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Wednesday, November 12, 2014

My diagnosis of Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES)

Over the past 3 months I have had 3 separate hospital admissions, some of lengthy duration where the condition Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES) was missed by general surgeons, colorectal surgeons, gastroenterologists, rheumatologists, gynaecologists and pain management experts. I go to another hospital for a follow-up out-patient appointment where the gastroenterologists are EDS experts and lo and behold in a very short time, ten minutes - a diagnosis is made of this peculiar, although by no means recently discovered condition (1924). I had to perform a sort of physio assessment by getting into various positions, going into forward flexion, rotation of spine, extension of spine as well as doing things like pushing my legs against the doctor, and other similar movements. This was to see if the pain was triggered. When I saw my osteopath later in the day, he also did a further assessment of getting me to raise my head and aiming one elbow at a time towards my knee. This did bring the pain on a bit.

The treatment (and there is some) involves a steroid and local anaesthetic into this nasty trigger point which is the result of a nerve that has come from the spine and wrongly deviated into my abdominal muscle (most likely rectus abdominus), and on palpation feels like a pea deep in the muscle.  I could always located it exactly on palpation, as is typical. I am also to have some manual therapy and trigger point work in the area, which I have begun.

Anyway, despite numerous investigations (MRIs, CTs,Ultrasounds) this was finally picked up on simple palpation and some movements. I nearly cried with relief when I received the diagnosis. At least I know my pain is not sinister and can now be managed, also with pain relief, I will also be doing some Bowen therapy work on it too.

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During my first osteopathy treatment, O (Osteopath) performed general palpation and gentle massage around the area -  O was able to locate the spot(!). O also had to do work into my inguinal ligament and into the top of adductor longus as well as work in the diaphragm.

Immediately following the treatment, I felt higher up on my hip and out of my hip (taller). The day afterwards things were fairly 'quiet' with the pain location going up to about a 3/10. I was then OK for another day before hitting a massive fatigue and the pain score rocketing to a 6/10 which came mainly from my lumbar spine in my disc bulge/hinge at L4/5. Side flexion was agony. I managed the day with heat - hot water bottles and pain killers. I then saw O the next day.

In the next treatment session O gave me an exercise for my hip to encourage movement which is very limited (internal rotation). O then worked on my back before going back to the pea-site of the pain. There were definitely some ouch movements. O also worked on my upper back and trapezius.

The next day I hit a big fatigue which improved thankfully throughout the day. My upper back was also in terrible spasm. Today I am relatively pain-free, and less fatigued.

I will keep you posted over the course of the journey in my treatment with ACNES.

For further information:
https://www.thepermanentejournal.org/files/Summer2002/acnes.pdf

12 comments:

Maureen Thistle said...

Hi ...could you say how youa re doiing now? My teen has been tentatively dx with ACNEs and we are waiting for an appt to get the injection.

MizzK said...

Hi Maureen,
Osteopathy (manual massage), Bowen Therapy, massage on a spiky ball and pain meds all help. They can't presently do my injections because I have too many underlying bowel problems and they have said it wouldn't work at the moment. I hope that I will be able to have the injections when the bowel situation settles. I hope your daughter is helped very soon! I will do an update on here at some point.Isobel Knight

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aliya seen said...
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aliya seen said...

Students now have general surgery residency personal statement for the betterment in their exams. They can now go for a follow-up out-patient appointment where the gastroenterologists.

Snazzy Falkon said...

I was diagnosed with this. I am taking pain meds, and they have started shots in stomach. Laying down is the best way to stop pain. What else have you tried

max den said...

amazing post

Adriana henry said...

Physiotherapy North Ryde is beneficial for for the joint and muscles pains and it is less expensive than the other pain relief medicines . The patient should take exercise according to the prescription ,prescribed by the doctor.

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Seems like you have a lot of knowledge about the particular topic. and i think your long hours at hospital are the reason for such experience. I liked your post very much.