ACNES Abdominal Cutaneous Neural Entrapment Syndrome

I am a 74-year-old male, I have chronic and acute abdominal pain After a two year period of diagnosis when I have had all visceral sources of my abdominal pain eliminated as possible causes I am now in the care of my local pain clinic.

No painkillers have any effect.

Two injections of cortisone and anaesthetic have failed to give more than a few days of relief.

My consultant is now recommending Botox but is not holding out any hope of long term relief.

Has anybody on this site had any success, experience or comment on this or any sources of research or recommended methods of relief?

All suggestions welcome as life is grinding to a full stop.

Many Thanks Tony

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Hi Tonybee,

I have been in chronic pain for 23 years so understand how you are feeling and am sorry that you are experiencing this. I have to say that they tried to diagnose me with ACNES about 21 years ago and there was no real treatment available at the time. Having lived with it for this many years the Drs have now established that it is actually some nerve issue and I am waiting to find out if I am on a ganglian nerve stimulator programme currently.

My first response is to ask why they have decided that Botox may help.... I have genuinely been around the block so many times but have always been told that Botox is a poison (which it is) and there is a very low positive response to it in pain management.

I am also worried that the diagnoses is a little woolly! ACNES is a "catch-all" that pain clinics use if they haven't got any other ideas. Depending on what pain medication you are on now I would suggest trying hypnotherapy first. I'm not a clinician so my only expertise is that of a patient but if you are not on too many mind altering meds then hypnotherapy may be of use. If you are using any meds like amitryptilene or clonazepam which are playing with the brain functions then hypnotherapy is not a good try (and any hypnotherapist wouldn't actually take you on). The other thing I would try before Botox is acupuncture. I personally prefer to limit the amount of meds I take but sadly I'm on way too many and it has been too long for me to do anything else.

I know it feels like a lifetime but 2 years isn't long enough for full exploration of the issue that has caused your pain, unless you have been very lucky but I have probably spent at least that amount of time having exploratory surgeries and procedures. Please ask the doctors to investigate further prior to intrusive surgery.

It depends on where you are based as to your pain clinic and how it is funded. Was the anaesthetic lidocaine?

I hope this doesn't come across too "airy" or new worldy as I am not really that way inclined but I do feel that unless the Doctors can actually explain the cause of the pain.

I hope this helps - and that you find some relief soon

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Thank you TR66

Ironically I and my wife are both clinical hypnotherapists. I have had some success with sleep scripts giving me some respite but not, regrettably, with pain relief. I must work on some better scripts.

Your advice is very much valued and as my 'Botox' injection is at least four months away I will research that thoroughly before agreeing to it.

Keep plugging away seems to be the only option.

I have an appointment with a Professor in my local teaching hospital on April 3rd - he has eliminated the possibility of any rare hernia or the like so I will talk to him about ganglion nerve stimulator programs.

I would be happier if I could identify a clear trigger.

I don't know if it was Lidocaine, the first lasted 3 weeks, the second 5 days!

Your support is very welcome

Tony

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I don't come onto this forum very often but I do support people in pain, especially when the Docs are so vague. Good luck with the Professor, they do, in my experience, actually listen so make your concerns vocal. I would try and find out what the anaesthetic was as they all have different results.

As a hypnotherapist you will be able to use your own skills to aid some aspects of your pain and can probably benefit from sleep. It made me chuckle that although the hypnotherapist I saw was brutally honest with me, although I had to convince her I wasn't an addict which was her first response.

I genuinely wish you relief soon, I found out today that I am going to have the surgery but don't know when yet.

Good luck, keep fighting