Hi, I was wondering if anyone is out there has had the surgery with Dr F. for these cysts? I am looking at having the surgery and was wondering what your outcome has been, are you still in pain? etc... Is it worth doing?

Hallo Christl! I'm from Croatia, Europe, also looking for the same answers, if you want contact me....

Hallo! HELMAR 23 I would like to contact you. I'm Anselm a from Croatia and have 3 Tarlov cysts in my sacrum, looking for someone's experiance with AIMIS. Please get in touch, regards...Anselma

Hi, I had surgery last year 5 August in Cyprus by Dr Feigenbaum. I'm feeling relatively well; back to work since March, not on any pain meds. Anyone who like to talk to me about the surgery, please contact me on helena.gourley@yahoo.com.au

Hi Christi, I haven't had the surgery but did have a consultation with Dr.Feigenbaum in May of this year. I have 3 confirmed cysts at S2. I have also been in communication with the Tarlov Cyst Foundation and would encourage you to call the Executive Director. She speaks very highly of Dr. F. And her knowledge of this condition is amazing. She is an RN, nurse educator. I was impressed by the fact that Dr. F didn't want to operate on me immediately. Based on his exam of me, we decided to wait. My symptoms aren't overly severe at this time and I hope it stays that way. I figure any surgeon who doesn't want to cut right away unnecessarily must be a good dr. I would urge you to at least have a consultation with him. I think he will even do one over the phone if you aren't in KC or Dallas. My plan is to wait about a year and see how things go. Obviously, if any of the really bad symptoms show up I will be back in his office sooner. I really hope this information helps. Keep me posted.

Hi Robinmarie, I uploaded my mri to Aimis, and Dr F then rang me regarding the results and to discuss my symptoms. He recommended surgery and I am now booked in for surgery on 4th Aug. I am from New Zealand, so it is going to be a long trip. I have purchased the "tush cush" to help with driving and travelling. I must add, that this "tush cush" is a life saver! It makes sitting a lot more bearable now and I highly recommend it. Thanks for replying and for your info. I will post back here once I am back home from Cyprus (surgery there). I hope for you Robinmaire, that your symptoms do not get any worse, and you would be ok. :0)

Hi Christl, I live in Leawood, Kansas. The interesting thing is that my boss is from New Zealand. I don't believe that Dr. F would recommend surgery unless it was necessary and I regret that you have to have it. Although I believe it will turn out great. You deserve relief. I have several tush cushes. You are so right, they are wonderful. I am sorry you have to travel so far because I know it is very uncomfortable. Please let me know how your surgery goes and how you are. I will be sending positive, healing thoughts your way.

Christl, How are you doing after your surgery? I hope you are doing well and feeling stronger every day. Please let me know how you are when you feel up to it. Robinmarie

Hi robinmarie, I am doing really well. It's soooo lovely to be home now though. Op went extremely well. Dr f found a fourth cyst which he also took care of. I am so very glad I had the op and wish everyone was able to have it. I also met 5 other ladies who had the same op. Fantastic people!! Dr f and debbie took very good care of me and I cannot praise them highly enough. The constant pain has now gone, and I only have post op pain. Though, if I overdo things the pain can worsen, but that is perfectly normal and to be expected. It took us 30 hours to get home so I am still a bit jet lagged. I hope your pain does not get any worse. Take care. Christl. :0)

Christl, This is such great news! I can only imagine how wonderful it must be to be home. I'm amazed by your extremely long journey. You must be a very strong person to accomplish that. Everyone that I have communicated with about Dr. F and Debbie have said the same thing you have. This is so comforting to me in case I need the surgery down the road. I'm doing a lot better than eight months ago but I still have some pain and have not ruled out the surgery. Take care of yourself and I hope you will continue to update me. Thanks for sharing your experience. It has made a huge difference in my perspective. Robinmarie

Hi robinmarie. Just a quick update. I am doing well and often forget to take my pain meds. Which just goes to show how well it's going. Though I must admit when I overdo things I certainly pay for it. It can then take me quite a few days to recover. However all in all I am a lot better than before the op. Slowly but surely :0) So, how are you doing? I often think of you and hope like crazy things are not getting worse. Just be extra cautious when you bend or lift things. As I found bending to be a massive trigger for the pain. Take care. Hugs :)

Hi Christl, I am so glad to hear that you are doing well. Today is November 29. How long has it been since your op? About 4 months? I am planning to have an MRI of my whole back after the first of the year. The first one I had was of just the lower lumbar spine. I have this pain that radiates around my right side at the waist. Dr. F thinks I could have cysts higher on my spine. I need to find out what's going on. Depending on what it shows or if the others have gotten bigger, I will most likely have the surgery. I haven't had surgery before and I am very nervous. I am confident though from what you have said that it might be the best choice. Please let me know your words of wisdom. I agree bending is a trigger and so is sitting too long. I've got a standing desk at work that really helps. Take care and let me know how you are and any advice you have. Robinmarie

This message is for RobinMarie: I hope you see this, because I too have Tarlov cysts and am planning on sending my MRI to Dr. F. My symptoms are not too severe, but I have had to give up going to the gym or going for walks because of the pain that follows. I was wondering if we could compare notes, because I am curious as to what your symptoms are and to what degree the pain would be (or not be) that would warrant Dr. F. advising you to wait on surgery. This information would be extremely helpful for me. Thank you so much. Gail

Hello, My name is Melissa and I have five Tarvol cyst on my spine. some lumbar and thoratic. A lot of pain and this is all new for me. The pain goes around to my right side also. This is why I had to have a MRI. My doctors say they won't touch me and no one else will. It is something I have to live with. They range in size 5mm to 8mm. Any information will be helpful or where you don't feel alone. Thanks.

To Mking64! There is a hope for all for all of us suffer from Tarlov Cysts. Search for Tarlov cyst foundation, learn about your disease and you will find a solution. In one point I thougth there is no solution, also, than I sent my MRI to dr. Feigenbaum and he said he can do the surgery. Investigate.....greatings from Croatia, Anselma

My question is there is no way that I can afford to fly down to see Dr. F.,so does anyone else know of any other options?

Teresa69 Have you tried lidocaine? I have a gel prescription 5%. I take a warm bath and make sure my sacrum is immersed in water for 10-20 minutes just relaxing. After I dry off i squeeze about 1/2 inch or so of lidocaine on my sacaral area. Butt crack to small of back and outwards towards my sides. I feel the warm water opens my pores and allows the gel to penetrate deeper and longer because I do it early evening. In the morning when I shower for work I really do not scripts that area either just let the gel stay there. It's not greasy at all really. It has worked wonders for me and I hope u can get some relief with that. If u have cysts in other locations rub some there too. Some people even get lidocaine patches but u can only use them every 12 hours so I prefer the gel What symptoms do you have ? Take care Theresa

Hello, I saw Dr. F this last week. I've gone 4 years with sacrum pain and was told in 2013 that my Tarlov cysts were not causing problems according to a radiologist. he was the first to even note them. Now that I've seen someone who knows something about them, we are looing at them. I'm hardly holding on to my job and my quality of life sucks. I walk around with an ice pack tied to my sacrum and take drugs as needed. Dr. F. told me have a block at S-2 and see if it helps to determine if this is my problem. To me, it seems in the absence of anything else and given the symptoms line up perfectly, that it must be my problem. My pain doc says just because a block doesn't work, doesn't mean its not my problem. I would prefer the risk of surgery over a lack of quality of life . Has he required the blocks for other patients.

Hello? Is anyone still on this forum? Does dr f still accept patients? Where is he located? And do these cysts get worse or stay the same? I'm kinda freaking out with this diagnosis

@Lynnsha,I was diagnosed 7 months back.. still managing pain through PT. I did freak out for first two months - so I guess its normal. I've been following the thread here and also hoping to avoid surgery. Many of them here seem to go couple of yrs before the symptom gets worse..I dont know if the cyst stays the same or grows over a period of time. Also, what cause the growth of these cysts? My pain is localized to legs so far. How about you?

Dr. Frank Fagenbaum has a website you can check out and then you can contact his office. He will do a phone consultant and you will send your records to him. He is in Dallas, Texas. My pain management would not cooperate and do the block. He even offered to speak to them. Many doctors do not have a great deal of knowledge about Tarlovs. Dr. F. Is one of few that do. Reach out to him. You can also contact the Tarlovs Cysts Disease Foundation and they can provide information as well. Unfortunately, I even had one doctor tell me that he would refuse to listen to anything they said because why does a cyst need a foundation. You have to be your own advocate. Remember before doctors we're reducated on MS they thought it was all in people's heads. The Tarlovs Foundation is partnering with Harvard for at least one study.

This is for anyone that has had surgery. I just had surgery 3 weeks ago and am in so much pain. My legs still feel numb and neuron at times and my buttocks hurt all the way down the back of my legs. I can't sit for more than 20 minutes. I know they say this is normal but I'm really worried this won't go away. Any info is much appreciated.