Finally A Real Mri Diagnosis

I am now a 71 yr. old female, mostly in excellent health , youthful and very active. For more than twenty years, I have been going to urologists and GYN doctors for UTI 's with non bacterial symptoms, lower pelvic pain and burning with intercourse , jabbing muscle pain around left buttock area and post coital vaginal pain and often bladder spasms after sex. Historically severe constipation and now added lower back pain.

One doctor at Stanford University thought it was IC and put me on the usual Elmiron and amitriptaline, etc, that didn't work. I had lower pelvic floor therapy, tens unit acupuncture at UCSF, practicing kegels, low acid diet, etc.

After my last urodynamics study at the UCSF urology, I was diagnosed with a neurogenic bladder with glomerulations and post voiding urine retention. "No further treatment options from their department, other than self cathertization."
I didn't stop there. I went to see a highly respected GYN doctor in S.F. , told her my story and I asked her if she would order an MRI to rule out any tumors on my lower sacral nerves or cancer. She said, "I will not do an MRI on you." Cutting into your back and looking for compressed nerves is much more invasive and questionable." My best option for you would be to install the interstem device. to block your pain and help you urinate better. "Here is the CD, go home and read about it." I went home and researched this concept and read about all the failures, infections, etc. like a pace maker, you cannot have any MRI's. , etc. I realized that this would be another band aid at my expense with no conclusive diagnosis to the root problem .

I finally went to my bone doctor and told him I wanted an MRI because I was having lower back pain, urinary retention and severe constipation. I wanted to get to the bottom of the problem. Guess what? Yes, results showed two Tarlov cysts, one almost 3.0 CM and the other 2.5 CM at the sacral base.

I have been on line for two days trying to find a neural surgeon, I found Dr. Phillip Weinstein, M.D. at UCSF, right in the same building where they did my urodynamic studies , the dept. that sent me home with no "further options." I have a call into the office, waiting to make an appointment. In the mean time I will also have an ultra sound on my kidneys to see if my urinary retention is causing any kidney problems. I hate, hate, the idea of self cathertization . I don't even think I can bend that far to see what I have to do.

If anyone has had good luck with UCSF's Neurology Dept. for minimally invasive draining of the Tarlov cysts,. I'm so afraid of cutting on the spinal column bone and the 12 to 18 month recovery period. I would love to hear back.

lillie61 lillie61
70+, F
2 Responses Dec 12, 2012

Hi, how are things going? Have you found a doctor who will admit that there are such things as Tarlov cysts that are real problems and can cause real pain and what have you found out?

I, too, have a Tarlov cyst, discovered during an MRI 9/12 after 7 months of buttocks/sciatic pain from a fall on my tailbone over a year ago. I hope that you're able to get this resolved and will follow your posts with great interest. I also am in the bay area.