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Sep 27, 2015 8:53 PM

Hi, I'm new to this and any info, tips would be helpful and appreciated. I cannot find a good doctor who listens and takes the time with me.

Sep 27, 2015 9:36 PM

I have been diagnosed with Tarlov Cyst Disease since 2008 springtime. I remember because the WII was very popular and we purchased one. We were bowling ALL OF THE TIME. My lower back began hurting me to the extent I could hardly get up and down. I was being treated by my family dr who did MRI and found some discs that were slightly bulging but was told in no way could they cause that kind of constant never ending pain. My gp Then sent me to pain management dr who read my MRI and said ahhhh I see your problem. You have Tarlov Cysts. They were mentioned as an afterthought on the MRI. He suggested a number of different spinal injections which being in the pain I was in I would have done ANYTHING to alleviate. He also started me on pain meds which never totally stopped the pain but helped it to be more bearable. The shots would help for 2 or 3 days but that's it. He then sent me to Jackson MS about an hour 45 minutes north of me. He along with a neurologist looked and all 3 agreed NO SURGERY. It was too risky and dangerous. During all of this time I began to experience incontinance and could not walk a block without being wet to my knees. So back to my family dr I went. He tried meds which did not help so he sent me to a urogynocologist (sp). He decided I needed the bladder sling so I went for it in hopes that that would help my other problems as well. Hence it did not help my back pain but did stop the trickle of urine all of the time. Bear in mind that my gp uro dr any that I had seen except for the pain management Drs had never heard of Tarlov Cysts. I did ask them to study up on it but to my knowledge none did. I know this is a very long post but I'm at my wits end. Pm dr has had to change and up my dosages of pain meds since patches creams NOTHING gave any relief. During the course of time suffering with TCs I also had colon cancer. Thank God I went for that regular 5 yr yearly checkup. I wound up having 17" of my colon removed plus added to my list of Drs was a psychiatrist and an oncologist. Sooo I made it with no chemo or radiation and am now on 6 mo checkups. Have had another colonoscopy where they found more polyps but removable without surgery and were benign thank God. They put the spine stimulator in my back and about 2 years ago I stopped using it. Have talked to pm dr about having it removed but he says too risky to have removed. So also during this time pm dr burned the nerve endings on my spine but that didn't help either. Now we will try one last procedure on October 13 where he will cut the nerve endings off my spine. If that doesn't help he then will send me to a neurologist once again. Hopefully he will have studied up on TCs and can guide me in the right direction. I am so very tired of hurting and never getting any relief. Has anyone else had to endure all of this?? Where or what should I do?? #sosickofhurtingallofthetime

Sep 27, 2015 9:38 PM

Welcome to the community. Everyone on here is knowledgeable and helpful. You'll find great support and advice, or an ear to listen. But to best help you, we need to know something about you. Tell us a little about yourself so we know what direct areas you need help with. What are your diagnoses and/or symptoms? What type of doctors and treatment methods have you used? 🙏🌼

Sep 27, 2015 9:40 PM

LadyXpres, my tablet updated your entry as I hit post to mine. Lol Let me read your update.

Sep 27, 2015 9:54 PM

Ladyxpres, blessed your heart, you've been through a lot. There are several on here who have the TC's. I know they'll be able to help you in regards to that. I have pelvic floor dysfunction that affects my bowel and bladder control, as well as affecting my pelvic and thigh regions. I also have incontinence, but they've not mentioned a sling, and its likely because I scar so badly inside and out. But my urogynecologist is doing pelvic floor therapy to help with the incontinence issues. I also have Interstitial Cystitis and that pain affects the treatment. My dad, who's 85, had 18" removed of his small intestines years ago (34) and he's doing well. He f did have radiation therapy. Hopefully you'll not have anything else occur in regards to your cancer. Because of my dad I also get my colonoscopies & EGD's, which I had 3 benign polyps this year (1 at ever).

If you've not found the right doc to help you, research and find a TC specialist for a second opinion. If also ask why the other docs think surgery is too risky. I wish you the best, and know others more familiar with this will help you much better than I can. You'll be in my thoughts and prayers. 🙏🌼

Sep 27, 2015 10:39 PM

I am 42 and lived with chronic pain since 1996, was diagnosed with spinal stenosis a couple years later and herniated disc. In 2012 I believe it was I was diagnosed with fibromyalgia, and RA. Pcp sent me to rheumatologist for confirmation of diagnosis. From there I did physical therapy, pool therapy, and she put me on some meds. Gabapentin, tramadol, amitriptiline, and ibuprofen, which none helped so she tried me on Lyrica and that didn't help either. So from there I was sent to a pain specialist he took x-rays of my back because at that time my back was in excruciating pain anyways found compound fractures in 10 and 11 vertebrae and collapsed disc 4 and 5 but didn't believe I was in any pain so sent me on my way and said I can't help you. So now I am waiting for either my pcp or RA doc to refer me to an orthopedic spine specialist, they sent me there before for my knee and turned out I needed knee surgery so I figure they help me before I'm hoping they can again. So anyway I have no pain meds, therapies are done and no doctor will listen to me or hear me out. I am so sick of my back hurting so bad on top of the rest of my body, it's never ending and I'm beginning to feel there is no relief in my future. I can't take this any more. I'm depressed, irritated, angry all the time and I don't want to be around any one because I don't need them to feel pity or sorry for me. I've also been seeing a psychologist and found I have PTSD due to something horrible happening to me when I was a small child. My life just does not seem worth it any more. Sorry for this being so long, but thank you for hearing my rant.

Sep 27, 2015 10:39 PM

Lady ex , I feel your pain. I had surgery in December for what showed as 1 tarlov but was really 3. My local doctor tried to make me do the shots but the young pain management doctor would not do them, he knew how dangerous they were to the tarlov cyst. But the first surgeon I went to was sarcastic and suggested it was depression. But he said he said he would cut it off! I had to do my own research and found that cutting if off is not how to treat it. Cutting on the cysts only will cause spinal fluid leakage. And messing with the nerves will cause 2 years or more healing From what I have found the only releif for them is what Dr Feigenbaum in Dallas does.

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