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ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Posted by leet3415 @leet3415, Mar 28, 2019

Hi. Quick back story. In Nov 2018 I had sharp pain in the top middle of my abdomen right below my sternum. Pain level 10 of 10. They thought it was my gallbladder, had it removed. Still had pain. multiple ER visits, hospitalized 2-3 times for a week each, 20 plus doctor appointments, over 100K spent in medical costs billed to my insurance.
As a last resort, went to Mayo and was diagnosed in under 30 minutes.

In January 2019 had my first trigger point injection, just had my 2nd injection March 2019. Still in a lot of pain. Taking gabapentin as well. **Has anyone else been diagnosed with this AND what are the symptoms & treatments you are receiving? Are you finding any relief?**

Interested in more discussions like this? Go to the Chronic Pain Support Group.

jgroudan | @jgroudan | Sep 17, 2021

I'm doing amazing. My wife thanks Dr Gillespie for giving her husband back to her!

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saolson | @saolson | Sep 17, 2021
In reply to @jgroudan "I wish you God speed. I am feeling wondeful. Had me follow up with Dr Gillespie..." + (show)
@jgroudan

I wish you God speed. I am feeling wondeful. Had me follow up with Dr Gillespie today and I am doing GREAT! Not to suffer with this pain any more is a miracle!!

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Over the years my wife and I have gotten our hopes up by Dr’s many many times including by my primary, by various well-respected “specialists” and by Mayo only to have our hopes crushed. Eventually each of them literally shrugged their shoulders (I kid you not) and suggested, “counseling”. One Specialist ordered a bilateral transforaminal thoracic injection to my T9 which was performed but has never contacted me to see if it worked. Go figure! We certainly have our hopes up again for sure. Thank you very much.

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jgroudan | @jgroudan | Sep 19, 2021
In reply to @mmoss "Hi Amanda, Thank you for the information. My pain is a burning in the lower abdomen...." + (show)
@mmoss

Hi Amanda, Thank you for the information. My pain is a burning in the lower abdomen. It is not a sharp pain. It does not hurt when touched. When I move it doesn’t move or radiate. I was an extremely health vibrant women prior to this pain. It came out of nowhere. I am now in pain management and hate taking these drugs for pain. Do you have any suggestions of a Dr that might be of help? I tried to get into a Mayo Clinic but they said abdominal pain is too unspecific and there was a 3 month wait. Any suggestions would be extremely helpful. Thank you. Michelle

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Hi Michelle, I was just had robotic laparoscopic surgery for ACNES at St Joe's in Phoenix by Dr Thomas Gillespie. He cut three nerves in my lower right quadrant of my stomach. Went home same day. I am finally cured of this horrible pain. Thank God for Dr Gillespie and his team. He does take new patients. Great surgeon.

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jgroudan | @jgroudan | Sep 19, 2021
In reply to @rt061069 "@lasirvent So did you get tested for MALS and did you have then a surgery/procedure. I..." + (show)
@rt061069

@lasirvent So did you get tested for MALS and did you have then a surgery/procedure. I havent been checked for that yet but I do think there is one doctor in STL that deals with MALS. The pain for the first year was navel to xiphoid process, constant pain and aching but no problems with nausea or bathroom issues. Then around the 16 month the pain extended down to pelvis. Mornings are the worse once I awake after say 5-7 hrs of rough sleep I go to the bathroom and pain is terrible right afterwards. I have the pain when I awake but most mornings after the pain from navel to pelvis is 8.5, its slowly then adds a lot of pain up the middle to xiphoid and makes a ridge of pain below the rib line. I have pain both above and below navel that take turns on who wants to be the worst pain. My next block by new pain mgt doctor is in two weeks and it will be ilioinguinal and iliohypogastic. Those were done with steroids after my first injection that was just the numbing medicine. That was 16 months ago, it helped after a day for say 48 hours of 80% less pain, then it came back. They then tried other blocks but not celiac or splenic block. Celiac would be the next block to try. Then I guess Mals, I just can't find a script that provides relief of really any kind, I wish taking a 10mg Hydro, Oxy, antidepress, gabapenin or lyrica helped but they don't. Did you every find a drug that helped?

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It sounds like you may be suffering from ACNES. First need to take the Carnett Test, second find a pain doctors who will give you trigger shots for TEMPORARY relief and Third and the most difficult find a doctor who will surgically kill the nerves causing the pain. I had the surgery on 9/2/21 at St Joe's in Phoenix by Dr Thomas Gillespie done Robotic Laparoscopically. Went home same day and am now pain free. Thank God for Dr. Gillespie and his team. I believe he is the only doctor in the US to use this technique. Best of luck!

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jgroudan | @jgroudan | Sep 25, 2021
In reply to @saolson "I agree. I have been in extreme pain for several years. Mayo performed TPI as well..." + (show)
@saolson

I agree. I have been in extreme pain for several years. Mayo performed TPI as well as at other Dr’s. I have undergone countless TPI’s, a bilateral transforamenal injection to my T9, endoscopy’s, endoscopic ultrasound at Abbott, undergone thoracic Prolozone injections, neural therapy injections and not a single thing has helped. Mayo has offered no help other than to take counseling to manage the pain. Easy to say when it’s not you in the hurt-bag. I don’t need counseling. I need a medical procedure as Dr. Sweetser says. Once a nerve becomes entrapped my experience is that it doesn’t suddenly become unentrapped. I have a appointment coming up with Dr. Gillespie in Phoenix. Look at some earlier posts for more information

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My robotic Laparoscopic surgery on my ACNES was a total success! Dr Gillespie cut T8,9 & 10. Don’t remember when I last felt this full of energy. Best of luck!

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1 reply
saolson | @saolson | Sep 25, 2021

Jeff, I can’t tell you how grateful I am for your encouraging comments. Hallelujah for you! I am sure you went through many months of abdominal pain. I can’t imagine what that would feel like. Enjoy your new-found freedom. How does it feel to get up in the morning without being in agony?

MNGI diagnosed me with AWP on June 1, 2021 and also reported a positive Carnett test on me. I have undergone multiple trigger point injections including at Mayo. In 2021 I underwent 3-celiac plexus blocks I have had multiple endoscopy’s including a endoscopic ultrasound performed by Abbott-Northwest in Mpls. The only medication that touches this is 2.5-mg of oxycodone which I absolutely despise.

My appointment on Oct. 8 is now less than 2-weeks away. Yesterday I had my records from 7-health care providers fax’d to Dr. Gillespie and I have all my MRI’s, CT scans etc on discs ready for Dr. Gillespie. His appointment gal, Bethany thought that because we are traveling a long distance and because I am in overwhelming pain moment by moment he might be able to perform the surgery soon. Yesterday I spoke with his MA, Mitzie. Unfortunately, she said he is now scheduling surgery for December. Gosh, I cannot imagine this pain going on for 3-more months. If you see Dr. Gillespie feel free to tell him of our visits. I need all the referral I can get. In the meantime please keep me updated often on how good you feel. Thank you!

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saolson | @saolson | Sep 25, 2021
In reply to @jgroudan "My robotic Laparoscopic surgery on my ACNES was a total success! Dr Gillespie cut T8,9 &..." + (show)
@jgroudan

My robotic Laparoscopic surgery on my ACNES was a total success! Dr Gillespie cut T8,9 & 10. Don’t remember when I last felt this full of energy. Best of luck!

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FYI; my name is Stuart Olson and my wife and I are traveling from Minnesota.

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1 reply
jgroudan | @jgroudan | Sep 25, 2021
In reply to @saolson "FYI; my name is Stuart Olson and my wife and I are traveling from Minnesota." + (show)
@saolson

FYI; my name is Stuart Olson and my wife and I are traveling from Minnesota.

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Hi Stuart, Besides being a GREAT surgeon Dr. Gillespie is a total compassionate individual. I wouldn't be surprised if he squeezed you in earlier if at all possible. I am feeling amazing - pain free and full of energy. Just got back from a hard set of tennis. Jeff

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2 replies
saolson | @saolson | Sep 25, 2021
In reply to @jgroudan "Hi Stuart, Besides being a GREAT surgeon Dr. Gillespie is a total compassionate individual. I wouldn't..." + (show)
@jgroudan

Hi Stuart, Besides being a GREAT surgeon Dr. Gillespie is a total compassionate individual. I wouldn't be surprised if he squeezed you in earlier if at all possible. I am feeling amazing - pain free and full of energy. Just got back from a hard set of tennis. Jeff

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Jeff, Dr. Gillespie has certainly gained your admiration. I sure hope he can squeeze me in before December. I would fly back anytime he can do it. All this, of course depends upon Dr. Gillespie determining that I am a candidate. His nurse already asked him and he said he thought that, based upon my history and treatments I am a candidate. Have a great pain-free day. Stuart

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saolson | @saolson | Sep 25, 2021
In reply to @jgroudan "Hi Stuart, Besides being a GREAT surgeon Dr. Gillespie is a total compassionate individual. I wouldn't..." + (show)
@jgroudan

Hi Stuart, Besides being a GREAT surgeon Dr. Gillespie is a total compassionate individual. I wouldn't be surprised if he squeezed you in earlier if at all possible. I am feeling amazing - pain free and full of energy. Just got back from a hard set of tennis. Jeff

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Jeff, the pain in my upper abdomen is always present but the level of pain gets overwhelming almost always when I lay on my back. What were your experiences?

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