Syringopleural shunt - post-op problems & followup?

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Syringopleural shunt - post-op problems & followup?

Postby reedy » Wed Feb 08, 2012 1:43 pm

It looks like next step for me is a syringopleural shunt to try to limit my neurological decline. I've been advised that I might consider having the surgery here in London, rather than Washington, where I had my last surgery (a lumboperitoneal shunt), the main reason being that post-operative follow-up would be more immediately available. So far no one has told me what the specific problems are that might need the follow up attention. Can any of you help shed light on this? What is it like after a syringopleural shunt? What are the things you need to look out for?
What kind of symptoms are common?
Would the complications/symptoms be things that would require urgent care?
Would the symptoms obviate me from being able to travel? (A flight to Washington is 7-8 hours)
How long would I be in an 'at-risk' status?

Any opinions, observations, personal stories, welcome!
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Re: Syringopleural shunt - post-op problems & followup?

Postby gunflint » Wed Feb 08, 2012 1:58 pm

I will be paying attention to your story as what your faced with is one of my biggest fears. I wish I could offer useful advice. If it were me I would go where ever the surgeon with the most successful record is. Even if it were in Iran. I wish you well.
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Re: Syringopleural shunt - post-op problems & followup?

Postby reedy » Wed Feb 08, 2012 2:14 pm

Thanks, gunflint. I feel the same, but am wavering, since the surgeon I like the best (by far) is suggesting I stick around home because of the follow-up. Your vote helps me remember to stick to my guns(flint)!
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Re: Syringopleural shunt - post-op problems & followup?

Postby MichelleW » Wed Feb 08, 2012 11:49 pm

Having done the syringopleural shunt procedure twice, and the sub arachnoid shunt once... I hope I can shed some light on this.

Post-op is painful. But since you've already had a lumboperitoneal shunt, I assume you know somewhat what it will feel like.

You will have an incision on your spine and a second incision on your shoulder blade for them to access your lung space.
It will hurt to breathe in deeply for a few days...but for those days you will be on flat bed rest to avoid a CSF leak. I did 48 hours after both pleural shunt surgeries.
The second time however, i had a complication. The shunt was draining the cyst too quickly and I had a low CSF pressure headache which at first they thought was because of a leak, and that put me on another 60 hours of bed rest.
I also had what they initially thought was a blood clot in my lung, but it turned out not to be... it was just the excess fluid causing the pain and shortness of breath.
For a while, you will experience pain similar to pleurisy... inflammation in the rib cage and pleural space from the trauma from the surgery. It is PAINFUL. You will likely need some kind of narcotic pain meds to control your pain for a few days at least.

After many hours bed rest, you will have to take it easy when you get up again... walking, believe it or not, will make you short of breath. And that gets painful.
You will not be able to lift much of anything for a while so the area in your lung space can heal. That included for me... cups, food to my face... but I think it was more due to the location of the spinal incision and the trauma to my shoulder blade muscles.

I would assume the reasons they don't want you to travel is because of the risks of:
[list=][*]blood clots (flying that distance would require sitting for extended periods which isn't good for people, especially someone who just had major surgery
[*]risk of CSF leaks - those can happen and believe me, if you get a low pressure headache from a leak, you'll want to be VERY close to your surgeon, and pain meds![
[*]Follow up to make sure the shunt is draining properly, and not over/under performing
/list]

I am 3 months post op and still have pain some days from the surgery. But much less than after the first pleural shunt.

If you want, you can read my blog at http://www.caringbridge.org/visit/MichelleWiens - all of the details of all my surgeries and recoveries are on there.


Good luck!





It looks like next step for me is a syringopleural shunt to try to limit my neurological decline. I've been advised that I might consider having the surgery here in London, rather than Washington, where I had my last surgery (a lumboperitoneal shunt), the main reason being that post-operative follow-up would be more immediately available. So far no one has told me what the specific problems are that might need the follow up attention. Can any of you help shed light on this? What is it like after a syringopleural shunt? What are the things you need to look out for?
What kind of symptoms are common?
Would the complications/symptoms be things that would require urgent care?
Would the symptoms obviate me from being able to travel? (A flight to Washington is 7-8 hours)
How long would I be in an 'at-risk' status?
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: Syringopleural shunt - post-op problems & followup?

Postby reedy » Wed Feb 15, 2012 8:34 am

Michelle, thank you so much for taking the time to provide a detailed reply.
I've read your post and blog several times now, and have gone through a range of emotions about it. At first my anxiety went up a bit in confronting the hard variables, but in fact, when you take a step back, it looks like your surgeries were a success in the end. You are, it seems, better off than you were, or than you were heading. In the photos you are able to raise your arms, your scar looks like it should get better soon, you report that your headaches are less. Is that all accurate?

My lumboperitoneal shunt was kind of not a big deal, to be honest. I was in the hospital for a week, and I did have horrible CSF headaches, and was a wibble wobble at walking, but it all seemed pretty manageable. For that surgery they don't remove any vertebrae - its just a plumbing job with little drainage pipes that go from back to front. So I don't think I've learned what heavy surgery is all about yet. You have jumped through that hoop of real fire - I haven't yet.

Short term did you lose proprioception and need physical therapy in walking skills? My doc said that was a likely outcome. He said I would likely lose a bit of walking ability (in my case we are trying to save my hands, as the nerves are declining there).
How about long term and your ability to breath deeply?
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Re: Syringopleural shunt - post-op problems & followup?

Postby MichelleW » Wed Feb 15, 2012 11:46 pm

My scar has healed quite nicely. I will post pics one day soon of what my back looks like now.
My headaches are definitely less than before surgery, but I do often get a weird sensation of a kind of pressure, almost like you are about to get dizzy, but without the dizziness. Only lasts a few minutes.
I can move my arms just as easily as before surgery now. I once in a while get some tightness in the muscles in my back but a massage or Aleve seems to be all I need to get it under control.

I have had laminectomies of T1, T2 and now a partial of T6. He did the most recent surgery in some new method to avoid doing as extensive of a laminectomy as before. He also didn't have to access the spinal cord this time as the cyst was on the outside in the arachnoid space, so he didn't need as much working room.

Short term did you lose proprioception and need physical therapy in walking skills?
Yes... after the first surgeries, I did lose sensation in my legs and feet which made walking difficult. Over time, and with therapy in hospital for a week, I did walk again almost normally. It took some time for that to happen, and after a few months, some feeling began to return, or I got used to feeling that way, not sure which anymore. After the most recent surgery, I was able to walk almost normally, aside from the headaches and dizziness. But again, the spinal cord wasn't cut into this last time, so i didn't have as much loss of sensation. I do have poor balance though since the first surgery and I often can't tell where my feet are if I am not looking. It only affected my lower limbs though, not my hands or arms. But I never did have much for problems in the upper extremities.

How about long term and your ability to breath deeply? I can breathe normally now... but it is impaired for a while after surgery until your body learns how to deal with the excess fluid in the pleural space. I do get out of breath more easily now though, but that could be contributed to being older, being more inactive and losing the ability to do much physical exercise... or it could be the shunt. Who knows. But for the most part, it doesn't hinder me too badly.

Hope that helps.


I had my follow up MRI today. We'll see what I find out in the next week or so.
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: Syringopleural shunt - post-op problems & followup?

Postby reedy » Thu Feb 16, 2012 2:46 pm

This really helps hugely. Thank you, MichelleW, for taking the time to communicate all this so clearly. I wish I could send you a bouquet of thank-you flowers, or bake you some cookies or something!

I'm aware that my situation will likely be quite different in some ways, and similar in others. The main message I get from you is that its been a challenge, but over the long term, a manageable challenge and you are indeed better off than if you hadn't done the surgery. That really makes me feel like I can go in to this with some optimism.

It would be great to hear from some other people. I thought this was a fairly common procedure (within our relatively rare condition), and this is the main website for people to exchange information. What have the rest of you experienced?
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Re: Syringopleural shunt - post-op problems & followup?

Postby Catrine » Fri Mar 16, 2012 3:38 pm

Hello Reedy and all,

I wanted to share my recent update on my recent syringopleural shunt and post op.

• Surgery went ahead on the second go-round (15th Feb), went up the night before
• The op itself went well. A syringopleural shunt at T11. My surgeon said that my spinal cord was already so distended in that area that he really didn’t have to cut through much actual spinal cord to get to the syrinx.
• That’s bad in one way as it means much of the damage had already been done but good in another as most of the possible outcomes he mentioned re: bowel, bladder, sensory have been static. I have had some loss in sensation in my right leg but I can deal with that. On a positive note I have gotten some function back in my right arm which tends to lead me to think my syrinx is communicating.
• The syrinx collapsed immediately when he cut into the cord and he said that the syrinx had really been under high pressure (read: very advanced and full of CSF)
• As for the upper shunt pain in the lungs that others have complained about here, I have been lucky: not really a problem for me, just minor incision pain. I also did not need to lie flat and had no mobility restrictions. There were pressure headaches for about 4-5 days and funnily enough, I had distorted hearing for about a week but it did go away. My surgeon said all of these things were down to the change in CSF pressure.
• My main issue during the whole experience was with the anaesthetic. I was nauseous for 1.5 days and it really did a number on me for some reason

As opposed to many people here, I already was quite disabled due to my spina bifida. My main aim was to save my arm movement so that I maintain some independence. So the surgery was exactly what I needed. I know these shunts can block (50/50 - as Michelle W can attest to) and we are still not completely sure if my syrinx is commmunicating but I'm choosing to be positive right now. Now it's on to the rehab! It will be a lot of hard work but I'm up for it if it helps.

I'll post this update in a few threads but wanted you all to know.
Catrine
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