My sitting pain started 2 years ago. It turned into burning in my rectum and perineum. I've never had a problem achieving an orgasm up until 1 year ago. Numbness set in and I have absolutely no feeling down there except the pain. I have done 2 years of pt and acupuncture with no improvements.
I had a couple MRIs and an MRN a year ago. Never did they mention tarlov cysts. I sent my imaging to Johns Hopkins for a second opinion and that's when the cysts were mentioned.
I have low back pain, unable to sit for long and standing is also painful. I can pain down the back ofboth legs, feet and upper outer thighs.
There's nothing in my imaging except those cysts and a small bulge at l5 and compression of traversing nerve at s1 which most people have according to my doctors.
I'm thinking of contacting dr. F in Dallas. Does he review imaging and then let you know if he feels the cysts could be causing your problems?
Do my symptoms fit this category?
Thank you all

Telvaker,
Please review the website of the Tarlov Cyst Disease Foundation for answers to your questions. I believe that will provide you guidance and support through this ordeal.
"Bridges"

hey bridges - thanks for replying. I have gone on the website you mentioned. I am just so uncertain and my doctors are telling me no to the cysts causing my symptoms/problems. I was just looking for a little insight from those that have been thru it or are going thru it. I don't see many mentioning sexual dysfunction, unless I'm missing it somewhere. I'm just tired (as we all are) of spending alot of time and money trying to figure out what's wrong with me when my doctors seem to put in no effort or care. We rode motorcycle over the weekend and my symptoms lessened. they are back today but for 2 days i was good / basically no pain. i'm so frustrated in not knowing what's wrong. I am leaning towards the cysts or tailbone problems. thanks again - T

Telvaker,
EVERY patient I have consulted with during the past four years has been "assured by their doctor" ,or doctors, that Tarlov cysts do not cause symptoms. While I am not a doctor, I can assure you that these cysts do indeed cause symptoms, including what you have described.
You will need to be evaluated by a medical provider who is experienced in the successful treatment of Tarlov cysts.
"Bridges"

I don't doubt it one bit. It's amazing to me the lack of consideration docotrs have in this area. One told me to stay off the internet. I was stunned and could only look at her in disbelief. Why i didn't tell her instead of telling me to stay off the internet maybe you should get on the internet and read and catch up with science and personal testimonials.

They do not even stop and consider my cysts could be symptomatic. They just tell me they don't cause pain. I told my mom you can't bring up one article on the internet that says that. They all say some can be symptomatic and the symptoms are......pretty much exactly what mine are and those of others that post on forums. I'm so sick of docotors not listening to me.

I'm sure if THEY had a surgeon on staff that specialized in this area they would be telling me a different story. One even told me to see a sex therapist. OMG I wanted to tell her if a sex therapist can give me feeling back in my clitoris and take away all the pain then sign me up.. Good grief.
Thanks for responding I appreciate it. I'm seriously considering sending my imaging to dr. F. I've talked to his office twice now.
Take care

Yes, Dr F will personally reviewed your imaging. When I contacted their office the staff can give you details on the imaging studies Dr F requests to see. They also gave me the option of a (free) phone consult instead of flying in for an office visit.

I am not a doctor but your symptoms sound like they fit the profile including the issues with sexual dysfunction, pain, numbness. Some people also have urinary and fecal incontinence, retention, and control associated with these cysts, but that isn't discussed much openly either, probably due to the private nature. Dr F and his staff went over all of that and more during my initial assessment.

On the point of the quality and types of MRIs, I had several MRIs and the 3 Tesla high resolution MRI with Gadovist contrast agent of the lumbar and sacral spine showed the most. On the imaging Dr F could make out at least five cysts, and thought there could possibly be more. In surgery, it turned out to be 8 cysts, one wrapped around my S5 vertebrae, and a few others that looked like one cyst were actually two.

Hi Telvaker, I share your pain and concerns. I have been dealing with this TC-related pain since March this year. Back in November 014 I was diagnosed with mild hip bursitis and was given a cortisone shot that did nothing. Did PT, went to chiropractor only to find more pain. I requested my orthopaedic doctor an MRI. She insisted that that was not necessary and I insisted that I was the patient and the one suffering. MRI showed mild bursitis and the presence of multiple tarlov cysts on S2-3, the largest on the left 2.3 cm and the largest on the right 2.7. She said not to worry about cysts because they don't cause problems. I believed her, but started to inquire about the nature of these cysts. The sole idea of having in my body something that didn't belong there made me worry. In January my hip pain disappeared and I started to have all sort of urinary problems and severe related pain. Saw a bunch of doctors, urologists, urogynecologists, gynecologists, vascular surgeons, etc. to find that I had nothing in that department. I March urinary problems subsided and I started to have severe, SEVERE, low back pain. I saw again my orthopaedic doctor and again, TC are harmless. Not believing anymore what she said, I went to back specialists, neurosurgeons, and a pain specialist--all in Boston. They all agree that TC were nothing to worry about and that they were asymptomatic. One back specialist said that in my case these TCs weren't compressing any nerve. Another back specialist (dr. Saechim Kim) said, "No one operates these cysts and no one should". Neurosurgeon from Beth Israel (dr. papavasilous) said that my cysts have been always there. At first my pain specialist said that they grow so slowly that the structures around them have enough time to accommodate without causing pain. She treated my for Sacro Iliac Joint Dysfunction and gave me two SI Joint Steroid Injections. The first one, on June 9th, brought my pain down from 10 to 6. The second one, four weeks later did nothing. In fact, after injection I have been miserable. Now pain specialist admits that perhaps cysts grew and pressed structures around. I have very bad pain in the sacrum, no numbness or tingling. Sitting down and sleeping on my back are two things I took for granted before, now these two cause unforgiving pain.
I have done a lot of reading on TC, both from social media and professional articles. The first time I saw the name of Dr. Feigenbaum in TX, I was suspicious. I thought "what if he is a money maker" etc, etc. The more I read, the more I believe he is the only in the US who has devoted his professional life to understand and improve surgical techniques to operate TCs. Recently I came across a British newspaper that talks about a Dr. Adrian Casey in London who has conducted three surgeries on TCs and has been in communication with Dr. Feigenbaum.
I will continue with my pain specialist (have my next appointment this Friday), but I am in the process of putting together the application for a phone consultation with Dr. F. I was told that the waiting list now is 5 months and that all the patients before me are all TC patients. I continue to read, testimonies and journal articles. I am in pain, trying to juggle my everyday obstacles. I have cried oceans, like probably everyone in my situation, but I am not going to sit and do nothing. I am so much looking forward to the time Dr. F calls me to discuss my case. I wish you the best of luck.

Claudia i encourage you to consult with dr. F sooner rather than later. Doctors have no answers for u as to where your pain is coming from I bet. The one thing I know for sure is that I have multiple Tarlov cysts, that is confirmed. People who have these all have comparable symptoms. We know each other only thru the internet so what is their response to that? If these hospitals had surgeons that could perform the surgery you can bet they would admit the cysts cause pain. My pain has increased dramatically and I wish I would have taken his next appointment for surgery but our daughter gets married October 24th and I was worried about my recovery time. I know the recovery process takes years but I was worried about being laid up for her wedding. I feel as though my entire body is being pulled apart. It's so beyond painful I can barely handle it. I never dreamed the pain could get worse but it sure does. My dr never told me I had these cysts. 16 months after my initial MRI I sent my imaging to Johns Hopkins and they told me. If I had not done that I never would have known. I am so beyond angry that I have suffered for 2 years longer than I should have and volumes of damage has been done. I can't have the surgery fast enuf and that's when u know u have made the right decision I think.
I was so worried about the outcome because I was getting by. Now things have changed and it's getting almost impossible to function and work. I never had that before. People were shocked that I could still worked and I was soooo thankful that I could. Now I'm scared
Keep us posted on your journey and keep in touch

Hi Telvaker,I am sorry to hear about the status of your pain. It must have been a hard decision to postpone the surgery.
I am putting everything together to go for the phone consultation, although I am also considering going there (from Boston) for a personal appointment with Dr. F. Last week I filled out a survey from the Tarlov Cyst Foundation, and where they asked me to put a pseudonym, I put my full name and contact info. The next day I got an e-mail from Reta Honey, the President of the Foundation, and she asked me if I would like to talk to her over the phone. On Thursday I spoke with her for more than an hour and she gave me important information about TC such as pain management, PT, etc. I can't thank her enough! If you haven't talk to her, perhaps you should try to do so. I may talk to her again soon.
Well, it may be that now things are moving faster in this part of the country. Last Friday I had my appointment with my pain doctor (assistant professor at Harvard) and for the first time in months she is admitting that TC may be the cause of my pain and discomfort. On Tuesday I am going for my third steroid injection, as the previous two did not do all the work. I know that steroid injection "may" trigger CSF into the cyst, but I have no choice, because I need to work now that I used all my medical leave. I told my pain doctor I was going for a second opinion. In fact I am educating her about the existence and expertise of Dr. F and of Dr. Adrian Casey in England, who also operates TCs using Dr. F's technique. She looked at me, took notes and then encouraged me to get as much information as possible before opting for the surgery. It is what I am doing now as I wait for my appointment. I stopped PT because it was giving me more pain. This was a good decision because I was told that PT and any stretching exercise is detrimental to my condition. I am now managing my pain by taking gabapentin (twice a day 600 mg and 900 at night) together with Oxycodone (10 mg three times a day) and aleve. My pain now went down to 4 (?) but there are bad days where I feel no hope. I also walk very slowly and practically don't bend. I sleep on my stomach and rely a lot on ice packs. Now it comes the fight with the Insurance Company (I have Blue Cross Blue Shield). I have no clue as to how much the operation costs (I have heard $30,000, but I am not sure if this includes F's fee. Anyway, you already crossed this insurance path, don't want to bother you with mine.
Because I am still scared about the surgery and about the success rate that Dr. F has had, I am asking some relatives in Europe to do their own investigation with neurosurgeons over there. I want to make a well-informed decision and between now and the time I get to see Dr. F., I have plenty of time to read and listen. I will keep you posted. Wishing you better days!