Undiagnosed - Debilitating Abdominal Nerve Pain

Posted by sherri2022 @sherri2022, Feb 5, 2019
  1. I am writing on behalf of my husband. For 2 years he has been suffering from abdominal pain, nausea and headaches. Doctor upon doctor, test upon test to include CT’s, sonograms, MRI’s, blood work after blood work. All are normal yet he continues to suffer. A neurologist said he has a short circuit in his nerves somewhere. He has had three nerve injections in his lower back but they are not helping. We are at our wits end. He is considering exploratory surgery but I’m a little hesitant that if they don’t find something he will shut down completely. There have been so many days that he has wanted to give up. He manages to go to work but other than that he is non functional. I think work is the only thing keeping him going right now. Can we get into Mayo without a diagnosis?

@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!

REPLY

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.

REPLY

@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.

REPLY

@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.

REPLY
@bogobarb

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.

Jump to this post

@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.

REPLY

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?

REPLY
@bogobarb

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?

Jump to this post

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

REPLY
@artscaping

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

Jump to this post

Chris, thanks so much!!

REPLY
Please sign in or register to post a reply.