I want so bad to find help and info. about these tarlov cist's that I have painfuly had for 3yrs. and that has totally changed my life...it has gottin to a point where every day I have cronic pain... I hate that this is effecting my pore family who has to hear my constaint complaints daily and knows when to stay clear of me! Is that not sad? Even that ads to my pain..."HELP"! My pore huband who just got home from eight long months in Aphganistan has to come home to a complaining wife! We have 5 very wonderful "active" children who range from 16 to 6...I really hate that they all have to hear me! I am frusturated with the health community, who I'm finding has know clue what or how to treat me... My confidence in my health care is gone and has left me questioning their abuilty to know how to treat me... I mean ...when you see your "doctors" looking up what a "tarlov cist" is and saying they have never heard of it... it makes me wonder if I will ever get some relief. Please help me or maybe stear me in the right direction!

Thank you!
Cassie

Hi Cassie, I'm so sorry that you are having such pain. Welcome to the forums..great place for support. Here is the link to the chronic pain forum


http://neurotalk.psychcentral.com/forumdisplay.php?f=10
warm hugs.

Hello Cassie and welcome to the NeuroTalk community

we do have a forum for tarov cysts and, although it is not yet very active, still, there are some members who do also have this painful condition and so you will find some support and hopefully also some information to help you get the correct treatment

here is the link to that forum (it is a subforum in our general health section)
http://neurotalk.psychcentral.com/forumdisplay.php?f=73

Hi Cass!!!
to our little corner of the world so happy that you found us!!!

I'm sorry that you are in so much pain... I don't know anything about Tarlov Cyst's but I do understand pain.

I thought you might like this forum thread also...

We have a Social Chat forum, where we have a lot of silly fun...
http://neurotalk.psychcentral.com/forumdisplay.php?f=35

PLEASE FEEL FREE TO ROAM AROUND... You will find the nicest people here!!!! If you need to rant, rave, yell, or scream about what's going on in your life that's OK. Please feel free to join in the conversations... ask questions if you have them, help others if you can...

I'm glad you found us and look forward to seeing you around the boards!!! If you have any questions or need help roaming around the boards... please let us know... we will gladly help you!!!


Abbie

I'm really happy to meet you! I wish there was a place I could steer you where you would find great health care and doctors who really help. But I just haven't found it yet. I think the problem is the pain, and it doesn't matter if it comes from tarlov cysts, or constant back pain, or migraines. It's the pain itself that so disrupts our lives, and makes us want to scream. That is something we all have in common. I've been in pain for five years and seen twenty-seven doctors, but I don't even have a diagnosis yet.

I doubt you'll find anyone here who can cure your condition, but they can teach you loads about how to live with it the best you can. There is some real experience on these boards, and people who just love to help out others who share their limitations and trials. I hope you take the time to get to know them, because they can really make a difference in your life. They have in mine. I really hope to see you around the forums, and look forward to getting to know you a little better. Good luck, and great wishes!

Idealist

(((Cass))) Welcome to the forum. I remember someone in Spinal Disorders, I think, that asked me about a Tarlov Cyst as I have constant tailbone pain. I'm sorry, I can't remember who it is.

Pain just plain sucks and I'm so sorry you have it.

I take it a doctor already diagnosed a Tarlov Cyst, or is it something you highly suspect? Yes, it really DOES suck when a doctor shrugs and looks at you like you are the one that has no clue.

Here is a link to a tarlov cyst web site. Maybe you could print out some information and hand it to your doctor. It's just so difficult dealing with the medical system at times.

Hugs, and I hope we continue to see you around here. There are wonderful people here.

WELCOME Cassie... So sorry you are having so much pain..... Hopefully, you can find some relief soon..... Glad that you found us.... This is a great place for info, advice and comfort....

take care....

Hi Cassie!

Sorry you're suffering, especially with five active kids! I'm afraid I am as clueless as your doctors, but I want to welcome you to a very nice community of supportive and positive people.

Here's a little joke for your short ones:

How do you get out of an elephant's stomach?

Run around 'till you're all pooped out.

LOL, been telling it for decades and it still crackups me!

Cass, I could have sworn I left a link for you, besides the one to our own group here.

This has a pretty good faq reference. http://www.tarlovcyst.net/faq.htm

Hi Cassie,

I can feel your pain and frustration. I have had severe leg pain, bladder problems and now terrible lower back pressure which led me to see 5 different specialist. After countless MRI's and tests they found a tarlov cyst which is compressing my nerves. None of my doctors can give me any advice or even talk to me about Tarlav's disease. I sent my MRI to Dr. Long at Hopkins and I am hoping for a quick response. I am taking Lyrica and Celebrex (just started Lyrica last night). I am 41 yrs old and have 3 children. My life seems to have changed overnight. I was at the gym 3-4 times per week, active socially and very involved with my kids activities. Now I can stand or sit for about 2 hours and then I must lay down. I would love to connect with you for support and to share info.

I did read something about Lysine and alkalinity of the body - have you heard anything about that?

Pam