Hello everyone - I am a Newbie to this forum , but a long term Type1 diabetic since 1975. I am looking for other Type1 diabetics who have had to 'consider' the prospect of a midfoot transmetatarsal amputation and the consequences regarding future mobility . driving and continuing to work. The medical advice is digestible and understandable, but it the lifestyle consequences after that I am not at all clear on - can I get insurance to drive ? will I be considered disabled ? . I am faced with a choice of operations and wondering if its is time to bite the bullet and go for the more extreme midfoot transmetatarsal amputation. Does anyone know of a suitable patient group I could speak with please?
-
Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
-
Learn more about joining the Diabetes UK Support Forum team here: https://forum.diabetes.org.uk/boards/threads/volunteering-opportunities-why-dont-you-join-us.112862/
Considering a midfoot transmetatarsal amputation - what should I be aware of following the op?
- Thread starter Patrick J
- Start date
- Status
Leadinglights
Well-Known Member
- Relationship to Diabetes
- Type 2
I will alert @MikeyBikey as he I believe has had an amputation and while his situation may not be the same as yours he may be able to offer some advice.
Hi everyone - I think this is my first post ever (if this works 🙂 ). I am a long term type1 diabetic (1975) with ongoing right foot podiatry issues since 2005 (4th & 5th toes amputated and metatarsal bones resected back) post a diabetic foot infection- cut between the toes.
I have managed the ups and downs, the regular podiatry visits up until Jan 2020- when I broke my right foot - 'ligament' attached to the base of the resected 5th metatarsal.
..... I gained weight during lockdown (15kgs) and have been in an air-cast and using crutched pretty much most of the time since Jan 2020. I have been trying to heal a series of pressure ulcerations. (bony pressure point along the resected 5th metatarsal) . I do periodically get healing and I do gradually trial specialised footwear and orthotics (7days) with crutches. But unfortunately - the key ulcer area repeatedly breaks down under pressure. The podiatry clinic are getting tired of me and I am loosing my positivity and strength to keep trying to get back to semi -normal or walking moderately unaided or aided by crutches.
Sorry about the rant, but recently I have been told by the orthopaedic team that I should consider a ' mid foot transmetatarsal ' amputation and hopefully remain ulcer free for longer. Told I should now think about my quality of life if I m happy spending so much time with podiatry and doing dressing changes at home.
I have also been told that I could have a less severe operation- ie a slightly less invasive 'cleaning up' operation around the original 4th & 5th resected bones( 2005) , but they are not sure how successful that will be long term and if I will remain ulcer free for long. Basically they are now saying that a ' midfoot transmetatarsal amputation is inevitable' .
I am wondering ...If I bite the bullet now and go ahead with this more severe operation- what should I consider regarding my quality of life ?
Will I be disabled ? Can I get car insurance and drive ( I am not always close to public transport )? Will I need lots of cushioning in specialised footwear ? Will less foot mean less area to take the pressure of my weight ? ( 98Kg - 182cms ) Will I be ulcer free and free of bony pressure pain? Can I continue to work - (surveyor) . Can I look after my elderly father, will I be able to drive him ?
Is their an amputee patient group to speak with maybe ? Patients who have faced similar decisions or have experienced similar ? Why are the clinic so bad at explaining the post- operative recovery period and what to expect after the operation ? I have asked to speak with a patient who has been through this type of operation ..... but I had to ask !!! .. the hospital did not suggest any kind of support or any psychological help, not even to contact Diabetes UK... a bit of poor performance from the UK's leading clinic. Many thanks for reading guys- hope to hear from someone out there 🙂🙂🙂🙂🙂
If anyone can advise of their own experiences or where I could go for some help and guidance it would be very much appreciated. Sorry for all the questions .
Kind regards PatrickJ
I have managed the ups and downs, the regular podiatry visits up until Jan 2020- when I broke my right foot - 'ligament' attached to the base of the resected 5th metatarsal.
..... I gained weight during lockdown (15kgs) and have been in an air-cast and using crutched pretty much most of the time since Jan 2020. I have been trying to heal a series of pressure ulcerations. (bony pressure point along the resected 5th metatarsal) . I do periodically get healing and I do gradually trial specialised footwear and orthotics (7days) with crutches. But unfortunately - the key ulcer area repeatedly breaks down under pressure. The podiatry clinic are getting tired of me and I am loosing my positivity and strength to keep trying to get back to semi -normal or walking moderately unaided or aided by crutches.
Sorry about the rant, but recently I have been told by the orthopaedic team that I should consider a ' mid foot transmetatarsal ' amputation and hopefully remain ulcer free for longer. Told I should now think about my quality of life if I m happy spending so much time with podiatry and doing dressing changes at home.
I have also been told that I could have a less severe operation- ie a slightly less invasive 'cleaning up' operation around the original 4th & 5th resected bones( 2005) , but they are not sure how successful that will be long term and if I will remain ulcer free for long. Basically they are now saying that a ' midfoot transmetatarsal amputation is inevitable' .
I am wondering ...If I bite the bullet now and go ahead with this more severe operation- what should I consider regarding my quality of life ?
Will I be disabled ? Can I get car insurance and drive ( I am not always close to public transport )? Will I need lots of cushioning in specialised footwear ? Will less foot mean less area to take the pressure of my weight ? ( 98Kg - 182cms ) Will I be ulcer free and free of bony pressure pain? Can I continue to work - (surveyor) . Can I look after my elderly father, will I be able to drive him ?
Is their an amputee patient group to speak with maybe ? Patients who have faced similar decisions or have experienced similar ? Why are the clinic so bad at explaining the post- operative recovery period and what to expect after the operation ? I have asked to speak with a patient who has been through this type of operation ..... but I had to ask !!! .. the hospital did not suggest any kind of support or any psychological help, not even to contact Diabetes UK... a bit of poor performance from the UK's leading clinic. Many thanks for reading guys- hope to hear from someone out there 🙂🙂🙂🙂🙂
If anyone can advise of their own experiences or where I could go for some help and guidance it would be very much appreciated. Sorry for all the questions .
Kind regards PatrickJ
Last edited:
Thanks Inks - I have not posted before today ... I think I have put a little more detail into a main message board message .. Have a lovely evening. Kind regards PatrickJ
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Welcome to the forum @Patrick J
It felt like there was quite a bit of overlap between your threads, so I’ve merged them to keep the responses all in one place.
Feel free to call the Diabetes UK helpline Mon-Fri 9-6 if you’d like to chat through your decision and have a bit of a sounding board.
There was a thread where some members compared notes of their experiences regarding amputation here which might be worth a look?
It felt like there was quite a bit of overlap between your threads, so I’ve merged them to keep the responses all in one place.
Feel free to call the Diabetes UK helpline Mon-Fri 9-6 if you’d like to chat through your decision and have a bit of a sounding board.
There was a thread where some members compared notes of their experiences regarding amputation here which might be worth a look?
Thank you .
Thank you that is much appreciated.
Thank you very much that will help me keep track of replies. apologies for the duplication- new to posting
Thank you Lyn, I will bear that in mind. I guess I am still a bit attached (exclude the pun) to the remaining three toes and the resected 4th and 5th metatarsals .. 🙂 no infections just repeated pressure point ulceration when I go into trailing specialised foot wear and putting more weight through the foot .. it wont last more than 48 hours - then back into the old reliable air cast walker and crutches when outdoors.
Drummer
Well-Known Member
- Relationship to Diabetes
- Type 2
I thought I'd replied - maybe not - though it looks as though you are doing your best already I had a sudden onset of problems with my lower legs and feet and got two appointments with my GP face to face at the height of lockdown.
I did all I could to improve the circulation for my whole leg, cold/hot/cold water in the shower - I can take the shower head off and direct it at close range, massage of my leg, I did not sit for any prolonged time but got up and moved - danced to Status Quo, but it seemed to get the blood flowing. I always used Nordic walking poles when out of the house so as to take the strain off my feet - I do have a fused joint but the GP was very concerned when I saw him - or rather when he saw my feet, so I think it could have been worse.
My thought was that I needed to keep my blood moving briskly so as to give my toes the best chance.
I did all I could to improve the circulation for my whole leg, cold/hot/cold water in the shower - I can take the shower head off and direct it at close range, massage of my leg, I did not sit for any prolonged time but got up and moved - danced to Status Quo, but it seemed to get the blood flowing. I always used Nordic walking poles when out of the house so as to take the strain off my feet - I do have a fused joint but the GP was very concerned when I saw him - or rather when he saw my feet, so I think it could have been worse.
My thought was that I needed to keep my blood moving briskly so as to give my toes the best chance.
Hello Patrick.
I have had that surgery. I had all the toes on my right foot amputated in April 2022. Are you still looking for info? I would be willing to share into. I also care for my mother full time and have done throughout my recovery. Nicky.
Thank you Drummer ..... I am delighted you found a way to improve your circulation.
Hello Nicky
Thank you very much for your reply and apologies for not responding sooner.
I have been very busy with work and a bit stresses to be honest . I am on holiday now and playing catch up with my own emails and messages/ posts here.
Thank you for offering to share information on you own very recent experience, which I really appreciate. And I hope you are recovering well from you April 2022 operation. Would you like to discuss more privity off the open platform ? Maybe we can share personal email addresses or mobile no's- what is best ?
Sorry Nicky I am not very good with or that familiar with posting but I would imagine their is a way of sharing a private message ? Or if you are more comfortable sharing here please let me know what is best to do.
Since my original posts there has been one or two developments .
1. Basically the surgical team think the the lesser ' clean-up' operation is now off the menu . as they explained the pressure point and problem of recurrent ulceration will simply move along the bone (5th met) or to the next resected bone (4th met) and I will inevitably keep coming back to clinic with pressure point ulcerations and / or infections . There just is'nt enough padding / tissue to cushion the resected bones and the existing tissue has moved under the foot away from the bony areas.
2. The 'mid-foot' trans-metatarsal has become more of a Trans-metatarsal amputation and I will end up with less than half of my right foot . The will use the tissues and skin to make as good a tissue pad for the resected bones as possible and hope for the best. There are no guarantees I will not end up coming back with ulcerations and/ or how long this operation will be effective .
I asked very recently 27th July - if this is the slippery slope and if this doesn't work could I loose my heel and ankle and the amputation site eventually moves above my ankle. The surgeon's replied that some patients opt for a below the knee amputation. This being a more definitive lifestyle / quality of life decision .. where with a below the knee - I would no linger be a diabetic foot / podiatry patient but a ' prosthetics' , circulation , physio - rehab patient and they would achieve a very good fit between the stump and the prosthesis. Apparently ulcer free, I would no longer have to have fortnightly and or monthly appointment's at the foot clinic. This is a quality of life decision apparently. I am now discussing with my friends and family.
I don't believe I am ready to 'make 'this decision just yet but it is now on the menu and I am willing to explore further ....I am not sure I am strong enough mentally but equally I am so tired of the endless podiatry appointments and pressure point ulcerations.
Let me know Kicky what is best for you? I would like to hear about your experiences and how you overcame your challenges.
Best wishes for a speedy recovery .
Kind regards
P
Robin
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
If you look along the bar at the top of your screen, there should be a little envelope symbol on the right, next to the bell for alerts. If you click on this, a drop down box will appear that includes 'start a new private message', click on that, and you can send a private messsge to someone else on the forum.
Occasionally this isn’t enabled, because new people have to do a certain number of posts first, to prove they’re not a spam bot or anything like that, so if you can’t find it, one of the mods or admin can get it enabled for you.
Hi Patrick.
My experience has been like a roller coaster of emotions. In the main I ve stayed on top. When I was in hospital I felt so out of control but looking back I was really ill with it. Aside all that the actual amputation has healed marvellously took about 12/13 weeks to be bandage free which I believe is quite good going. It looks like a small Cornish Pasty foot now. I'm very protective of it and am scared to wear shoes incase I get any sores. Apparently the NHS shoemaker will soon make me some!!! I was up and walking (to the hospital loo and back) with it in 24hrs using a Zimmer frame and a specialist off loader shoe which stops any pressure being put on the wound. I was home about 19 days after the op, they wanted to chuck me out sooner but I had been so ill before the Vascular Consultant said no. Luckily we have a stair lift because I am only just managing stairs. My left foot developed an ulcer on the heel because of all pressure from my right so that has set me back a bit. After the op I needed the would dressed every 2/3 days for about 8 weeks. It has been very tiring, my fitness has gone down the pan. However the whole time I cared for my mum (94 with Dementia) and just carried on carrying on. Im sure there is more, ask any questions and I will answer. They cut my foot to save my leg for that I am grateful. I went to some dark places during this time but made it through and whatever happens you can too. Nicky.
Thanks for that.
Thanks - I found it .
That should say 10 days not 19
- Status