syrinx shunt surgery? please advise

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syrinx shunt surgery? please advise

Postby andij » Sat Jan 21, 2012 6:41 pm

Hi I have NF1, chiari malformation, scoliosis and syringomyelia. I have had 2 fossa decompression surgeries and drainage of a cyst in my neck (and various VP shunt surgeries and spinal fusion surgeries). Each time I had the decompression surgery the syrinx has collapsed and then later returned. My neurosurgeon feels my situation is very unusual and feels I need further surgery to put a syringo subarachnoid shunt into the syrinx to permanently drain it.. The problem is that I have several syrinx in the cervical and thoracic area and they are unsure as to whether the syrinx are connected and are ‘communicating’ with each other. If they are not communicating then the shunt will not drain all the syrinx. I also have a cystic collection at the anterior craniocervical junction which will also only drain in they are connected. I have a VP shunt which is working correctly so they are unsure as to why the syrinx and cyst have returned. My consultant has said that due to the size of the syrinx (width – it fills the width of my spinal cord and length - cervical and thoracic) she is surprised I am not paralysed already. I have symptom including back, neck and shoulder pain and am slowly loosing function in my arms and hands and I am having weakness in my legs. I also have bladder problems. My consultant has sent my scans to other neurosurgeons around the UK and to a few neurosurgeons in other countries for advice and none have come across a case like mine so have no other suggestions than to attempt the shunt.. My consultant has said if the syrinx shunt surgery doesn’t work (which they are not very optimistic about) then there is nothing else they can do for me and I am likely to eventually become paralysed without this surgery.
I would like to know if anyone else has had a similar experience, multiple, possibly unconnected syrinx and whether anyone has had successful syringo subarachnoid shunt surgery. I would also like to know if anyone knows of any leading surgeons in the field of syringomyelia whom I could get a second opinion from. My consultant is experienced but this is such a big thing for me that I feel I need to look at all the options. I am due to have the surgery within the next 2-3 weeks. Should I go ahead with the shunt surgery? I need help! Thanks for any advice.
andij
 
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Location: England

Re: syrinx shunt surgery? please advise

Postby MichelleW » Wed Jan 25, 2012 9:06 am

My syrinx started at C1 and went to T8 and was 15mm wide. It was septated and in the beginning, my NS said the same thing as yours is saying. there is no way to know if shunting one will make the others drain. It will only work if they are 'communicating' meaning there is flow between them.

I had a syringo sub arachnoid shunt done in 2009 at T1 where the syrinx was largest and it failed immediately.
Two months later I had a syringo pleural shunt placed into the right pleura space.

That shunt successfully began draining the syrinx, and all the septated portions except at the very bottom, from t5-8

In fall of 2011, a follow up MRI showed that the sryinx had continued to drain but it became clear that the area from t5-9 (yes the lower part had expanded one more vertebrae was not actually part of the syrinx. It was an arachnoid cyst in the arachnoid space, the same space where the first shunt was, the same type of shunt your Dr is suggesting.

The finding of this large arachnoid cyst which initially appeared to be part of the huge syrinx made it clear why the initial shunt had failed. The flow in the arachnoid space was impaired which made it impossible that any shunt would have worked in that area.

In Nov 2011 I had a second pleural shunt placed into my left pleura space to drain the arachnoid cyst.

I am currently waiting to hear of a follow up MRI to check the progress of the collapse of the remainder of the syrinx and the cyst.


Honestly, if you don't know why you have a syrinx, let alone several, and they keep coming back.... i would certainly question the placement of an arachnoid space shunt. They're known, at least according to my NS, to be the least effective shunting procedure but it is chosen as the first option most often because it is the least invasive.

Good luck!! Keep us informed!
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
 
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Location: Moose Jaw, SK, Canada

Re: syrinx shunt surgery? please advise

Postby AKShel » Wed Jan 25, 2012 7:20 pm

Thanks for the info, Michelle.

I had decompression surgery in June 2011.....large arachnoidal mass was also impeding CSF....syrinx from C4-T8 did get smaller after surgery. Unfortunately, it is enlarging in two places and I go see my NS next week. The more information I have, and educaed questions I ask, the better. I also have MS to complicate things, the ms is currently stable. So, I'm reading, researching as much as I can.

Good luck, andij!
AKShel
 
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Re: syrinx shunt surgery? please advise

Postby andij » Thu Jan 26, 2012 2:55 pm

Thanks for the replies.

Michelle - the info on your experiences was really helpful. I will def ask my consultant as to why I am having a syringo sub arachnoid shunt rather than a syringo pleural shunt (not that I understand the difference - though it sounds like its to do with location). I am glad to hear that they finally found a solution to your syrinx problem. It is good to know that there are answers out there for someone in a similar situation to me. I hope you get some good MRI results soon and that your syrinx and cyst continue to drain/stay collapsed. Can I ask who your consultant is and where they are based?

Many thanks

Andij
andij
 
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Location: England

Re: syrinx shunt surgery? please advise

Postby MichelleW » Fri Jan 27, 2012 8:33 am

Dr. Fourney, Royal University Hospital, Saskatoon, Saskatchewan, Canada
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: syrinx shunt surgery? please advise

Postby andij » Sun Jan 29, 2012 5:32 am

Thanks very much Michelle, that's really helpful :-) Andi
andij
 
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Joined: Fri Jun 24, 2011 6:23 pm
Location: England


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