Shunting a syrinx

[chickiet]

Has anyone ever had a shunt put in to drain a syrinx (and hopefully keep it from refilling)?

I have a syrinx at my surgical site - it deflated after each of my 2 surgeries but then refilled. While it has not expanded in length, it appears to have expanded in diameter. So it appears likley that it is pressing on the nerves to push them out of the way.

In the meantime, my neuropathic symptoms have continued to worsen over time. I've been working with my pain mgt doc and am now on 450 mg of Lyrica per day (split in 3 doses) plus 50 mg of Nortriptylene at bedtime (just increased from 30 mg).

Nothing else shows up in my MRIs except for the 2 syrinxes (the lower one at T3 is thin and does not appear to have changed. There might be a slight amount of tethering as well at the surgical site.

Other than continuing to up my meds, the other option offered is to go back in and insert a shunt (i.e. a small tube) into the syrinx which would allow it to (hopefully) drain out, thereby relieving the pressure at that area and hopefully keep it from coming back.

The thought is that it might alleviate my symptoms somewhat, or at least keep them from worsening. I don't like being this medicated but currently don't see any other options which would allow me to continue being mobile, working, etc.

Risky? Yes - nobody knows whether this will help and/or if the shunt would work or fail vs. whether an additional surgery would result in worse outcomes. But the other side of me is really leaning toward going that route - at least then I'd feel like I've tried everything I can try to do, and would pretty much know where I stand. If I do it, I would have the surgery later this month or early October. I could wait and see what another MRI shows, but that would put my recovery closer to the busiest time for me at work (if I need to be out, now's the time to do so).

My questions:
1) Has anyone ever had a syrinx drained and/or had a shunt put into the syrinx? And if so, what has been the outcome?
2) Any other thoughts/comments?

Thanks,
Chris

[Joel]

Chris:
Wow. Sorry to hear. I have no infor for you other than to say talk to your hubby, the docs, us, and then make what you think is the most intelligent decision. If you want to call me, feel free. On the surface of things, I'd say go for it, if your conditions are worsening now at a faster rate when compared to the past few years. Are you sure it is not just a short-term change, like most of us get once in a while?
Joel

[paul55]

Hello Chris

I'm sorry I don't post much but I just happened to see your question regarding a shunt. I do in fact have one. I had two syrinxes as a matter of fact. One just under the dura, and the other right smack in the middle of the cord. They removed the one inside the dura, and the other was shunted back into the dura area. To dangerous to remove. Although both were biopsied as arachnoid cysts. So far, so good. I haven't had any problems with it. My surgeon has had very good outcomes with this procedure. If you go on the American Syringomyelia forum,(this is what I actually had) the folks there seem to be set against placing a shunt.

I'd like to make a point as my doctors did early on when I was losing my feeling in my arm. I was told that everything that happens because of the syrinxes, burning, loss of sensation, loss of motor skill may not come back. This is what drove me to do the surgery. My arm is better, but still not the same. The damage is done. And I have what everyone else here has with the numbness from the waist down just by virtue of going into the cord to get the syrinxes. So it is a difficult choice to make and unfortunately no one can make it for you. But I do know how you feel. I just happen to be one of the success stories with regards to a shunt. (SO FAR!!!)

If you would like to talk to me direct, pm me and I'll give you my number. Anything I can do to help you I'd be happy to.

Paul

[bethann]

Chris,

I also have a syrinx. I was told to shunt it could cause more issues. The shunt can clog over time. When my Dr did the surgery he said he left an opening (it was to large for a shunt) and the syrinx would drain. Well my syrinx has gotten thinner... but is a little longer than it was. I guess this is not a large concern. I have been told it could be causing some of my issues but I was also told that after surgery it would never go back to normal (like a balloon that has been deflated) I sent my MRI films to Dr. Jallo after my surgery to have him look at my syrinx and he had said not to do anything to drain it. Now mine is not at this time changing nor pushing on any nerves from what we can tell. What is causing yours to fill up more? Is there blockage somewhere? Scar tissue? I would want to know why if the tumor is removed it is growing.

Beth

[chickiet]

I am aware that shunts are not perfect. The info from my ns as well as what I've read in the literature is that some don't work well at all and others last for many years. I do know that after both of my surgeries the syrinx deflated and then filled up a few months later (and my symptoms worsened at the same time).

I also realize that this is not going to be the cure-all of my leg and foot issues. A lot of those were caused by the surgeries themselves, and I fully expect to have some (more or less - - who knows?) after another surgery. It's the worsening symptoms that are troublesome to me.

The plan would be to detether my cord and also insert the shunt - - those are the only new elements in my spinal cord and thus either or both are likely suspects for why my symptoms have gotten worse over time and why I keep increasing my meds to try to get better relief.

I feel that it would be better to try to address both of these problems sooner rather than later. My theory is that if we try, then I'll know that we've tried everything to get some improvement. If it doesn't work I will be more willing to accept that this is how I am going to be and if things worsen I'll have to deal with it. I am just not comfortable doing nothing and then always wondering "what if we'd tried"...

I do appreciate the feedback. I've got another MRI and a CT scan soon and then will be meeting with my ns to decide on the overall plan.

I will keep you all posted...

Thanks,
Chris