Had a toe amputated in the last couple of years?

[Secudus]

How was the post-op treatment you had in the hospital/community, what dressings were used, did you have NPWT, or Granulox, did you have a quick recovery with little or no hic-up's or did it turn into a long haul...

I've a story to tell, one that appears to be the same as many I have spoken with in my time in NHS care, but I'd like to hear from others first before relating mine, would that be acceptable?

Many thanks

Stu.

 

[donnellysdogs]

No amputation. Sorry, but also glad I can't help but hope this will bump up to get a reply.

 

[Robinredbreast]

Hi Stu. it doesn't sound a very positive experience from reading your post, but just wanted to say hi and all the best for the future.

Take care RRB

 

[Secudus]

Thanks for the replies, I'm busy typing up what's been happening, hopefully it might give people yet to have this come about, some insight as to how I've been treated and what they feel they would do if it happens to them.

Stu.

 

[dawnmc]

Hoping to hang on to mine by eating low carb healthy fat.

 

[Secudus]

That's good you do, one thing I think was very helpful was going on the DAFNE course ( http://www.dafne.uk.com/ ) in 2013...

 

[Ali H]

My Dad currently has foot and leg issues, we have regular District Nurse visits to dress them. He has neuropathy and cannot feel any injuries, his legs are constantly leaking fluid now and range from bright red and infected to scabby and under control. They put Inadine dressings on, the orange coloured ones, along with various other bits and bobs. What has happened to you dare I ask?

 

[Secudus]

Thanks for the replies, and no, it's not a good story, but I think it should be brought out to show how things have gone since it started in late December 2012.

I've had Type 1 diabetes since I was 2, so that's coming up to 53 years now. I had fright when my right foot went cold in the summer of 2003, which was quickly diagnosed as PAD, and after scans was shown I had a severe narrowing in my femoral artery, with more problems in both Anterior & Posterior Tibial arteries and the Peroneal.
It also showed the arteries in the foot to be very restricted, in that it was like having a 3 core cable, turning into a single just below the ankle, ouch!

As a consequence I had an Angioplasty on the Femoral aertery which gave me a breathing space of another 5 years, before it had a major shut down in 2008, which after a discussion with my Vascular Consultant, we decided it best to go for a bypass with the PTFE one, as it would be less invasive and allowed me to get back to work quicker than if I had a blood vessel taken from the left leg,

That sorted it and is still working fine & dandy to this day!

Between these two events I saw the same Consultant at least twice a year and then was changed to one yearly visit to check all was fine, I also had Doppler checks at the Diabetic Clinic at my GP Surgery.

All this was duly put down in my medical notes, for all to see. And started looking after my feet a lot more than I had before

Any whoo, back to December 2012...

One day, I noticed that the right fifth toe seemed drier underneath than normal and put some Aqueous cream on it as I usually did each day after showering, and making a mental note to keep an eye on it.

After a couple of days I hadn't notice it getting any better and as I was going into the Surgery to have a blood sample taken for the Diabetic Nurse in two weeks I thought I would ask the Nurse there who was also going to take a doppler and check my feet, what it might be, that was the Monday.

It turned out it was athletes foot, and she said to get a cream from the chemist, which I did that day and started to look more closely at it day by day, by the end of that week it looked exactly the same, flaky.

The second week, all seemed as before, flaky. But on the Wednesday night, I noticed there was a hair line crack in the skin, which looked a little red and decided to give the Doctor a bell the next morning to see what I should do.

Got through at 8.30am and was told the Doctor would ring me around 12.00 - He rang and I asked him if I should be on antibiotics as I was worried about it leading to problems if nothing more was done with the bad circulation in my leg and foot.

I was surprised by his answer, which basically was a lecture on why he wouldn't give me antibiotics for it could worsen things more than it would cure, he didn't need to see it as I was seeing the Diabetic Nurse the following Monday and keep an eye on it over the weekend. That was Thursday...

Friday night I checked it again and the crack looked about the same, but there appeared to be a very slight darkening space about 2x3mm on the top of the toe, right side, low, which after a closer inspection and a rub with the towel, seemed to be nothing more than dye from the new socks I had been wearing that day...

Saturday, had to go to work again, came home and got ready to shower, that little dark area was now back again, but more pronounced and defined, like a black spot trying to form, ****, was not happy & decided to visit the local A&E next morning, opening at 11.00am, didn't sleep a wink!

Sorry its so long, I'm a bit of a waffler when I write, will try to condense it...

Stu...

 

[Secudus]

My Dad currently has foot and leg issues, we have regular District Nurse visits to dress them. He has neuropathy and cannot feel any injuries, his legs are constantly leaking fluid now and range from bright red and infected to scabby and under control. They put Inadine dressings on, the orange coloured ones, along with various other bits and bobs. What has happened to you dare I ask?

Hi...

You'll have to wait for what's happened to me, but I can relate to your fathers problems well.

Inadine seems to be one of the NHS's cure all, I've had it many a time and it's something that made little difference to my problem, ever.

That's not saying it's not worth trying it, but there must be some dressing changes made after a certain time period, especially if there's no visible positive change to the condition.

In my time over the past 28 months there seems to be a marked reluctance of trying something else, at a cost to the patient's condition.

 

[Ali H]

Stu I can see where your story is going, sheeeesh. I have to say we are extremely lucky with our GP and practice nurses, it is never a bother to come out and they will invariably not bother with a telephone call back and just come anyway as we are not far from the practice. Dad needs the sort of surgery you had but at nearly 91 he isn't up for it, his doppler tests a year ago were not good.

Ali

 

[Secudus]

Ali.

Yes, you are lucky to have both a GP and Practice Nurse's that know what their doing, I've had some that can't put a VAC dressing on, without wrapping 300 foot of drape on your foot, trying to stop a air leak and still failing, or cleaning a diabetic chronic wound with tap water, and then saying that's what we always do... As a consequence I had an infection that put me back in hospital on a antibiotic drip for a week.

My best wishes to your Dad and your family.

Stu.

 

[Ali H]

Priceless, just priceless. Not good enough is it, where was the sterile saline pack?

Ali

 

[Secudus]

Hi Ali.

Funnily enough, it was staring her right in the face, I had my 5th right toe of the right foot removed on the 19th November 2014 and was having my dressing changed daily in the week at another surgery as I had to move from my home to my sisters as I wasn't allowed to drive and had to offload it as much as possible.

The weekends were covered at the local hospital by community district nurses, and this is where I found a vast disparity in experience and knowledge of community nurses, not good.

Things like not having sterile scissors, or tweezers with them, and not being able to get them from the hospital.
On the occasion with the tap water, I brought all the dressings and an aerosol of saline solution put out for her to use, but because she didn't know how to alter the bed, while I was dealing with that I didn't notice where she got the water from to clean the wound.
I only found that out after she had finished dressing the wound and while she was clearing up, I noticed there were no empty plastic tubes that are used to contain the saline solution, so asked what she had used as she didn't use the aerosol one I brought.
She had used tap water, and didn't know the aerosol contained sterile saline, even though it was written all over it!

I also had a ribbon packing dressing that had to be changed every day, as the little toe had been taken off back to the metatarsal, it left a hole nearly 25mm deep, that usually took a length of 100mm ribbon to fill it, and left around 80mm to remove the next day.
On this occasion the nurse had washed the wound and then started to dry it, so I queried why she
hadn't removed the ribbon, she said she had washed it all out, which patently she had not and I could still see it in there - She wouldn't have it and argued with me that it had all dissolved, in the end I relented as she said I was being aggressive, but then she started to try and pull it out, and then squeezed it, by then I had had enough and said to her to leave it alone and finish dressing it, I was amazed when she then opened the ribbon dressing and started to push it in on top of the old one!

I let her finish, thanked her and left, when I got back to my sisters, I sterilized a pair of stainless steel tweezers, removed the outer dressing, removed the ribbon she had packed over the old one, removed that as well, cleaned the wound, repacked it with the remaining part that was left and redressed my foot.

Luckily the next day was Monday, and could then have it done by the practice nurse at the surgery, who couldn't imagine how a supposedly proffessional nurse could make such a hashup of something that is basic

 

[donnellysdogs]

Hi Ali.

Funnily enough, it was staring her right in the face, I had my 5th right toe of the right foot removed on the 19th November 2014 and was having my dressing changed daily in the week at another surgery as I had to move from my home to my sisters as I wasn't allowed to drive and had to offload it as much as possible.

The weekends were covered at the local hospital by community district nurses, and this is where I found a vast disparity in experience and knowledge of community nurses, not good.

Things like not having sterile scissors, or tweezers with them, and not being able to get them from the hospital.
On the occasion with the tap water, I brought all the dressings and an aerosol of saline solution put out for her to use, but because she didn't know how to alter the bed, while I was dealing with that I didn't notice where she got the water from to clean the wound.
I only found that out after she had finished dressing the wound and while she was clearing up, I noticed there were no empty plastic tubes that are used to contain the saline solution, so asked what she had used as she didn't use the aerosol one I brought.
She had used tap water, and didn't know the aerosol contained sterile saline, even though it was written all over it!

I also had a ribbon packing dressing that had to be changed every day, as the little toe had been taken off back to the metatarsal, it left a hole nearly 25mm deep, that usually took a length of 100mm ribbon to fill it, and left around 80mm to remove the next day.
On this occasion the nurse had washed the wound and then started to dry it, so I queried why she
hadn't removed the ribbon, she said she had washed it all out, which patently she had not and I could still see it in there - She wouldn't have it and argued with me that it had all dissolved, in the end I relented as she said I was being aggressive, but then she started to try and pull it out, and then squeezed it, by then I had had enough and said to her to leave it alone and finish dressing it, I was amazed when she then opened the ribbon dressing and started to push it in on top of the old one!

I let her finish, thanked her and left, when I got back to my sisters, I sterilized a pair of stainless steel tweezers, removed the outer dressing, removed the ribbon she had packed over the old one, removed that as well, cleaned the wound, repacked it with the remaining part that was left and redressed my foot.

Luckily the next day was Monday, and could then have it done by the practice nurse at the surgery, who couldn't imagine how a supposedly proffessional nurse could make such a hashup of something that is basic

Incidents like that should be reported to the CQC Inspectors.

I'm so sorry that you have been through such hell.

 

[Ali H]

It is bad isn't it, we have also had abysmal DNs here, I have no idea how to host a picture here but I have one of a dressing that came off within hours. I find them very patronising too!!

Ali

 

[Ali H]

Update, the swab showed he needs 2 lots of antibiotics, flucloxacillin and metronizadole, so the infection has well and truly taken hold. I am beginning to become more than a tad concerned.

Ali

 

[Secudus]

Ali...

Haven't been on Metronizadole, but flucloxacillin and I are close friends!

I would have thought a drip would get to your Dads infections quicker that oral antibiotics, but what do I know.

I tried to get the Vascular team to use "Granulox" but to no avail, basically was told that they don't change medication when it's having good effect and then said the NHS Podiatrist that had been using this in trials was probably getting a back hander from the manufacturer to promote it.

Condescending Consultant!!!

I actually contacted Mike Green and asked if there was any chance of him contacting my Podiatrist and seeing if there was a way I could have a trial, he said he would welcome a call from my Diabetic Podiatrist and gave me his email - I passed it on to him, but never got any confirmation he actually spoke with him!

See here...

https://woundcare-today.co.uk/support/uploads/1415203991case report document.pdf

 

[Secudus]

Ali...

You should ask about using a VAC, either the KCI ACTIVAC unit which costs £140 for three days rental or the PICO VAC, that goes for £120 and works for 7 days.

http://www.kci-medical.co.uk/cs/Satellite?blobcol=urldata&blobheadername1=Content-type&blobheadername2=Content-disposition&blobheadername3=MDT-Type&blobheadervalue1=application/pdf&blobheadervalue2=inline;+filename=409%2F759%2F11-0136+VLU+deck+by+Dr++Lantis%2C0.pdf&blobheadervalue3=abinary;+charset=UTF-8&blobkey=id&blobtable=MungoBlobs&blobwhere=1226678106234&ssbinary=true

VAC NPWT is the dogs b#llicks for chronic wounds, everytime I've been allowed to have one my static wound has healed, visibly more in 3 days than it had in 4 weeks using the likes of Inadine or Iodoflex dressings.

The problem is INSTEAD of following through until closure, they stop using NPWT after a week and because of the bad circulation the wound stalls under a carpet of slough that the two dressing above can't shift!


Your Dad if he was allowed to use a VAC would have to get the infection under control and then get them to debride the affected area's before using a VAC.
Your Dad could go home with either models, but if there is a lot of exudation they would use the KCI unit as it can collect the fluid in a canister, where the Smith & Nephew PICO hold's any exudation in the dressing.

Just google about the use of NPWT and see the results, then ask your self why its not used more, especially in regard to diabetic ulcers, and then bloody push to get them to change what their using now as from what I've seen of all the people I've spoken to over the last 28 months of sitting in NHS waiting rooms they have little hope of healing their conditions and end up losing a limb...

 

[Ali H]

His leg is reasonably ok at the mo, it has never ulcerated but seeps fluid and scabs in multiple small spots. The infection is his toe believe it or not so not suitable for this gadget I imagine.

Ali

 

[Ali H]

The granulox link is great, what a product. Why isn't it in general use eh? Something so effective should be the first port of call.

Ali