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.

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.

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!