ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Hello, @kdpetti ... I hope you are much better! I am an ACNES sufferer - 4 years left sided pain. Tests, shots, trial of implantable nerve stimulator, nothing helped. Did you get to see Dr. Gillespie? I am considering going to him. Thank you.

Hello @susanders
I had my surgery April 28th of 2022. Best day of my life so far. I had spent 3 years with ACNES. Like you, injections, tests and so on. I was told many times that this was a psychological issue as well. From the moment I woke up from my surgery I have not had any nerve pain what so ever. Dr. Gillespie and the team at St. Joseph's do exceptional work. I highly recommend you follow this route. It cost me $26,000 CAD as I had no insurance and I would do it all over again. I also would suggest physiotherapy as having ACNES that long, your body will need to recover. That will take a little longer, of course.

Best wishes for a speedy recovery,
Ben

Hello @benacnes
That is great news! I am thrilled for your successful surgery.

Can you please clarify what you mean by a body needing to recover and needing physiotherapy? What is your experience with this post-op?

Thank you,
Susan

Hi Susan,
Thank you! It changed my life. As for post-op, the surgery itself wasn't bad at all. I did physio as I had been all contorted from the pain for so many years. My right side was so weak from protecting it.

Ben

Hi! I've had my right side done ,
T8-11 and am completely pain-free ! Dr Jafari is going to do my left side on the 28th and then the Radio Frequency Abalation
will be next
Everything is done in steps bc it's not good for your liver to have too much steroids in your body
I don't know who your pain management doctor is bui all Dr Jafari's procedures are done at their Surgery Center.
I then will be scheduled for Radio-frequency Abalation.
I'm so excited about being pin free soon! It's been a long 4 years on suffering and .ot being able to enjoy life!
Thank you God!
I wish the very best on your journey! Where are you having your procedures done?
God Bless 🙌
Victoria

Hi, me again.
How will your doctor know which nerves to sever? That is why Dr Jafari does the blocks first to be able to isolate which nearest affected
Victoria

Hello, Victoria,

Thank you for your email. I am so happy for you that your right side is pain free! Do you mean that the procedure you had on your right side that left you pain free is radio frequency ablation?

Where does Dr. Jafari work and where were your procedures done?

Thank you,
Susan

Hi Ben,

Thank you for explaining why you had physio. I understand now. If you have any other thoughts about side effects of the surgery, please let me know. Again, thank you for your time and for caring.

Susan

Hello Susan,
I'm glad to be able to help! I guess the only thing I could add would be that I have some superficial numbness to the right of my belly button. Muscle function is normal. For me it was a miniscule price to pay to be ACNES pain free. Are you a long distance from Phoenix? Drm Gillespie and staff are very friendly and helpful. Once you have your initial appointment you won't be worried.

Ben

Hello Susan,

No because Dr G is a surgeon and needs to know what nerve and where the issue is before being able to surgically repair. I believe I have an entrapped nerve what nerve is a matter of debate. I too have had nerve blocks with no relief. Lyrica has helped but I cannot sit or bend over. As I type this the pain is left side slightly lower than the belly button. I stumbled across the PUDENDAL nerve and this could be the culprit. I am coming off Lyrica to try Calmare Scrambler therapy, look it up. I will see a neurologist regarding the pudendal nerve. You can email me directly if you'd like, kdpettin@live.com or find me on Facebook and connect that way.

God bless you,

Kenji