Frustrated with Tarlov Cysts?

so.. I went to the primary care for the 2 cysts on either side of my spine that make me ache severely in my lower back... as well as, I believe, are causing the:

1) inability to empty my bladder
2) severe cramping in my legs and feet
3) pain and discomfort when I walk
4) pain in the back of my leg at the knee
5) numbness in my feet

and she sent me to a general surgeon who sent me for an MRI with T1 and T2 - with and without contrast - and they "didn't find anything."

Now the surgeon admits, he feels the cysts but says their nothing to worry about... meanwhile, I'm in pain and my symptoms continue to get worse.

Does anyone know a Tarlov cyst specialist in New York?

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Somebody did have surgery with I think a Dr Degen in NJ and was a lot better. He hasn't been on this site for quite a while, was on straight talk, one of the Yahoo groups and is back to work after suffering for years. Maybe if you join them they could give you more information. Good luck, know how you feel have all of the above myself.

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Thank you Maggie!

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I have the same exact symptoms as you and was diagnosed in 2008 with TC's located at S-2 and S-3. The written reported stated that the TC's were probably inconsequential. However, I sent a copy of my MRI's to Dr. Frank Feigenbaum, Dr. Donlin Long (formerly Johns Hopkins) and Dr. Mark Shaya - U of M Research Hospital. All three concluded that they were causing symptoms. Dr. Feigenbaum is ready to do surgery when I'm ready. I would suggest sending your MRI's to Dr. Feigenbaum in Kansas City, Kansas as he has done the most TC surgeries in the world.

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I am so sorry this is just so frustrating and seems to be the story across the board, have you contact Reta from the Tarlov Foundation, I wish I could help we have no one in Canada that will do anything so I can not help you with a referral. I have the same symptoms and the more I read about Tarlov the more scared I have become wondering what really is in store for us.
I am waiting for new MRI's but I do have a great pain specialist, which I will see this week. Unfortunately the medications is not working. I think Tridural, Lyrica and a bit of morphine is the best for me, but I do feel I am losing my life slowly. I do not understand why there is no financial help for Tarlov patients.

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Tarlov specialists are few and far between. you will need to do a lot of your own research. you can send films and MRI's to Dr Long and Dr Feigenbaum and they will eventually call you for a consult via phone and give you a preliminary opinion. surgery is no sure thing; many have had improvement, but not usually 100%. although a very few of us have come close(i consider my self about 95% better) there are still a few irritating symptoms.....quite manageable at this point! many have also had no improvement or have gotten worse. it is a very difficult decision, one that should not be made on a whim or mere advice from some unknown person on any site. this is a condition that effects your family and friends and the results of any surgery will also, either positively or negatively. so take your time and gather as much information as you can. get help to understand it if you need to. you will need support no matter what you decide. best wishes.

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i really do not mean to cause trouble but I've seen this site link mentioned a number of times, I went to the link provided http://www.americanboardofspinesurgery.org/

and couldn't find anything helpful unless I wanted to take the board exam to be a certified surgeon, did anyone else find out anything of interest to us there? please tell me so I know how to use the site for our purposes.

What were you others able to find out there. Often Camilleberg has some good links so I don't get the purpose of this link.

Anyone who has followed the link can you tell me what you found so I don't miss any important information for my TC research. My understanding was it would help us find TC specialists in our area?

Thanks

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Maggie was right about Dr Degan, he was talked about on straight talk , and the guy who had TC surgery with him wrote back a few times the last at 9 months post op, he was doing really well. It shouldn't be hard to find the thread there and contact that guy. If I remember that thread correctly I think Dr Degan did yet a different variation on the standard TC surgery. It would be great to have another person see him. Would give us more east coast options

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Libertybele & TCinNY,

I too have TC's at the S-2 and S-3. When I get my MRI report they ALWAYS say no clinical relevance. But I know better. In my opinion they should to! I sent my MRI to Dr. Frank Feigenbaum in 2009 and I have a letter from him stating the pain I suffer is from these cysts and surgery was set up and I became sick and did not have the surgery. Since then I have been diagnosed with Pulmonary Fibrosis, Diabetes, and Rheumatoid Arthritis.

I have a lot of pain in my feet and a very hard time walking at this time. I also feel as if my bladder does not empty completely. I get burning i my feet and strange tingly feelings in my leg and at time lower back. I suffer from a huge amount of pain especially if I am on my feet for more than 5-10. I have to take many breaks to even cook by sitting down. These TC's have changed my life tremendously!

Please know you are not alone in this terrible pain and life changes! Wishing you all much luck,

Sincerely,
Donna

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Donna - LibertyBele - et all - I do understand the pain you live with. I too live just like you. Everything causes pain. No matter what I do. I try to remain active because I have diabetes too. I try to walk a bit. Truly it's a bit. But I do have my diabetes under control. I changed the way I eat completely and that was the key. I wish it was that easy to control the TC's. Nothing controls that agony pain. I too cook sitting in my walker. Because everything hurts - sitting walking standing driving. I try to drive once a week. I grocery shop using a riding cart. The only way. Laying down gets the pressure off, but it's never gone completely. I am sure without my long acting pain meds I would be bed ridden.

I try to live in the moment. Today I am writing a story for my Dad for Valentines Day. About the love of his life - my Mom. I can't do alot. But everyone has something they live with. MY Dad 86 and diaylsis 3 x a week is the one who "is my cheerleader"
My husband has ms. Terrible disease. I try to remember some are much worst than me.


ps what is pulmonary fibrosis?

Darlene

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Sissy81 - I joined straighttalk - thank you

Darlene

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