Valved vs. valveless syringoperitoneal shunts?

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Valved vs. valveless syringoperitoneal shunts?

Postby cashewhead » Mon Feb 25, 2013 11:39 am

Hello all,

I have a syringosubarachnoid shunt that needs to be diverted and converted into a syringoperitoneal shunt (the subarachnoid space can't handle the amount of CSF it is getting and it's caused a pseudomeningocele). My surgeon is recommending a valveless shunt since valves tend to clog or malfunction and require further surgery. I am worried about overdrainage, however he seemss to think that it is unlikely. Is there an objective benefit to one or the other? Is one significantly better or safer than the other?
Last edited by cashewhead on Mon Feb 25, 2013 4:07 pm, edited 1 time in total.
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby gunflint » Mon Feb 25, 2013 2:37 pm

cashewhead,
I am nowhere near qualified to answer your question. Hopefully someone here can help. I just wanted to welcome you. So WELCOME!
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby cashewhead » Mon Feb 25, 2013 4:06 pm

Thanks for the welcome! Yeah, it feels like a tough question, and SM is rare enough as it is. Here's hoping!
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby andij » Mon Feb 25, 2013 9:09 pm

Hi
Just wanted to say I have had a syringosubaracnoid shunt (that didn't work) converted into a syringoperitoneal shunt a few months ago. I should be getting my MRI scan results soon to see if it has worked but this surgery went well for me and was actually better than the original shunt surgery (lost leg sensation from the subaracnoid shunt).
You have given me something to think about and some questions to ask my neuro consult re the valveless shunt (as not sure what type I have).
Good luck with your surgery hope everything goes well and that the shunt drains the syrinx
whatever type you end up having.

andij
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby pmaxwell » Wed Feb 27, 2013 4:55 pm

does your current shunt have a valve?
Together We Can...
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby cashewhead » Mon Mar 04, 2013 6:59 pm

pmaxwell, No, my syringosubarachnoid shunt did not have a valve; I don't believe they normally do.
andij, hope your shunt keeps working and mine does too :)

FWIW, my doctor had some further consults with his peers and after seriously discussing the pros and cons, we went ahead and did a valveless. Seeing as it took the syrinx about 1 month after my last shunt to come back (and with a 8cm pseudomeningocele to boot), I am guessing I am a "heavy flow" type. So I can understand his concerns about drainage. Anyway, did surgery a few days ago and intial MRI showed some reduction. The only concern was they had to significantly reduce the length of shunt left in the syrinx. So many variables, we'll see how it goes. Thanks for the input!
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby gunflint » Tue Mar 05, 2013 2:09 pm

I wish you a good recovery. My thoughts and prayers will go out to you.
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby andij » Tue Mar 05, 2013 11:32 pm

I got my mri scan results on Monday from my syringopertioneal shunt surgery. sadly the surgery hasn't worked and my syrinx is back. still reeling from this news at the mo as they now say there is nothing else they can do (which is concerning when the syrinx is growing towards the brain stem).

cashewhead - don't get discouraged that this surgery didn't work for me. my syrinx is segmented and apparently i also have a tethered cord, which i didn't know about before, they say the surgery hasn't worked because the syrinx is segmented into quite a few sections. i really hope that you get good results from this shunt and it sounds like things are looking good so far. fingers crossed for you.
I also wanted to ask others who have a tethered cord, is it usual to be told, as i have been, that it is too dangerous to operate to remove adhesions? i have had 2 pfd surgeries and 2 syrinx shunts and the syrinx still remains (also have vp shunt) Has anyone had any different surgeries that has successfully collapsed their syrinx? I am in the UK but am now considering getting a second opinion from Dr green in Miami or Dr Scott facai ?(sp) in Colorado. Any advice on either of these dr's or successful stories of collapsing a segmented syrinx would be really appreciated right now. don't know what to do now!
cheers
andij
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby reedy » Wed Mar 06, 2013 7:23 am

Andij, I'm so sorry your scans don't show resolution of your syrinx.

I'm also based in the UK (London) and have had second opinions from a number of NSs in the UK and in the US. I am currently part of the NIH study so under the care of John Heiss. I have extensive opinions from, and about, the NSs I've seen. If you do a search on my posts you should be able to come up with an overview (I've written it out several times).

I have not seen Green or Falci, but both have good reputations. Dr Heiss consulted with Dr Green and a number of other specialists (at a conference) about a year ago when it was unclear which procedure to use for me. A provisional decision had already been made to put in a shunt, but after the group brainstorming (I'm inferring - I have no idea really how detailed their discussion was) it was decided to dissect some of the adhesions. I had the surgery last April, it went well enough, but I'm not sure that it worked as well as we'd hoped. I'll have answers in late April.

My one caution with Falci is that when I contacted his office about a second opinion consultation they agreed readily, but would not accept scans from other sources and wanted to do 3 new ones - at $5000/each - before discussing anything with me. The consultation price was also really high. I don't have insurance (I live in a country that believes in universal healthcare! Hurrah!) so paying $18K for an opinion seemed prohibitive. I've paid for all my other second opinions, but the price has been in the area of hundreds of dollars, not thousands.
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby andij » Wed Mar 06, 2013 6:18 pm

Reedy - thanks for your reply. I know we have chatted a few times on this site before and it is so helpful to have advise from others is similar situations.

So you had surgery on the adhesions then rather than a shunt? I know from the research that i have done that Dr Green feels this is often preferable and more successful than a shunt. I really hope that you get some good news when you get your results in April.

Thanks for your warning about Falci. Obviously I was aware there would be a consultation fee but assumed that would be done from the scans I have had done here and would have provided. I would struggle to afford to pay for scans. As you say we are very lucky to have the NHS behind us (though I do sometimes wonder if I am getting the best/right advise). I think I will see what Dr Greens policy is on consultation fees. I think I am also going to contact Mr David Coi @ Queen Square Hospital and Dr Candler and Dr Bassi Kings College Hospital as they have been recommended to me.

I have tried searching the site for your old posts but don't think I'm doing it right. I'll keep searching for what you have posted previously on NSs.

Good luck for your results.

Andij
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby cashewhead » Mon Mar 11, 2013 5:35 am

andij,
Sorry to hear about your syrinx returning. Keep looking up; there are always options. I have done a lot of reading journal articles on various SM treatments, including shunting techniques and complications. I'm definitely not a doctor, but I believe that a tethered cord can both cause a syrinx originally and in turn be caused by a shunt coming out of the spinal cord (e.g. a SP or VP shunt). In the first case (when the tethered cord causes the syrinx), I believe the recommended course is to un-tether first and see if that clears things up. If the tethered cord is a side effect of a shunt, however, I don't remember reading what the recommendation is (I would presume it would be removing the shunt and un-tethering).

I know from my own experience that there are some places along the spinal cord that are pretty difficult to operate on without causing massive damage (e.g. front of the cervical spinal cord). I imagine that if there is "tethering" in one of those areas that it would be difficult to treat.

I also remember a few articles about segmented syrinx shunts and treatment. I can try to get you the article information if you would like to track them down at your local library. I've basically been compiling my own personal syringomyelia bibliography, which isn't necessarily the most optimistic reading but is an irresistible practice with my Information Science background.
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby reedy » Mon Mar 11, 2013 3:28 pm

hi Andij

Try all the options that you can. When I contacted Falci's office I didn't mention my existing scans right off the bat, so maybe try that approach.The worst that can happen is that they say no, or give you the same high-priced quote. Do also write and call Dr Heiss, Dr Batzdorf (UCLA) as well as Dr Green. I also have consulted with: Dr Oro (Denver), Dr Iskandar (Madison, WI). In the UK I've seen Prof van Dellen (Charing Cross) who took my scans to his surgical partner Graham Flint (Birmingham). Katrine, who posts here, is under Flint's care. She is a clear and critical assessor of the situation and I think she thinks very highly of Flint. I've seen the team at the Walton Centre in Liverpool and think very highly of them (Dr* (Mr) Buxton). In London I'm under the care of David Choi, though I must say I don't see eye-to-eye with him on how to approach my problem. I think he is a top neurosurgeon, but he is far too certain on what to do with me, when EVERY one else says hmmmmm, not obvious what to do. But who knows, maybe in the end he will be shown to be right after all!
I actually haven't heard of the other guys, Dr Candler and Dr Bassi, even though I live not too far from Kings (I'm on the 176 bus line!)

By the way, are you an American? In the UK neurosurgeons don't use the title 'Dr' and are defensive about being called 'Mr' as here its a higher title for a surgeon! 'Two countries separated by a common language' as Churchill said. :roll:
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Re: Valved vs. valveless syringoperitoneal shunts?

Postby andij » Mon Mar 11, 2013 11:14 pm

Hi cashewhead - thanks for your reply, it sounds like you have done quite a bit if research on SM and seem well informed. As far as I know i have already had some untethering done but there is some in an area that is difficult to operate on (I don't fully understand what untethering involves tho). Any information on segmented syrinx would be very useful thanks, (if its not to much hassle to dig out the references so i can search for it). I have tried researching SM myself but other than the basics, a lot of info available on the internet is too complex and difficult for me to follow with my laymens understanding of SM and it's hard to know what is relevant to my case. (ps sorry I kind of hijacked your original post here, I know you didn't get the answers you were looking for, but I hope the valveless shunt works for you).

reedy - thanks for all those neuros names, they will def come in handy. I received copies of my scans today so need to get busy sending them to some of these guys. I'm British not American, so know the importance of using 'Mr' over here :-) (wouldn't want to offend them now would we!, tho to be fair they did spend many years training so deserve to be referred to by the correct title!). I just used the titles as they had been given to me, but probably should use 'Mr' if I'm not sure. I that know my consult contacted Mr Flint (who I have also heard is very good) but unfortunately he didn't have any different advice for us. Hopefully I'll get a useful 2nd opinion from one of these other consultants. Thanks for the warning on Mr Choi, I will now be cautious when approaching him as I don't really want someone to rush into doing something they just 'think' is right, especially when the spinal cord is involved!

Thankfully, although I am affected by the SM (have constant pain, numbness, loss of sensation, reduced hand function etc) for some reason I am not actually as bad as the scans suggest I should be. I have another condition called neurofibromatosis (Nf) and my neuro feels that for some reason the Nf has actually delayed some of the progression of my symptoms. Based on the scans they say I should be paralysed by now so obviously I am very thankful that I am not. I'm just hoping to find some answers now, so that it never gets to that point.

Thanks again for your help and advice.

Cheers

Andij
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