no longer IDIOPATHIC SM! I have a cause, and more surgery

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no longer IDIOPATHIC SM! I have a cause, and more surgery

Postby MichelleW » Tue Sep 20, 2011 9:45 pm

The good, the bad...and I'm gonna be the ugly. You got it. More surgery to make my back look even more creepy with scars.

The news is that the syringopleural shunt in my right lung is working wonderfully and has again decreased the size of the syrinx significantly. Enough so that a diagnosis can be made as to why it is there in the first place! That's right, my syrinx is no longer idiopathic.

I have a large arachnoid cyst that initially appeared to be part of the syrinx but now that the syrinx has drained significantly, it is obvious that the cyst exists. And it is fully blocking the flow of CSF in the arachnoid space around the spinal cord. (hence why the syrinx developed in the first place)

The cyst is putting a lot of pressure on the spinal cord and is likely a culprit for the loss of sensation and most of the problems I've been experiencing.

Plan is to place a syringopleural shunt (again) into the left lung to drain the cyst... sometime in November.

The annoying part? Had we been able to find this stupid cyst first, the syrinx probably would have drained itself and I wouldn't have needed the shunt for it.

It's frustrating, scary, but at the same time I feel relieved and happy, which makes no sense. I hate having to go through all this again, but at least the needle in the haystack has been found and maybe this is the start of the end of this nightmare for all of us.

Nothing like having two syringopleural shunts, one in each lung. *sigh*
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: no longer IDIOPATHIC SM! I have a cause, and more surgery

Postby Sueli » Wed Sep 21, 2011 11:21 am

Oh Wow, Michelle!! That's incredible!! Can't they just remove the cyst without another syringopleural shunt? I've heard a little about arachnoid cysts, but not too much. Mysterious little things..even the name is off putting, right?

Anyway, you're my hero!!

Sueli
Sueli
 
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Joined: Thu Mar 31, 2011 9:06 pm

Re: no longer IDIOPATHIC SM! I have a cause, and more surgery

Postby MichelleW » Wed Sep 21, 2011 12:18 pm

The NS said that he could also cut a 'window' in the cyst and allow it to drain back into the space it should be in on its own, however he said in his experience that those windows often heal over and the cyst just refills.

From the reading I have done it says many of the cysts can be resected and removed. However, sometimes they can be attached with adhesions to the spinal cord or to the arachnoid wall in which case a shunt is a better option.

"
The standard treatment of an isolated spinal arachnoid cyst is complete surgical removal of the cyst. Surgery typically results in excellent outcomes in terms of resolution of symptoms, and is effective across a large range of cyst sizes.
Unfortunately, not all isolated spinal arachnoid cysts can be fully resected, owing to their location or to intraoperative findings such as extensive adhesion of a cyst to the spinal cord. In such cases, fenestration of the cyst wall, percutaneous drainage, or shunting the cyst into the peritoneal cavity may relieve symptoms."


Lucky me, sounds like that's my case. Except it's not peritoneal..it's pleural shunting.

But then I read things like:

"There are some patients with both intradural arachnoid cysts and syringomyelia. Cysts were resected with the aid of an operating microscope, and intraoperative ultrasonography confirmed that normal pulsation of the subarachnoid cerebrospinal fluid had returned after resection. The syrinx cavities were not surgically manipulated, yet MRI taken 3 months after surgery revealed that they had significantly diminished in each case. "

and this:
"The best predictor of recovery in patients who undergo surgery for spinal arachnoid cysts is if the clinical presentation correlates with the defect. Usually the postsurgical prognosis is good, with significant to full neurologic recovery in patients with all cyst types and clinical presentations. "

So... with any luck and tons of hope, perhaps my life will be better post-op than it is now.

I don't feel like a hero, I feel scared to death right now... but I trust my NS and know that he's worked a lot of long and hard hours pouring a lot of energy and thought into my MRIs to unravel the mystery that was my case. So, onward and upward...surgery awaits me I guess.
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: no longer IDIOPATHIC SM! I have a cause, and more surgery

Postby birdlover3 » Tue Sep 27, 2011 9:18 am

I'm glad it was found.

I don't know how to word my feelings other than to say I feel sorry for you. I hope the new surgery will help. Hopefully some person here has gone through it & will be able to give you 'learned' advice.
birdlover3
 
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Joined: Thu May 17, 2007 4:54 am


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