Does anyone here have experience with Anterior Cutaneous Nerve Entrapment Syndrome?
ACNES: Does anyone here have experience... - Ehlers-Danlos Sup...
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Ginny52
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Not personally, but it's interesting to read about.
Management and treatment
Most pain killers have no effect on this type of neuropathic pain. Treatment is by injection of the anterior cutaneous nerve with a local anesthetic at the point at which it pierces the fascia by free hand or under ultrasound guidance. Neuropathic pain killers like pregabaline or amitryptilline may be helpful. In patients in whom pain persists after several injections, surgical exploration and neurectomy is indicated. This strategy of injections followed by neurectomy is curative in 80% of patients.
I read one reference which suggested that those lucky enough to have eds might be more susceptible to this, but couldn’t find any more- probably just more random good fortune!
I’m trying to find out how you get treatment for it in the Uk.
Lol lucky enough 😂😘 Yes I've found it quite a decent joke too!
There is an association between cutaneous anterior nerve entrapment syndrome and EDS.
I've found some things that are hopefully helpful and useful to read:
academia.edu/36018409/THE_R...
(You can download the full PDF from the site)
This is good for guidance and treatment along with what types of specialist diagnose and treat:
danceinjuryrecovery.blogspo...
You probably have to pay to read this. Probably not with it. Google some of the words in it together if it's interesting and see if you pick up somewhere else it's published:
google.com/amp/s/www.resear...
This is similar:
aafp.org/afp/2018/1001/p429...
Different diagnoses here, but similar in many ways:
rsds.org/wp-content/uploads...
This is comprehensive, I've not read it all, but will:
hindawi.com/journals/isrn/2...
Hope you find good help, relief and treatment. xx
The author of the dance blog is from the UK and went to a hospital where gastroenterologists are EDS experts and diagnosed quickly. Then you an osteopath. Maybe contacting EDS UK would direct you to where those specialists are located and in which hospitals.
Maybe going private to Osteopath with EDS experience is also useful. So you could obtain contact details for both and ask receptionists questions.
She says Bowen Therapy and is a therapist in the UK.
Saassii, I read the first one, and it’s fantastic- and I can just ring her and ask her, I’m pretty sure I know who she’s talking about.
There’s lots of stuff there that will help me to help a young friend who is having a really shitty time, in the very worst way- v her blog ellahollis.wordpress.com
Thank you so so much!!
I looked at the first one with blurry eyes, no glasses, and read ‘a horrible connective tissue disorder’....that was more like it!
❤️
You’re a goldmine!
The google one is just what I need to find someone to help my daughter ( I shared my good luck with all my beautiful children)- she is having a wretched time with ulnar/ cubitali nerve entrapment, and needs surgery. Xxxxxx
So glad to help! Thank you, I'll definitely take a read!! I wish you both every success! 😘😘😘
I've just started reading her blog and haven't finished yet. There's potential thought for feeding her a low histamine diet. It's the only way I can eat since I was exposed to microbes in a water damage at home. (Those with EDS are terribly susceptible. Our protective barrier is connective tissue! When it's more permeable and easily damaged, the effects and damage are much greater.) High histamine foods trigger terrible mast cell activation for me. Histamine is released via mast cells when in contact with antigens, pathogens, bacteria, virus, dust, mold, pollen etc. So if your mast cells are already overactive eating a bunch of histamine can overwhelm the system. Her vomiting etc could be the whole gastroparesis end of things, but low histamine may still be more tolerable. Eg if I eat blueberries I immediately get terrible pain and UTI. Avoidance of blueberries, all things fermented (including Apple cider vinegar) will mean it doesn't happen at all. Eat dairy, cheese etc, thrush wants to kick start. While being exposed and before I understood what histamine was and how it worked in the body I would vomit a lot too and was dangerously underweight. Incidentally histamine is a neurotransmitter! It's released to aide digestion. So experiencing neurological effects is quite impossible. So if any consultant tells her it's all in her head, she should tell them to get informed. Anxiety, depression and a slew of other difficult to manage emotions and hormones are most unfortunately part of the process. Sometimes people call it the histameanies because after eating a trigger food, a kind of agitation can start. Just some things to think about and see if any applied might help.
Also homemade bone broth was a God sent for me. I started consuming as I wasn't holding much down, so it was a gut motive, but a miraculous thing happened it that my overall joint pain reduced considerably and has never regressed to where it was after years. I regularly consume it now. We may make defective collagen, so taking collagen from animals who don't make defective collagen is where it's at.
If you want the low histamine food lists I can share them here?
She just hasn’t been able to keep anything it all down since her ileostomy- there are a couple of surgeries that have helped people with gastroparesis, and I think that’s where her hopes lie at at the moment.. l need to be tactful, because I suspect she really can’t eat normal food at all now- poor love, she really is at the far end of Eds’s tender mercies- that’s why it was so extraordinary that she should be subject to a quite personal attack from a consultant charged with her care! Medicine is full of surprises!
I’ll ask her mum about what they’ve tried so far- husband showing signs of wanting to go to bed, I’ll write tomorrow xxxx G
On the bone broth- I think you are quite right. My son is having a lot of problems too-his seem to include the mast cell thing, and I know I have to do more to help him- I would love food lists!
I began having problems with thyroid hormone, and I’ve just started taking porcine hormone. I felt sad about this, because of not wanting to use the pigs, but I think it has to be faced. It is working better. And yes- our collagen is defective. It seems like a sort of ancient magic, that you can take on another animal’s positive attributes by swallowing bits of it, but it’s true! And I know my son would point out to me that lions kill gazelles to feed their babies. John is 28, but he’s my cub, and I would no doubt strangle a cow myself to make him well. Thank goodness he is less silly about these things than i am xxxxxxxx
Chicken stock (switch for beef, lamb etc)
3 chicken carcasses
1 large onion
1 large carrot
1-2 large sticks of celery
Alternatively you can cut the entire large bottom off celery and the green tops, wash and use in place of a stick, save your sticks for another soup
Fill with water
Pressure cook for 99 mins.
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