TARLOV CYSTS

I have been diagnosed with another Tarlov Cyst; trying to find a doctor that knows how to treat this Rare Disease if very difficult. A person has to Travel; for some, the Pain is too strong for a long drive or even a short Flight...... plus, other Travel Expenses.

So far, I have only learned of a doctor in Kansas, California, and Maryland. Should a physician read this; and you treat Tarlov Cysts, please let us know out there that suffer from this horrific Life of Chronic Pain.

I have tried everything I know to get some relief; very hard. But, I continue to Pray and try to keep a Positive Mind.............. God Bless and hope there will be more physicians that can help us! Cah

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I am 28 and a female. Just had surgery with Dr. Feigenbaum in Kansas City. Very nice man and great staff. All I can say is save your pennies, borrow $, starte a fundraiser,this is the doctor that will help improve the quality of life.

Brooke

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Hi Brooke
May I ask how long since you had surgery and are you completely well. I am considering flying from Australia to see Dr F, however, have doubts.
Thanks
Dawn

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Thank you Brooke for responding and giving me HOPE...... If I may ask, what did you have done exactly? Did he just Drain Cyst, remove it or inject the Glue they speak of some physicians using? Please let me know, if you do not mind?

I am so HAPPY FOR YOU................

Again, THANKS and have a great day! Cynthia

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Brooke,so glad to hear you are back, time to recover for you now, and so glad you are getting well, we were all thinking about you.

Margaret

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I have my appt with Dr. Feigenbaum on Dec. 19..it seems so far away but I'm sure time will fly and it'll be here before I know it..I'm excited but nervous..not sure what my outcome will be but I'm sure as long as it's Dr. F. I'll be just fine..I am only 31 years old with 2 young kids..girl 7 and boy 3..so I have to be able to function for my kids..my husband is a truck driver and is the sole provider for us..Thank God for his insurance that is allowing me to see Dr. F. as an in network dr..

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Good Afternoon Ladies! SO GLAD to be on this Site! It helps knowing that we all understand how the Tarlov's can affect our daily living!

BROOKE: How are you feeling? I am courious - do you feel better? What did doctor do exactly? RELAX AND GET BETTER SOON..............

Hi Jean - thanks for additional information! I will check out the other Sites on Tarlov Cysts...... Thank you for response! God Bless! Cynthia

HOPE ALL OF YOU LADIES HAVE A FANTASTIC NIGHT - I WILL PRAY FOR YOU ALL - Keep the Information (any new Updates) coming................. Cynthia

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Yeah Jean..Raiderbell is me..Tina from TN..LOL..Yeah my appt is Dec. 19 at 9:30..my husband says we're gonna make a weekend out of our trip..so we'll see..I think we're gonna rent an SUV or a van so that we'll ALL be more comfortable than in my car..for such a long drive, not only me to worry about being comfortable..LOL..Brooke, how have you been doing since your surgery?? There are tons of questions I have for you but I want to let you have a little longer healing time before I bombard you with all kinds of questions..The main thing is making sure you are recovering well..I've heard Dr. F's staff is really great..I know I spoke with Lauren and Angie..they both seemed really nice..Lauren was telling me that I could go see other NS but they would probably give me the run around about the whole thing..I told her I didn't want to take any chances with any of that BS and wanted to set up my appt..she put me thru to Angie who scheduled me and took all my info..so far they seem really nice..I can't wait to actually meet them in person..

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Hi,
I had an MRI because of severe lower back pain. The results included 3 perineural cysts....are these the same as "Tarlov Cysts" ??
Thanks,
Jaycee

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hi everyone,
jaysee, there might be a difference between the two. i was diagnosed w/both. sacral area 1 is perineural subarachnoid cyst extensions around S1 roots. then 2 sm TC on S2 bilaterally( both sides.i thought they said s# at 1 point.. i find the pain is exhausting,wears you down and out. select comfort beds (w/the air tubes)u can adjust the air out to take pressure off that area. U can find them used..i know they are not affordable though. as for treatments; i've tried traction,physical therapy,etc. and it was horribly miserable cause it irritated my tailbone/sacral area. pool therapy where u can hang in the deep end of a pool to let your feet dangle in the water while hanging on to floating noodles helps, but sitting on one to do exercises made it way worse. there is an abundance of nerves in your sacral area so make sure you do see one the the specialists for TC..what all the others said is true, go to the sites and read a lot. know that you are not alone

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FYI- just a suggestion-if or when u get referred to a neurologist or pain specialist; it might be a good idea before go through the agony to get there and all, to see what the specialist/dr knows about Tc or other cysts,if they believe in them or have ever even heard of tc. also, if anyone goes in for a specific test to see truly what kind of cyst you have; make sure that's the test you get,to let them know not to make any changes once u are in getting the actual mri,ct,etc. i've read somewhere that they can do ultra sounds from the inside (for ladies) and see cysts that way too. make sure to let them know,that u wanted anything and everything they see on mri findings; whether they think they are incidental,not the cause,etc. reported. some Drs/radiologists make a personal decision not to list things if they think it's not the cause of your symptoms and then they don't put that finding in the report so u know it's there either way. as u know-your insurance may only approve that test one time. to see cysts there is a some specific test to get in order to see if your cyst is a valved or non-valved(free flowing?) To see if you have any filling defects at any level. Whether or not the cyst communicates w/the cerebral spinal fluid. you'll find a lot when you check out the sites. I'm still learning too, so hope this helps someone while u are looking

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