everyone for their advice, support and prayers!

Sueli
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby reedy » Tue Nov 01, 2011 2:32 pm

Wow, Sueli! You don't mess around, do you! Congrats on taking the plunge and getting the job done. It sounds like you did exactly the right thing - your decrease in symptoms is very heartening! I bet you and your family and your neurosurgeon are all over the moon!
Can I ask who you went to see?

Good luck, MichelleW. Follow in Sueli's successful footsteps....
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby reedy » Tue Nov 01, 2011 2:33 pm

(PS of course that doesn't mean her surgery was the one we all need....every situation is very very different. Once you find a good doctor, follow his or her advice...)
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Re: Syringo-pleural shunt versus subarachnoid shunt

Postby MichelleW » Tue Nov 01, 2011 3:09 pm

Glad to hear it went well Sueli! Keep up the awesome recovery!
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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Location: Moose Jaw, SK, Canada

Re: Syringo-pleural shunt versus subarachnoid shunt

Postby Sueli » Wed Nov 02, 2011 10:03 pm

Thank you reedy for your encouraging words. Perhaps I could give more info about Dr.s if you pm me. Right now,, my computer is down
:( and all I have is my android phone and very poor formatting abilities! I'm still having pain on the left leg and trying to be patient. I see the surgeon on Nov. 15.
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