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.