syrinx now?

[Sug_97]

It's been a long time since I've posted. It feels like I've spent most of this year having and recovering from surgeries.

History:
Dx: 09/2010
Decompression: 10/2010
VP Shunt for hydrocephelus: 12/2012
VP Shunt came out and had to be put back in: 04/2013
VP Shunt came out again and had to be put back in: 11/2013

Over the past couple of months, I noticed many of my initial chiari symptoms coming back. I had an MRI last week and here's the results:
"I looked at your brain MRI and I think there are a couple of issues of concern regarding your neck. The first is a disc herniation which we already knew about, but this could be a bigger factor than before. The second is a collection of fluid in your spinal cord called a syrinx, and this too could be a source of trouble. Finally, the radiologist is concerned that your shunt is draining too much fluid."

Anyone know what I might expect?

[selmaS]

  Hi,.,,goodness I pray 2014 goes much better for u...wow.

Hmmm well, it is possible that a disk or scar tissue from a shunt or decompression could cause a syrinx to form.

Refresh my memory, as to how long post op u got ur shunt and y.....

What type of dura patch and was EDS ruled out?

[Sug_97]

When I had my initial decompression, the head pressure never really went away. Just before Thanksgiving 2012, I got vertigo, really bad. The vertigo was linked to hydrocephelus in my cerebellum. So the vp shunt was put in just over two years after my initial decompression.

Dura patch was synthetic. I don't know what kind, but I do know that it has a pin sized hole in it. My shunt was placed right beside the hole.

I haven't been tested for EDS. When I brought it up, they said "I don't look like someone with EDS" and "that's not my department."

[selmaS]

  Just from what I am seeing from others, those with shunts, or ICP post op and leaks tend to find they also have EDS after the dust settles....I really feel if  it is found B4 and certain precautions taken some of these issues do not surface. JMHO

But it does make me wonder if u could have EDS as it can cause many of the same symptoms as Chiari...

U may want to look into finding a  Dr informed on Chiari and EDS and the connection to see if it may be playing a role in ur issues.

[Sug_97]

Update:

So I had a second (non-programmable) valve spliced into my VP shunt (at my collar bone) in January. My head has felt better than it has in 14 years.

I have a the syrinx still and my pain is almost more than I can take, not to mention all the numbness. As usual, I start off with my NS saying, "I don't think it would cause that." But then it always turns out to prove me right, so I think he's getting a little faith in me.

I have a MRI next Monday to check the status of my syrinx and the buoyancy of my brain (Lol). If my syrinx hasn't grown, they'll probably just wait again and do another MRI in a few months. If it's bigger, as I suspect it will be (if it's size is what's causing my pain), they will probably either decide to try a LP shunt (if my syrinx has thinned my spine enough) or they may try to deal with my herniated disk in hopes that it will help the syrinx.

[selmaS]

Thanks for the update...so sorry u r still in so much pain.....

I pray all goes well with ur MRI on Monday.....