Undiagnosed - Debilitating Abdominal Nerve Pain

Dr. Feigenbaum in Dallas, TX specializes in Tarlov cysts (perineral cysts). He is at Pine Creek Medical Center and he owns the Tarlov Cyst Institute. He has done over 1600 of the surgeries with good success. I was finally diagnosed after many years. Unfortunately, I can barely even walk with a cane, can't sit on my right butt cheek, have peripheral nerve damage along with hyperalgesia & allodynia down the whole right butt cheek & leg and it's spreading into the left side, lost control of bladder & bowel, etc. My husband took me down to Dallas to see Dr. Feigenbaum. Currently my insurance is denying the surgery but we are going to fight for approval. Doctors & apparently insurance companies just refuse to acknowledge that these things cause issues. I just don't understand it.

@bogobarb I absolutely understand. I'm in the same boat as you are only I wasn't diagnosed with anything. For 15 years I was just called a "chronic pain" patient and every time they did any kind of imaging I was told that they couldn't see any reason for my pain. I had a meltdown every time because I hurt so bad and just couldn't believe that they couldn't see anything. Come to find out in 2018 that right from the beginning, after my injury, I have 5 or 6 Tarlov or perineural cysts in my sacral area causing cauda equina syndrome. They are also causing me the low pressure headaches as well. They also found a tethered cord, normally found at birth, but can also happen with trauma. They told me the tethered cord might relieve the pain in my back. I haven't been able to stand up straight since my injury. I understand what you said about validation. I started crying when I finally heard a diagnosis. It feels so good to have someone go over your symptoms and validate it. My husband had been doubting me and so were other people we know. I don't care about the other people but to have my husband finally understand that I'm not crazy and really have been gradually going downhill for a long time felt sooooo good!!

Not sure where you're located, I live in Wisconsin, but I finally went to an integrative pain specialist because I was tired of pain management. Low and behold my doctor had one of these cysts, had the surgery, and actually helped with my pain! She talked to my PCP and pain management doctors and now they wall work together on my care. She is the one that pushed to get things done and is talking to other doctors that are saying the cysts don't cause issues. Also, she prescribed oxytocin troches and ketamine troches. They dissolve under your tongue and work together for pain. They work awesome!!! Best pain relief I've had in many years. She also referred me to one of the doctors that specialize in treating the cysts. I went down to TX to see him and was waiting for a surgery date until last week when I was told that my insurance denied it. Not sure what I'm going to do now. They said there are still a couple things they can do to fight the insurance but I don't want to get my hopes up. Things have been spiraling downhill really fast over the last year and I can't even imagine just sitting around and getting worse. I'm really scared.

@sherri2022 I've had 5 or 6 Tarlov cysts, also called perineural cysts, in my sacral/coccyx area for many years because I was told every MRI and all the tests were normal and they couldn't see any reason for my pain. I absolutely understand your husband wanting to give up because I feel the same way. Nobody really understands what you go through. You may sit around and do nothing but the pain a lone is so physically, emotionally, and mentally exhausting I don't even know how to describe it. You spend every waking moment just trying to make it through.

I was sent to Mayo Clinic after my initial injury and the cysts were never mentioned to me even though they were clearly on my scans. I was just referred back there for follow up care and they declined to let me come saying there was nothing more they could do for me at this time. I called and asked about treatment for the cysts and was told that they have done a couple of the surgeries but are no longer doing them. The surgery is very touchy because if they have not researched these cysts and how to treat them they won't touch you. There are only 3 neurosurgeons in the U.S. that I know of. I went to Dr. Feigenbaum in Dallas, TX and was awaiting a surgery date until last week when they let me know insurance denied it. There are a couple more things the doctor's office can do to fight the insurance and that's where I'm sitting. This doctor has done over 1600 of the surgeries with very good results.

It may help your husband to go the The Tarlov Cyst Foundation website to learn more about the cysts, connect with people here who are going through the same thing, and to also check out Dr. Feigenbaum's website. It gave me some hope when I was at my worst. It really feels good to just connect with people who are feeling the same pain you are and going through the same things. Take care and good luck!

Thank you for the feedback. I'm currently spending most of every day researching doctors, making calls, trying to get appointments. So far, the only doctor who was knowledgeable about all of this was the geneticist who diagnosed me with EDS, Hypermobile Type. And she unfortunately doesn't see patients in practice. She said I'm not a good candidate for surgery because I have vascular issues, I bleed a lot. And I can't get steroid shots because I've also developed glaucoma, likely as a result of the Cervical TC's. Several doctors who've seen me either admitted that they knew nothing about TC's and EDS, or acted like they did but clearly didn't. The cardiologist I saw Thursday stated , oh most of these things are just anxiety. Unbelievable! Hadn't even looked at my MRI's and reports. So here I am, losing the ability to walk, and No one is treating me. It's insane. Again, if anyone on this site knows any sort of physician or PT in Southern California, I welcome the info. Otherwise, my search expands outward at a time when traveling is seriously not my greatest strength. And yes, I'm really scared too.

@bogobarb Go to the Tarlov Cyst Foundation website. There are only 3 doctors in the U.S. that specialize in the Tarlov or perineural cysts. There is one in Sacramento. The other 2 are in Dallas,TX and MD.

@bogobarb One of my doctors has actually had TC's and she happens to also specialize in EDS among other things. She also had a TC and has had the surgery so she really understands what you go through. That alone is priceless! Google Wisconsin Integrative Pain Specialists to find her website. She is located in WI and has patients come from all over the U.S. Don't get the wrong idea about integrative. She uses a mix of rx medications with natural healing. She is so different than any doctor I've had before. She actually read my entire medical history prior to my first appt. and I also sent a letter explaining how I feel about everything. I know it's hard to travel. I had to lay down in the back seat all the way from WI to TX. There was no way I would have been able to fly. Might be worth a try.

@bogobarb Oh my, you are facing some challenges. Are you near San Diego. There is an Expert rated Myofascial Release therapist in Tierrasanta on Santo Road.

Thank you all for the leads! I will research them. Chris, can you tell me the name of the person or place in San Diego?

@bogobarb Brian McDonald. Adjust Physical Therapy, 858 715-3878.

Chris, thanks so much!!