[Shezzaz]

Hi guys,

I'm not actually a diabetic myself however, my father is and I have started doing some searching on the internet to try and ensure he gets the best possible advice...

He's 68 years old and has been a type 2 diabetic for over 15 years. Insulin dependent.

He has been in and out of hospital since Christmas this year for three week stints barely getting the chance to come home before he has to be admitted again... He has a team of 8 Doctors currently working on his case as it is so unusual "apparently" and they are a combination of bone doctors, surgeons, endocrinologists, vascular team, orthotists and various others..

A brief overview...

He has had no feeling below the knees for about 5 years... but had managed to carry on just fine for most of the time.. He's had eye trouble and all the usual diabetes related issues, well the most common ones... At Christmas time he developed an two ulcers on his toes on his left foot... He was in and out of hospital with them and he contracted an MRSA Staff Infection... He wasn't responding to any antibiotics and this resulted in the amputation of his second and pinkie toes on his left foot... He had very poor circulation in his left leg and they put balloons in to stretch his arteries to get better blood flow down to his feet to hopefully heal... The amputations took a few months to heal and are now looking quite good.. While they were healing he got another infection in his big toe on his left foot... He had a procedure where they removed his toenail and debribed the skin around his big toe for better healing.. It looks terrible but we don't think its in too much danger at the moment..

During all this time his Right ankle has been extremely swollen, red, hot and he has had shooting pains in the top and arch of his foot.. we kept asking the doctors about it but to be honest they mostly ignored it and consentrated on his left foot/leg.. He had a dopler on his right leg/foot and they couldn't find a pulse.. they thought this is what was causing the hot, red and swelling. He had a few blockages in his right leg so they performed the same procedure of putting balloons in his arteries to increase the blood flow and were monitoring him... They wen't to send him home every second day and its been all over the place..
In the last week they had told him to get up and walk around on his feet and then don't and then do.. etc..

They decided last week that he has Charcot's foot.. They thought initially in both feet but then swapped and changed back to one foot... They said they were going to put full contact casts on his feet and it would take about 6 - 9 months to heal..
Then they revised this and said it was only in one foot and they would put a moonboot type boot on it.. So the orthotist put a boot on him about lunch time friday.. He experienced quite a bit of shooting pains and told the nurses about it.. Finally on Sunday lunch time a nurse was concerned about his complaining and took the boot off to have a look... The nurse swore and ran off.. And he was immediately told to have total bed rest.. He has about 6cm x 6cm black swollen crushed area on the top of his foot and the beginnings of an ulcer underneath his foot... He has no feeling in his feet at all... He couldn't tell if the boot was too tight or too loose and there clearly wasn't a gauge to measure it with...

He is now on oral antibiotics that as far as I know won't do a thing to help because of the MRSA as he is resistant to all but one intravenous antibiotic as far as we have been told.. They gave him an infusion of some bone strengthener and have now told him he can weight bear on his left foot..

They are also talking about putting the boot back on... They have told us that Charcot is very rare and they haven't seen or had much experience with it or his complications...

I'm worried about them putting a boot back on as I would not considering he has almost an ulcer and the top of his foot is badly bruised and slightly crushed..

I'm scared that my dad is going to lose his foot as a result of trial and error and am unsure where the best care would be.. He may well be in the best possible spot but I just can't let this go without doing everything I can to ensure he has all the right info and treatment..

Would you let the doctors put a boot back on him?? I'm so hesitant to.. And his foot is much more deformed than it was when he went into the hospital.. His left foot is borderline charcots and I'm worried that if they put a boot on his right foot and he weight bears on his left then his left will collapse like his right.. I just don't know what to do and we're not getting much solid info from docs..

Anyone who has had any experience with Charcots please let me know how you are, what you did, your experiences etc.. and any advice on this situation is very welcome..

Thank you kindly for reading my post..

Shez

 

[moon]

I've not heard of Charot's so Googled it and came across a thread started by a member of this forum as well, Richard157. It's an old one from 2008, so perhaps he will weigh in with any more current input or resources.

Charcot foot disease | Diabetes Discussions - Diabetic Connect

Am so sorry your dad (and you) are going through this. Could you call around to other places (in the USA one would try various teaching hospitals) to inquire how many cases of Charot's they have had, and what their experience is? Perhaps you could get a second opinion and evaluate another medical team.

Good luck - wish I could be more helpful.

 

[Jen]

Your father is having such a rough go! I know you are crazy worried about the infection/disease aspect of this, but you did not mention how his blood sugar is in all this. I don't know if the medical staff is paying any attention to it either, since they seem to be in triage mode. Is anyone managing it? If his blood sugar is out of control, that will make it much harder for his body to heal.

Jen

 

[jwags]

On the many different forums I frequent I have heard about Charcot foot. It is a diabetic complication. You say your dad has had D for 15 years. How have his bgs been during that time. Sometimes some of these complications may be made worse by too high bgs. What many of us have learned is to do our own research about diet, exercise, meds, insulin to determine how we can keep bgs very low. I know if his bgs are higher than normal they could be making infections a lot worse. I have no idea about the right treatment, but if he has infections on the foot they need to be dealt with first.

 

[fgummett]

I'm not a Doctor but if your father has poor circulation and numbness in his feet I would definitely ask for a second opinion before wrapping his foot or feet in a cast... I'm not clear how it makes sense to further impede circulation and movement of the foot?

As above: I realise they are "fighting fires" just now with the foot ulcers etc... but please do not lose sight of the BGs as these may be the key to managing what is going on and expediting any possibility of healing.

 

[Patdart]

I so agree with Frank above...there's more to this than just booting his foot...run, don't walk to another opinion.

Good luck,

 

[Shezzaz]

Hi guys,

Thanks for all the replies.. Over the years dad has had a lot of trouble managing his levels.. But in the last two to three years he's become a gun at it and has been right on top of them... I believe the nurses have a schedule in place and a sliding scale depending on his readings as to what insulin and diabex he takes etc... So as far as we can, we have his levels under control.

They told him his Kidneys were borderline the other day.. But we still haven't found out if they are borderline what??? That was about two weeks ago.. They just chop and change so much.. Apparently his Vitamin D is low.. And from the research I've done I believe that can affect the bone regeneration cycle so they're putting him on supplements for that.. I'm just worried about the boot and the foots! Ack!

I wish there were set procedures in place to follow!

 

[Shezzaz]

Oh and thankyou for the support and info you have provided.. it is very much appreciated.

 

[jwags]

I'm not sure about Austraila but in the US they recomend HbA1c to be around 7.0. Many of us feel that is way to high to avoid complications. Do you remember what is last HbA1c was? We have the ADA which recomends a rather high carb diet which is detrimental to a lot of diabetics health. As diabetics we have had to take our health in our own hands sometimes to avoid complications. Right now your dad needs to everything to fight the infection. The lower carb diet he can eat the better.

 

[onlymep]

hi Shez sorry to hear your dad is having a rough trot there. Is he being treated in a public hospital or a private one? I'm asking as a realise how hard it is to get a 2nd opinion if you're being treated in in the public system... the waiting lists are way too long and it could mean a bad outcome for your dad. But perhaps just continue to research and seek advice as you're doing and at the very least that way if it is a public hospital you can try and get the best resolve from them by questioning what they're doing or not doing. If in a private hospital, I'd be looking for another specialist, etc for that 2nd opinion. I agree with what others here have already said too. Wishing your family the best and hopefully your dad will get to keep his feet and any other body part they have in question.
@Jwags - yes here in Oz they like HbA1c to be <7% too.