New & need help PLEASE! Syrinx / Tarlov Cyst

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New & need help PLEASE! Syrinx / Tarlov Cyst

Postby creken85 » Wed Feb 15, 2012 12:09 am

Hello, I'm hoping someone with similar experiences can lend some advice.

I've been diagnosed with a 2-3mm wide thoracic syrinx from t7-t11. I also have several sub-centimeter Tarlov Cysts in the S1-S2 region and a number of degeneration issues (bulging discs, schmorl's nodes, osteophytes, reversed cervical lordosis, etc.) No chiari has been noted.

I'm wondering...

How common is a thoracic syrinx without chiari and has anyone had a successful surgery?
Is there anyone that has both a syrinx AND tarlov cysts? Is there some kind of connection?
I've researched Chiari 0, and tethered cord, are the respective surgeries things worth considering?

I'm confused and not sure where to turn. Have a phone consult with The Chiari Institute coming up and hoping they can help although I've also read "bad" press about them as well...
creken85
 
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Re: New & need help PLEASE! Syrinx / Tarlov Cyst

Postby Janice » Wed Feb 15, 2012 5:19 pm

Hi Creken & Welcome!

I have read your post & will try to answer your questions as best as I can.

How common is a thoracic syrinx without chiari and has anyone had a successful surgery?

In my opinion, thoracic syrinxes seem to be very common. Surgery is only advisable once a syrinx is greater than 5mm. Many individuals can be symptomatic w/small syrinxes, however, the syrinx might never reach the point where surgery is recommended. Surgery is not a cure, it's a treatment, as is medication therapy. If your syrinx is symptomatic, being less than 5mm's, your best treatment option is seeking the services of a pain management specialist. The PM doc can best match your type of pain to the possible Med. Seeing a PM doc doesn't mean you have to have narcotics, if you prefer not to, discuss this w/your PM doc. Many of us are treating w/a PM doc, as well as other specialists, depending on your symptoms. If you're unsure which doc's to see, start w/your Primary Care Physician. PCP's are there to direct your care.

No one can determine if surgery is successful until after it has been performed, and the recovery is underway. The only choices we have are; we'll stay the same, get better, or worsen. The majority are unsuccessful, for some - the surgery was successful, but the shunt had continued problems. Deciding whether or not to have surgery is extremely serious & should not be taken lightly.

Is there anyone that has both a syrinx AND tarlov cysts? Is there some kind of connection?

There were quite a few members who were dx'd w/both. No known connection has been made.

I've researched Chiari 0, and tethered cord, are the respective surgeries things worth considering?

You should definitely find out if you have either of these. The surgeries are very serious, but less invasive than shunting a thoracic syrinx. TCI is one of the best places to go. I never went but there were once many members who were treated there. Members who's surgeries were successful usually move on and start living, a small amount stick around to help new members in their journey. There is a room where many have posted their success stories, visit the success stories room, if you haven't already.

I've included a link below on Tarlov Cysts, if you need additional information, I haven't been dx'd but I do recall posts on the subject.

Take care, I hope I've been helpful in some way.
http://login.npwebsiteservices.com/Tarl ... mation.asp
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: New & need help PLEASE! Syrinx / Tarlov Cyst

Postby creken85 » Thu Feb 16, 2012 9:50 pm

Janice,

Thank you for your response. It's encouraging to know that there is a forum here for patients to discuss topics and share ideas.

I have read a lot of information regarding both tarlov cysts and syringomyelia (including the site you posted). I guess more than anything, I am merely *hoping* that there is a link between the two so it might explain how my syrinx formed in the first place. As I understand it, a syrinx is always caused by something else (chiari, tumor, trauma, etc.).

I understand the seriousness of the surgeries and find it disheartening to know that those are really the best "options" available. I briefly tried management with gabapentin, which helped alleviate a number of symptoms, but had to stop due to side effects (dizziness, feeling out of it). And, I definitely don't want to rely on narcotics to control the pain. So, the options are: a) to deal with it (which is extremely hard to do), or b) somehow try to surgically "treat" it even though I currently do not know the "cause".

I guess I probably speak for most of us when I say that I feel like I'm stuck between a rock and a hard place.

Chris
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Location: Wisconsin

Re: New & need help PLEASE! Syrinx / Tarlov Cyst

Postby Syrinx810 » Sat Mar 03, 2012 5:16 pm

I just wanted to welcome you to the group. I myself am new and don't have any advice, but I think this group is good for all of us. The one place where people understand. Best of luck with your consult with TCI. I too am heading that way. I'd like to hear how it went.

Best of Luck, Tom
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