Undiagnosed - Debilitating Abdominal Nerve Pain

Hello @sherri2022, welcome to Mayo Clinic Connect. Can you ask your husbands neurologist to give your husband a referral for an appointment at Mayo Clinic? I would contact one of the appointment offices and talk with an appointment coordinator. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

There is a discussion that might be helpful to read here:

Groups > Visiting Mayo Clinic > Your Tips on How to Get Off to the Best Start with a New Specialist
-- https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

I wouldn't worry about getting into Mayo Clinic without a diagnosis. That would be the primary reason for going to Mayo Clinic - to have the Mayo Clinic doctor teams come up with a diagnosis and a treatment plan.

@sherri2022, there is also a discussion that might be helpful to meet other members discussing abdominal wall pain here:

Groups > Chronic Pain > Has anyone been diagnosed with Abdominal Wall Pain
-- https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-abdominal-wall-pain/

Thank you so much John. I'm not even sure it is abdominal wall pain but without any abnormal test results there isn't much to go on. I will check out the groups you mentioned. Thanks again.

Glad to help. I would definitely call the closest Mayo Clinic Campus and talk with an appointment coordinator. Hope you find some answers soon.
John

@sherri2022 - how is your husband doing?

Hi Lisa. He is in pain daily. From what he tells me the pain level is 3 on a daily basis. On the bad days though its a 9/10. He seems to have the bad days about 2 to 3 times a week. The last nerve injection he received was on Jan 2nd but this time it doesn't seem to have any affect at all. I read somewhere that after the 2 or 3 shot if there are no results then there should not be a 4th. I'm not even sure this is an abdominal nerve pain issue but all other test (now over 18 months old) show no abnormal results. It is a daily struggle with no help or end in sight. 🙁

That is really rough, @sherri2022, that your husband's pain is 9/10 on bad days, and that that happens about 2-3 times per week.

I'd also love for you to meet @gailb @artscaping and @mamacita, who have some familiarity with pain and may have some thoughts as you progress through this nerve injection therapy in his lower back and try to get him some relief from the abdominal pain, nausea and headaches.

Is the exploratory surgery still being suggested as an option by your husband's doctor, or what does he or she propose to try next if the shots are not providing sufficient pain relief?

Sherri, Just wondering, do his MRI's happen to note perineural cysts or Tarlov cysts on his spine? I had years of horrible abdominal pain and headaches, and all the doctors said all the tests were normal, and the cysts were nothing, and there was nothing wrong with me. When it got to the point where I was having trouble walking, I started researching these cysts and found that they are not nothing. I have Tarlov Cyst Disorder, affecting my whole spine for many years. This led me to be able to get genetic testing, and revealed that I also have Ehlers Danlos Syndrome. The abdominal pain and headaches and other symptoms are related to both. I'm guessing that many people go undiagnosed because these are considered "rare" diseases. Maybe your husband is one?
While there is no magic cure, there is treatment, and having a name for this is so validating. It's awful, as you know, when people tell you you're fine and you know you truly are not. I wish you both the best.

I’ve been dealing with this also. I just had my second RFA, hopefully it helps. I know it’s dehabilitating but hang in there and keep seeing for answers.

I’m in the same scenario-for 15 years. I had a splanick Rfa which helped for over a year. Now I’m needing another one.

See if there is any mention of Tarlov cysts, also called perineral cysts on any of his radiologist reports from MRI's. CT scans, etc. They are most common in the sacral area but can happen anywhere on the spinal cord. If he does have some it could be that they are pushing on his sacral nerves and causing his pain. If he does have them don't take no for an answer. Doctors will tell you that they don't cause issues because that's what they were told in medical school, and therefore, never learned anything more about them. They most certainly DO cause issues and terrible ones! I'm not a professional. I'm just a person that has the same type of pain (but I'm female) and I have these cysts. Just thought I would throw it out there as a possibility. Good luck to you both.