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Osteomyelitis, options other than amputation

J

jacqui44

Newbie
Messages
2
Type of diabetes
Type 1
Treatment type
Insulin
Hi, we are looking for advice, both myself and my husband are type 1 diabetics, however last August my husband had an accident leading to infection in his toe, he has had several inpatient experiences, where lots of mistakes have been made by his medical team, including not treating the infection aggressively with IV, not actually informing us he had a severe infection in his foot which led to severe anaemia and blood transfusions, after an appointment with his consultant yesterday, it felt like 'the end of the road' we were told the IV antibiotics he has had for the last 6 weeks have not improved the infection so they are stopping them, they have put him on oral to 'keep infection at bay' we are worried this will not work and the infection could continue to spread, we are also worried we haven't been offered any other form of alternative treatments, he is only 43, the structure of the foot has collapsed, it has severe swelling, open wounds from debridement and we were told, he has to consider quality of life versus amputation, it feels so sudden and no other options have been put on the table from the consultant, can this possibly be it? We are informed the MRI shows severe infection back to the heel, multiple fractures but that's it, they keep mentioning something called Sharko, today is the last day medi-home are coming, they say there is no point continuing with IV anti-biotics because if my husband got 'really ill' and needed aggressive anti-biotic therapy in the future it may not work so they have put him on orals. We just don't know what to think or where to turn, we know the hospital knew about the osteomyelitis in December but failed to tell us or treat it aggressively until January when he was readmitted severely anaemic and needing blood transfusions, they did every test in the world to try and find bleeding in the body, but there was none, it appears the anaemia was simply due to the infection in the bones of his foot, they also knew about the anaemia in December and in fact when they discharged him he was already so anaemic he should have been having transfusions at that time, instead he was readmitted four days after discharge very poorly, they didn't investigate or treat the anaemia and they didn't inform him he had this osteomyelitis that would lead to the situation we are in now which is, amputation? Does anyone know of other treatments? possibilities? etc, we would be grateful for any advice. Many thanks
 
Hello and I am really sorry to read of your hubbys awful ongoing condition. Could you ask for a 2nd or 3rd opinion or ask to be referred to another hospital, as we can choose where to go nowadays. I don't know anything about the condition, but it must be a very anxious and scary time for you both.
I hope someone will be along to help and advise you better. never give up though, try( if you can) all the available avenue's and also you could try the Library and Google, as these could be useful.

Good luck and all the best RRB
 
I believe Kings College Hospital in London have a specialised clinic that have had good results in treating diabetic complications, maybe you could ask your care team to put you in touch, its worth a go.
 
catherinecherub said:
Agree with @satindoll,

Read this article, which shows that there is a dedicated team that help people like your husband and ask for a referral to them.

http://www.dailymail.co.uk/health/article-2897643/Diabetics-amputation-aren-t-like-Britain.html
Click to expand...

Thank you Catherine I couldn't find the link to post it, the reason I suggested Kings is because they saved my brothers leg when he had Osteomyelitis when other so called specialists had given up, yes it took months but he now walks with barely a limp and that is only on very cold days.
 
I'm sorry to read of your husband's problems. I think that the only good advice is to get further specialist advice but time is probably really important.
If you are going to google as RR suggested, then I think that your doctors meant Charcot's foot.
 
Hi jacqui44

I am so sorry to read about your husbands problems.

I have got Charcot foot in both legs with collapsed ankle joints and collapsed mid foot. At present both my legs are in casts due to non healing fractures. It is such a difficult thing to treat and has been affecting me for 15 years. I was seen by the specialist team at Kings College Hospital in attempt to save my one leg from amputation when all else had failed. I had specialist casts made to offload any pressure on the affected areas and tried different cocktails of IV antibiotics . The osteomyelitis in my heel bone eventually mended although it took well over a year. Since then I have had two total ankle fusions and at least 10 further foot fractures but no further bone infection.

It is a tough call to keep searching for treatments but it is worth pursuing if there is any hope of saving the leg. Ask for a referral to see a specialist in Charcot foot management as they will have the best up to date methods of treatment and possible surgical procedures. Do push for an urgent referral as the situation with infection and open wounds in a Charcot foot is dangerous.

I was told years ago that there was no option but to amputate but I kept fighting for my leg and I have still have them both attached although at present in casts. The team at KCH although realistic about my problems weren't negative about the chances of keeping my legs. It is a very long process to get on top of osteomyelitis and realistically there will come a point where quality of life versus amputation does come into the equation but it is worth fighting for another point of view from a specialist.

I wish you well, Charcot foot is one of the most destructive, debilitating things that can happen as a result of diabetes. Good luck trying to find further medical help..
 
Hi everyone, many thanks for all your advice and words of kindness, my husband does have a cast at present, a big knee length boot to offload weight on the foot, he can only wear for a short period of time, we have asked about other options etc but we aren't getting any information from anyone at our hospital, my husband is reading up about the Kings Hospital treatments, sounds promising, This has all been sudden for us, from December 2014 to now and being told amputation, is very difficult to accept. We will keep researching.
 
It does come as bolt from the blue and is a devastating diagnosis to take in.

.There is help out there with some amazing Doctors and surgeons even if it means travelling a good few miles to be seen. I would urge you to make contact with the KCH team via your hospital or gp as I wasn't under their care until I was told the only option for my leg was amputation. I asked my hospital for a second opinion and they were fine about it forwarding my X rays and hospital notes. KCH saw me quickly and put a plan in action. I didn't stay under their care and was returned to my local hospital with input from them.
 

Wow, what an awful condition this is, but I'm so pleased you fought on and you were able to save your limbs. My heart goes out to all of you suffering from this condition
Take care RRB
 
The article mentioned relates mainly to atherosclerosis and vascular problems but the same team deal with Charcot foot which is neuropathic and bone related. I saw the same team as mentioned in the article, they are multi-disciplinary and fantastic.
 
Dear friends,

Last year, I developed a lesion on the tip of the second toe of my right foot. According to the specialist's first letter to my GP, the lesion penetrated into the bone (osteomyelitis) as some loose bone-tissue came out with the probe, The wound didn't want to heal in spite of the regular re-dressings and/or 6-week course of strong (oral) antibiotics. Then I was told, that I might have to have the bone removed (to my question it turned out, that not only the bone but the also the toe was to be chopped off). To make matters worse, this "minor" amputation was subject to successful completion of a quite involving operation to by-pass the 3 blockages in my artery of the right thigh. I started to search the net and found an article about CO2 foot spa treatment (http://www.iasj.net/iasj?func=fulltext&aId=48581) on Google; and, following the description of the article, I had a 30-minute soak in sparkling mineral water, dressed my woud for 3 weeks, and waited. By the time for my next check-up, the wound healed. I don't know if it was the spa or a delayed effect of the antibiotics, but it may be worth a try. Especially in the light of the alternatives.....

Unfortunately I have developed another ulcer; now on the inside of my little toe rubbing against the 4th toe. I was prescribed antibiotics again. Three weeks have gone, my ulcer became larger and yesterday, I was put on another three weeks of antibiotics. I start the foot spa within 1-2 days, I hope I can report back some success...

(I found another article since: http://drsircus.com/medicine/co2-medicine-bath-bombing-your-way-to-health).
 
I was anemic to the point of near death no energy hemoglobin was 6 and oddly pulse ox wass 100.
Folate iron and several other test points all bottomed...No dr considered the possibility that iv antibiotics proton pump inhibitors were leaching my neccesary minerals vitamins....THEY PRESCRIBED IRON BUT NEVER ADDRESSED BODY CANT ABSORB ORAL IRON WITHOUT STOMACH ACID .
Omeprazole...HELPS HEARTBURN BUT KILLS ACID SND MAKES IRON CONSTIPATION WORSE..LAY DOWN AFTER IRON PILL AND BURNS A HOLE IN YOUR Stomach
IGNORED BECAUSE OH COLONOSCOPY WILL SEE WHERE YOUR BLEEDING...never offered any options other than saying its normal .
WITH NO FOLIC ACID BLOOD CELLS ARE MIS SHAPED AND CANT CARRY O2...100 % pulse ox is far less when 28% of cells do no carrying of o2 gut was mess and no vitamins absorbed in diet.weak constipated infection not improving and felt so weak i quit trying to deal with the downhill slide

Long story short..i wanted to die..60 and walking to bathroom was all i was able to do in a day
Long story short demand ..Full blood panel.hormone vitamins panels etc ck for iron ulcer...and ask about copper glass .
After workup i got the vitamins that allowed me to heal no bleeds and no bs exploratory colon surgery to locate bleed that caused anemia..meds caused anemia etc
Sorry i rambled..but dealt with drs carrying learners permits to kill...demand what you need...and educate yourselves by reading whats available....


Strength came back
 
Hi firstly really sorry to hear of your predicament , it’s devastating when you have such bad news. In some ways I do understand when your specialist comments about quality of life versus amputation. I can speak from personal experience as I am a below knee amputee , prior to my amputation walking was painful and extremely difficult, I was on antibiotics for a year to try and cure a foot infection , I was on 1g a day for ages so much so the skin was peeling off my hands and I had ulcers on my tongue, life to be honest was extremely difficult. I had my leg amputated in 2014 and I’ve not looked back since ! The difference is night and day , my leg doesn’t rule my life I have mobility plus I have an excellent positive mental attitude , something that was difficult in those years prior to my amputation. Amputation is a big deal mentally probably bigger than the physical aspect , as I can say it’s not the end of the world in fact for me it was the beginning of a new one both mentally and physically , I’m no longer in pain and my quality of life ( yes with a few adaptions) is far better than before my amputation , and let’s be honest quality of life is what it’s all about .
 
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