Not to go for a 'miracle cure'

[LovelyBath77]

I have internal scar tissue (adhesions) from many surgeries. My NHS consultant says there is no cure, they have tried to find something for over 20 years but nothing works. Once you have it, more surgeries simply make it worse, and can be risky. Online there are patients who travel to Germany for surgery not available here, where they do a kind of keyhole surgery not using CO2 gas (as it can dry the tissues and cause adhesions) and a kind of gel to prevent them returning. However the main contact seems to be through a Facebook group, and anything questioning it gets deleted. This puts me off. I have seen someone mention complications after the treatment and that was deleted. Said the NHS had to sort it out. If this treatment was reputable, I think, it would be available more widely and not like this. But then, they argue, it is that we are so used to only performing surgery the way it has been for years and surgeons won't change. They argue (this group) that you put your own life at risk not going for the treatment, especially people like me who have recurrent bowel obstructions. But, when I researched, the woman running the group has written a book (about how her child was saved by this treatment) and sells stuff like badges to 'raise awareness' I am unsure if this goes to charity or not. Also, her daughter, is grown up, is no-where to be seen and does not comment.

It reminds me a bit of a recent situation involving miracle cures with a baby and the circus around that. Now the latest news, with the adhesions cure, is this one surgeon has cancer. I have no idea why no others seem to be able to perform the surgery apart from this surgeon and clinic.

AIBU to not try and explore such options, DH and family are saying I am 'giving up'. I want to try and keep managing my symptoms and not get involved with this.

i would be highly suspicious

and i would want to be 110% sure about something that involved surgery. its not some £20 healing crystal that you can bin- these people will be cutting you open

A lady on FB has been, she did a fundraiser for treatment. I noticed she had to go back for a further op though. It seems the adhesions do return then, even with the treatment.

Go onto a resource called pubmed. Search it for academic articles on the treatment. If there are none, or the studies are negative then you need to assume this is a non-proven experimental therapy that should only be conducted in strict trial conditions, not as a treatment offered to all comers.

Another resource I've found helpful is quackwatch.org. While it doesn't specifically have info about this surgery, it has great articles about how to spot medical fraud and why exhausting "every option" isn't necessarily best for the patient.

You and your family could have a look together.

Well, I am German and a doctor and my gran had dreadful problems with pain from post-op adhesions and there certainly was no miracle cure for her.

I'd be v cautious.

Lots of treatments in Germany are driving by the principles of private medicine - if you can pay, you'll find somebody to do something

Think of adhesions as scar tissue, scars continue to mature and settle over a number of years. Most adhesion pain will eventually settle if left alone.

Personally, I'd not risk further surgery for adhesions.

adhesioninfo.blogspot.co.uk/2011/10/so-you-want-to-go-to-germany-and-have.html?m=1

Thanks! All helpful. I'm literally at the stage of having had so much surgery already they really will only operate here in a life saving situation- as the previous surgeries have been. However some people have had repeated surgeries, particularly in USA where they will do it, for pain. And often end up worse.

Yes there are loads of articles about these gels and barriers on pubmed. Some seem to work, to prevent them in the first place perhaps, less so when you have them already. Thanks for the links.

I had a quick look on pubmed myself. There have been several large reviews on the use of gels to reduce adhesions post surgery. Whilst there is some evidence of benefit, it all comes from one group in Germany which means a high risk of bias. The review concluded that there was not enough evidence to demonstrate benefit, but there did not seem to be any harm.

There is simply not enough evidence in the use of these gels in the treatment of existing adhesions to support their use.

If you do need surgery again, you might want to discuss the use of the gels with your surgeon in the hope they will prevent additional adhesions forming, but I suspect that in the UK there is not a huge amount of experience in this.

Good luck!

Yes, this is the group I mentioned. It really concerned me that any queries, they get really defensive. If it was out in the open and had good tests results etc then i might trust it more. But not as it is. Thanks Bella.

In my case they will only operate of another bowel obstruction, as they have to, so unsure in that situation if would be appropriate, as last time they said they wouldn't due to possible infection risk.

In the Uk / NHS I mean.

@LovelyBath77 I've just pm'd you.