Tarlov cysts
 

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

Questions about Dr F.
 

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.

So the general opinion is to stay away from pt and chiropractic work right? I noticed after my latest pt this past month my legs do feel worse.
I have scheduled a chiropractic appointment to see if some internal manipulation on my tailbone would help since I really don't know if my problem is my cysts or my tailbone. Even though I am leaning towards the cysts since reading numerous stories.
It's so hard to know for sure. I just wanted to try everything before I addressed surgery. I've talked to dr. F's office to get some information
Does it normally take so long to get in for surgery? Do most insurance companies cover this stuff? I am going to call mine tomorrow. Also, does anyone know the cost of an office visit with him? I am thinking of flying down there instead of waiting on a phone consult since that alone will take 5 months
I agree with you I hvave a lot of symptoms that match unfortunately.
Thanks for responding

Yes, at least in my area surgery usually takes a few months to get scheduled. Besides, you'll need a pre-op physical and blood work by your primary doc for surgical clearance.

Insurance for the office visit with Dr. Feigenbaum will fall under whatever your policy covers for an office visit with a neurosurgeon. Depending on your insurance, you may need a referral and coverage maybe different for in-network or out of network doctors. I have Medicare (due to long term disability) and a BCBS PPO, and it was my normal office visit co-pay.

The staff won't schedule your surgery until it's cleared by your insurance. It will depend on your insurance policy how much is covered. (My policies usually fully cover surgeries and hospitalization, so I'm not expecting much of a bill if any.)

If you are going to Dallas to see Dr. F, the office staff can send you a list of local hotels nearby that they have pre-arranged special room rates for patients. Most have complimentary shuttles too. I suggest checking TripAdvisor for ratings. I can't make any recommendations on the hotels nearby as I ended up staying near friends about 15-30 minutes dependent on traffic. I can say the Hilton Garden Inn in Lewisville was well kept and clean and the staff friendly.

With regards to PT, I didn't get any permanent relief of symptoms related to the cysts with PT. I'd avoid internal manipulation of the sacrum. Although it felt good to get my sacrum straightened, it would quickly fall out of alignment and it would aggravate the are in general. My pelvic floor specialist PT eventually stopped messing with sacral alignment because it was painful. She was also the first to clue in I was tender along the sacrum. What did help me some was myofascial release and massage of pelvic floor muscles and tissue but I also have residual tissue damage from a massive hematoma in the area.

Personally, I would stay away from a chiropractor. You do not want to do anything to accidentally damage any of the vertebrae and depending on how severely your cysts impinge on the vertebrae, it could be easy to inadvertently damage degenerated vertebrae further. Many people with the cysts have sacral degeneration that doctors may try to tell you is normal with age, but may be due to the cysts. Dr F is clear about being protective the sacrum and is why he puts a dorsal plate in addition to treating the cysts with sacral laminectomy.

Before surgery and while I was still able, I did aqua therapy to stay in shape. As I worsened, I focused on more gentle activities like floating and stretching in the water to relieve pressure and weight. It's also easier to gently exercise core muscles without stressing the sacrum in the water.

I was told after surgery that Dr F likes the pool for exercise too following return to activity. However, that is a ways down the road for me - post op instructions include no immersion for a month following surgery, no twisting, and they recommend a slow and gradual return to activity as tolerated among other things.

I cancelled my chiropractor who was going to internally manipulate my tailbone. How are you doing tomato Girl? Are you feeling good? When you saw dr. F did you take a current MRI of your sacrum? My MRI is 16 months old and he doesn't like using an MRN which I had done 6 months ago. It stinks cuz now I have to pay for another MRI. I don't understand why the MRN couldn't be used. My doctor and the doctors at Johns Hopkins said this imaging gave a far clearer picture of my cysts. I'm so frustrated. He's the expert in this field but this part doesn't make sense to me.
I made an appointment for June 3rd in Dallas. I just don't want to wait the 5 months it will take for him to review my imaging. Do you recall what he looks at on the imaging what makes you a candidate for surgery? How long did you have to stay in Dallas? I don't know what I'll do if I am not a candidate for surgery. I'm so beat, it's hard to stay positive when I see everyone going about life and they're happy. It's been so long since I've felt genuine happiness. Sorry to be so negative just in a bad place tonight.
Any advice dealing with dr. F or dealing with these cysts is appreciated.

I fully understand your frustration, having been there, so let me assure you that whatever it takes to get your current MRI in front of the eyes of Dr. Feigenbaum, do it! I "lost" five years of my life before he restored my health, so as you may expect I am somewhat biased. However, he has a proven track record, and you must put forth the effort to not only obtain a proper diagnosis but to follow through with the suggestions he makes for recovery.
"Bridges"

I emailed my doctor today requesting an order for a new MRI. I know she doesn't agree with his request as she feels the ones I have should be more than sufficient. I told her I already booked my flight and need to have it done. It's my life and I have a right to get help from whomever I feel I need to. I certainly can't get them to admit my cysts might be my problem. Why is that, does anyone know? What would be the point of doctors not acknowledging these cysts could affect a certain percentage of people?
I am super nervous about my appointment. But, I'm going cuz I can't quit trying to get better

So did dr. F review your MRI done with 3t high resolution and did he find that sufficient to give an opinion as to whether you were a surgical candidate or not?

Bridges- do you know if this type of imaging is acceptable? I'm scheduled for an MRI in the upcoming week but 6 months ago I had the MRI with 3t high resolution but didn't think it would be acceptable

Sorry for the delay in response... I do not know what 3T high resolution is... my MRI's were done with contrast. Ask Dr. Feigenbaum what he requires. Now that you have found a medical practitioner that has the expertise to properly address your condition, do whatever he suggests, so that you can once again enjoy a productive life!

I had an MRI this past Tuesday and have an appointment in Dallas on June 4th. It's hard for me to trust doctors. I've been trying to get answers for over 2 years and it's just not that, it's a lack of guidance from doctors. I understand if they can't figure it out but give some advice get other physicians involved don't just let me walk out the door in tears.
It's going to be hard for me to trust what he says but I will be open to it.

Bridges, I am new to this and TCD and would like to get into contact with you to discuss the surgery you had in 2010. I have tried PM and emailing you but it looks like I do not have access to do such activities.
Elaine

littlelam5,
I sent a PM (private message) but have received no response. I am happy to discuss my successful surgical outcome with anyone. You can also contact me through the Tarlov Cyst Disease Foundation website.
David (Bridges)

Telvaker, how did your appointment go? Did you get some answers?

My recovery is going okay. No surprises so far, and I am very happy for that. Was warned to take it slow and that it would be long. Thanks for asking.

Wished I had seen your post on MRIs earlier. "3T" high resolution refers to the power of the MRI machine, 3T means 3 Tesla. Older or cheaper MRI machines are in the 1-1.5 Tesla range and the image quality is not as good.

A good contrast will highlight the cysts better, and with 3T MRIs you get the best images. Since Tarlov cysts can be small or hide behind each other, it helps to get the best imaging.

i called his office prior because my 3T MRI was the most current and then i woudl not need a new one. His office, surprisingly, said no to the 3T MRI. I think whoever I talked to was confused. I had a current MRI using the 3T but there were added frequences for the MRN (neurography) portion. Anyway, I got an updated MRI before I left. The appointment went OK. I felt he was a little "flip" about some things. I would imagine because he deals with this stuff daily. He said I was a candidate for surgery and they would get the paperwork going for that. I was confused on some portions of the questions he asked. He asked if I had upper back aches, neck aches, sore throat, cough, etc. I said no only to call back when I got home and tell him yes, I had all those i guess I was just a little nervous and this was my new normal. His nurse told me that these would not be symptoms from the cysts??? i was shocked and didn't say anything but then why would he ask me if i had those symptoms. I of course, went to the foundation and found that neck pain is a symptom. I am somewhat confused and stressed
the neck pain and pain between my shoulders & into my upper arms is horrible today which is scary because this has escalated quite quickly. Did you have upper body issues?

Glad to hear you are a good candidate. Not everyone is and it can be upsetting to hear that.

Oh, you got an MRN? That's a good diagnostic I hear. Didn't know about them until recently.

What things did you think he was flip on? Ask away...

It is possible he might have asked those questions because some people get spinal cysts in multiple locations along the spine including near the neck. They are also pretty through in their exam, more so then a lot of neurosurgeon's I've seen. If you think it's significant, it might not hurt to fax him a letter with any questions and concerns you have.

To answer your question, I have upper body issues, presumably because I've had some c-spine compression previously observed and RA. I hope I don't end up with cysts in my neck, but will know to keep an eye out. On Reta's (TC Foundation) suggestion, I am planning to go for a genetic screening for connective tissue disease as many people with Tarlov cysts have diseases like Marfan's which predispose them to cyst formation. My hope is that my cysts were caused by the massive pelvic hematoma I had almost four years ago.

How r u doing? I am very thankful to be a candidate for surgery. I talked with my insurance and was surprised when they told me dr. F is in network for me, what a blessing. I talked to his office on Tuesday and relayed this to them knowing that they will not schedule without insurance written preauthorization which I understand. Like everyone, just hoping to get approved and scheduled sooner rather than later. Our daughter fed married the end of October and honestly would like this done before then.
How r people's recovery times? I understand we r all different but just wondering how people felt after the surgery in general.
Maybe I felt he was flip because he deals with this stuff everyday and to me it was so stressful. I'm not usually a nervous person but I was nervous and maybe a little sensitive.
How are things going for you? Are people who've had the surgery glad they had the surgery?

Hi, hope you got the pm I sent you. Recovery times are long and people can vary widely and fluctuate in their recovery. Dr F says up to 1-2 years of recovery on average. It's also vital to be very cautious about increasing activity. Anything that even gives a twing, don't be tempted to do it. I think my first month went uncommonly well because I was crazy careful. I kept my back straight and the weight off the area as much as I could with a mountain of pillows literally like a bridge between my knees and my mid back.

Then some things happened that set me back in recovery. I am only saying the following as a warning. Make sure Dr. Feigenbaum's office follows your pain care. My post op meds got cut off prematurely by a pain doc who had no clue about the surgery, and when some things happened forcing me to move more than I should have, I got worse. That included being tricked into going too far by well meaning but misguided people who thought I needed exercise, despite being clear to them about Dr. Feigenbaum's instructions for no PT and activity increase only as tolerated. Without adequate pain control I cycled into uncontrollable spasms and then my RA decided to act up.

Right now it's gotten a bit rough like it was before surgery with an unrelenting RA flare on top. Have a much better pain doc who is following Dr. Feigenbaum's guidelines, but my RA flare and spasms just won't quit.

I'm still very glad I got the surgery. Before surgery, I was having all sorts of spasms and quickly losing use of my legs. I figure without surgery, the cysts would have led to full leg paralysis before long. As it is, I'm not sure how much I will regain. For over three years, I was told to "wait and see" while things kept getting worse, because part of it was assumed to be from the massive hematoma I had. At least now I know it shouldn't progress more than it was before surgery.

In retrospect, I wish I could have had everything done sooner. C'est last vie.

I share your pain.
 

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.

Hi Tomatogirl, Happy to hear you had your surgery. Hope your recovery continues and that you are pain free. When did you had the TC surgery? Did your insurance paid for it? I am asking because I am in the process of putting together the paperwork for a phone consultation with Dr. F. God Bless You!

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!