Has anyone been diagnosed with Abdominal Wall Pain

My first injections were starting to fade after a year and half. The Dr did a wonderful job. I went back for another round about a week ago. Original Dr was on maternity leave so a young new doctor filling in did the shot. He didn't use guided ultrasound to pinpoint the spot and used blind injection. I don't think he had experience with ACNES injections, He went in from an angle instead directly over nerve, which meant I was really hurting afterwards. This is causing abdominal wall pains. I hope he got lucky and helped and not harmed. About a week will tell the tale. Make sure pain management has ACNES experience and good luck.

Hi there, my name is Carol and live in KC, since your not too far away thought I would give you some info on my docs. I go to KU(university of Kansas) to an awesome pain doc. His biggest focus is pain management without drugs. I also have doc I go to for pain meds. He's a retired OBGYN, so should know lots about abdomen and issues. If you're interested in names and numbers, let me know. The thing about coming to KC for meds is you have to go once a month.

Hi jgroudan - Could you tell me more about what caused your ACNES?

Also, before you surgery, did you try a nerve block?

Thanks,

Tim

Hi Tim,
I can not pinpoint the cause but it was gradual . I did get 4 or 5 trigger point shots by an anesthesiologist over a 4 month period. First knocked out the pain for about 5 days. After that the shots were ineffective. I had the surgery about 3 months after the last shot.
Jeff

Good day all,
I suffered from ACNES for 3 years and 2 months. My pain came on over the course of 2 days and it was so intense I was on the floor in a fetal position. It took about a year before a doctor suggested it could be nerve entrapment. I received many injections over the course of 2 years with some lasting days and others only an hour. I also tried ablation. Out of the 3 times it was done, only once did I receive about 50% reduction in pain for about 2 months. I found my self here and spoke with Mr. Jeff Groudan(JGroudan) who pointed me at Dr Gillespie in Phoenix. I flew down(Canadian) for an exam and then returned 6 weeks latter for the surgery. When I woke up from the surgery the nerve pain was completely gone!! It hasn't returned. That was April 28th, 2022. As a Canadian I had no U.S. medical coverage and paid all expenses out of pocket. That is how bad my pain was. I am currently weaning myself off of all medications.

I wanted to speak about the Carnett test. Over the course of 18 months I, at different times, tested positive and negative. As it turned out I had 2 nerves that could have been the culprit. This may have been why I had different results from tests and injections. Dr. Gillespie cut my t9, t10 and t11.

Wishing you swift relief,
Ben

Hi! Can you share what worked for you? Which doctor helped you?
My daughter has been going through this pain since last 3 years and has 3 nurectomies. The pain keeps coming back after the surgery after 5-6 months. What helped you? What does resection mean? Thanks much.

It is not a resection. Dr Gillespie robotically laparoscopically severed the T8,T9 and T10 abdominal nerves. Left St Joe's in the afternoon cured. Was truly amazing.

I have a 15-year-old granddaughter who has been suffering from chronic, debilitating left side pain for over 18 months. It all started after she had an ovarian cyst removed and she become extremely constipated. She drank gallons and gallons of Miralax because they thought it was all related to constipation. She had a nasogastric tube procedure, which was a horrible experience because she had an adverse reaction to Ativan and her mother literally had to hold her down because she was ripping the NG tube out. After the procedure, she was good for a short time but she got extremely constipated again, more Miralax, liquid diets, etc.

She had an endoscopy done, followed by a colonoscopy at Denver Children's Hospital, and everything looked good with a very small area of smooth intestine. All they said was that she was lactose intolerant (which her mother already knew.) She takes Lactaid as needed. She has had CT scans and ultrasounds done. She has been on high doses of pain-relaxing medications, antidepressants, birth control. Finally started taking magnesium l-threonate for constipation, which was a lifesaver; but she continues to have chronic debilitating pain which is exacerbated by physical activity of climbing stairs, walking too much, and bending over. She also had a stomach-emptying test, which was normal.

After spending a day with her recently and doing quite a bit of walking, she got in the car that I was driving and was literally shaking and I could see her teeth chattering. I asked her if she was cold, and she said, "No, Grandma. That's what happens when the pain gets so bad." It broke my heart to see her in that kind of pain.

The last procedure she had done in December 2022 was exploratory surgery at Denver Children's Hospital. All her organs were normal, did not see any complications, ruled out endometriosis, but feel that maybe her iliac nerve was damaged during ovarian cyst removal. So they gave her a nerve block and six injections. She got some relief for about a week and her pain was down to a 2, but it was short-lived and she is back to pain every single day between a 4-5. If she has done too much physical activity, her pain can hit 8-10.

She has been homebound and cannot go to school because of all the walking and stairs and needs to lie down during the day when the pain gets so bad. She is not allowed to go to any school social activities because she is homebound. She has very few friends who will stop over to visit. Meanwhile, her identical twin sister is thriving and enjoying being a teenager.

I don't know if they've done a Carnett's test or considered ACNES. She has another follow-up appointment today. Would severing some of her abdominal nerves relieve her pain? Any suggestions would be greatly appreciate!

Have you ever thought about stem cell therapy from your own fat stem cells? I have read some great things on this procedure and have a friend going to Kansas facility for her knee, and then they will inject the leftover plasma from the stem cells back into her body which also helps. Here is the link to the hospital that she will be going to. https://kansasrmc.com/

Does anyone know of a surgeon who treats ACNES in the Syracuse, NY area or evem NYC? I keep seeing Dr.Gillespie in Phoenix mentioned; however, I'm trying to avoid traveling so far, if possible.