Share this:
sherri2022
@sherri2022

Posts: 3
Joined: Feb 05, 2019

Undiagnosed - Debilitating Abdominal Nerve Pain

Posted by @sherri2022, Tue, Feb 5 1:29pm
  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?

REPLY

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.

@sherri2022

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.

Jump to this post

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?

@lisalucier

@sherri2022 – how is your husband doing?

Jump to this post

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. 🙁

@sherri2022

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. 🙁

Jump to this post

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.

@sherri2022

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. 🙁

Jump to this post

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.

@sherri2022

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. 🙁

Jump to this post

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.

@bogobarb

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.

Jump to this post

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

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.

Jump to this post

@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.

Please login or register to post a reply.