I had surgery 12-5-2012 for Tarlov Cyst with Dr. Feigenbaum in Kansas City. I had 5 giant cyst in my sacral area. One was removed and 4 drained and wrapped with a bovine heart. If anyone has question email me.

I too, have just been diagnosed with 5 cysts. I am in the process of hearing that there's basically nothing that I can do except to learn psychological coping methods. I'm currently on celebrex, requip and tramadol. I took Lysine today as well. My husband, bless is heart, has been a crusader in this in the last 72 hours and came across your surgeon. What advice can you give me? I have 3 little ones and i'm only 37. I'm frustrated, mad, feel defeated, while at the same time ...I feel elated that I"M NOT CRAZY!!! These took 5 years to finally diagnose. It's been decided that I've had these for around 20 years. I would love to hear about your surgery and any advice you can give me! thanks so much! Shelly

I sorry on my message I wrote my surgery was 12-5-12 the date was 12-5-11 I hit wrong number . I did have 5 giant csyts 1 taken out the rest were drained and wrapped. I was in hospital for 4 days. I had severe spinal headaces for 3 days. I was good for few month after surgery, then found out on my 3 month MRI I had more cyts. I had another spine surgery with De. Feigenbaum 8-22-12 this time at his Dallas hospital where staff were great. I first surgery was in Kansas City horrible nursing care. Again I felt good couple months. Now I'm in horrible pain had MRI sacrum November I have 3 cyts now. I have to pay the fist $10,000 for every surgey because he is not in my network. How much pain are you in???

I have been diagnosed with a large Tarlov cyst in my sacral area which is causing severe pain and discomfort in my lower legs - particularly bad in my right leg, with numbness from the knee to the toes. I would like to have surgery. Amy, was this surgery expensive? I live in UK.

Thank you for posting. I live in NC, May I ask where you live? And the process for Dr. Feigenbaum?

I am in NC too - do you know Docs in our state; I am at beginning of Tarlov journey, so not even thinking surgery, just want someone knowledgable to manage pain while I pursue alternative therapies.

I also have Tarlov cysts, but others named and not named inside my spinial cord. Two days agao they found cycts in my kidneys also, not named just kidney cycts. Any idea why people get these or have multiples of different cycts and in different places? After reading they can come back and cause more to develope I decided not to do surgery, plus I have alot of other issues - tumors - any advise

Could you have neurofibromatosis? Have you seen a neurologist? Good luck.

Hi- I just found out that I have both Ta sacral Tarlov Cyst and a 1.7mm Kidney cyst. I also wondeedr the relation. I have a neurosurgeon appointment and internist next month. I will try to keep you updated as I find out. Unfortunately, besides the burning and excruciating pain in my lumbar/sacram and having urinary/fecal issues and incontinence; I also have cervical spine ddd and a disc replacement from trauma that has to be removed and fused. Tons of other complications (slip and fall with tbi) but I should be able to separate out the tarlov/kidney from the rest for us both. Will let you know what they tell me. Unfortunately, since we are all rare in this Tarlov thing, it sounds like it will be a battle to get them to believe that the Tarlov is the issue in the lumbar. Strange, especially since it has been noted that this can progress into bone degeneration and other serious long term affects. Many positive vibes and thoughts for us all. Keep standing your ground and taking good care of you!

First, I want to put out prayers to all who are suffering from symptomatic tarlov cysts. I was recently diagnosed with large sacral tarlov cysts which the neurosurgeon told me were not the cause of my many symptoms. After many other tests to rule other things out, I felt I needed a second opinion on these cysts, as I had never heard of them before. I will be seeing a second neurosurgeon in May. My most difficult symptom is sacrum/rectal burning pain/pressure all the time. I cannot sit at all without major discomfort. I have various other symptoms too that many of you mention. I have recently started taking CBD soft gels to try to alleviate the pain, but so far I'm not getting relief. What are some you taking for pain management ? Thanks.