Desperate for advice
Posted , 2 users are following.
Hi,
I hope that this forum is still in use and that someone can help with our current situation as we are desperate to find a solution to my mum's extensive leg ulcer.
To summarise, she has had an ulcer in her lower leg for 18 months now which has continually become worse and it's extremely painful. It is atound 10 inches in length on the side of her lower leg and it is making its way round the back of her leg. Her health professionals continued on a treatment of re-bandaging it every 3-4 days for a year and a half even though it was gradually was getting worse.
My main reason for feeling so desperate is that the current treatment involves a nurse taking slough off the would daily with something resembling an emery board on a cloth. (The aim is to eventually treat the area with a spray but we never seem to get any nearer that day with slough coming back very quickly. )The pain is excruciating and I cannot believe that there is not a better and more humane treatment. Could anybody give me any advice as I fear my mum is heading for an amputation soon if this is not dealt with and due to her other health concerns this is less of an option that would normally be the case. Any help much appreciated. Thanks.
0 likes, 3 replies
barry69443 mairi21838
Posted
I tried writing before but I got booted out by the website as I was writing it, so I am writing this again, on my computer so that can copy and paste it in. If it doesn’t end with “The End”, please complain and send me a message, quoting my last words.
Defeating a skin ulcer is a long campaign. Your first step is to “know your enemy.” The medical experts must have carried out tests and advised the patient of the results, but these will have almost certainly be ‘summaries’. What you need are the details. What tests were carried out, and when, and what the results were. They must be in a written form of some kind. When you have this, research the tests on the web, to see what the tests include, how reliable they are and what the declared results mean. Some of the medical terms may be new to you – research them.
Write out your understanding in one document, quoting sources as you go. Include the sources’ web pages in the document.
Research the web again, because writing the document will have taken time and your understanding will have changed.
Update/revise the document. Now your understanding will be as complete as it can be and you are ready to begin the fight.
Doctors are ethically constrained to ‘do no harm’. That means that unless there is positive documented research on a treatment, they cannot recommend it, but you are not so constrained. A treatment may only have a declared 1% success rate and so not recommended, but patients differ in their response, and a 1% chance is better than the 0% of not trying.
Research costs time and money. Governments fund universities, etc. because somebody has applied for funding to carry that research out. The individual is motivated to discover the answer. Drug companies carry out research to discover new drugs that they can patent(lasting 20 years) and profit from. Sometimes the two get together for a project. What the companies rarely do is research new uses for old(out of patent) drugs, because it only costs them money, without any profit. The treatment may be out there – you have to look hard and sometimes use your imagination to find a way forward.
Photograph the ulcer, with a measuring tape beside it, at regular intervals, because you need to record its change over time.
If you identify a possible way forward, talk it over with the patient, explaining it in detail before you begin, checking with the medical consultants about what hazards lie ahead.
A negative result is still a result. Publish it, so others may know what didn’t work.
I understand that you were hoping for an answer, but if the medical experts are not succeeding then this is your only way forward – to become the expert.
I have no ulcers myself, or know of any of my family that does. My motivation for writing is that have used dietary xylitol for several years(reducing the rate of tooth decay and minimising the risk of diabetes) and recently noticed its topical effect on a skin cut. I researched the effect on the web, and found nothing. This evoked my interest, on its possible uses on skin ulcers. Please do not take this as any sort of recommendation – identify and understand your own enemy first, then choose your weapon.
The End
mairi21838 barry69443
Posted
Hi Barry and thank you very much for taking the time to write such a full response to my query. I genuinely really appreciate the time you have taken especially when the site was booting you out. I was able to view it all til The End so that's great.
I had to read your post twice to take all the info in but I feel I am armed with very good general advice to tackle the very complicated problem. It's very good advice- know your enemy- as I regularly feel we maybe barking up the wrong tree as far as treatment goes and time is of the essence and that's before I even consider how painful the Ulcer is.
It's very interrsting to read your findings on Xylitol and I shall bear that in mind.
Thank you so much again!
Keep well,
Mairi
barry69443 mairi21838
Posted
Over the lifetime of a skin ulcer the bacteria have enough time to evolve a response to any treatment. You are searching for an immediate response, but the efficacy of treatment may reduce with time because of the bacteria’s evolution. That is what the photographs are for. You need to be prepared to change the treatment if the symptoms stop improving. Become the expert and be ready with a second approach.