Why can’t lymphedema limbs be amputated?

[ulverin]

I want to get RID of my most lymphedema affected limb. I know it's not easy living as an amputee, it has it's costs and difficulties, but I do think it would be much freer than the life with heavy, ugly, high maintenance limbs. It's not like I can walk with these anyway. Why is amputation not a good treatment? I understand that lymphedema makes the whole system malfunction. But wouldn’t it make sense, that if the most non-working area was removed it'd bring ease to the rest of the body? I'm sure this has been tried at some point for some people - does anyone know?

[Lynora]

Oh Ulverin - is there anyone you can talk to? If not a friend, then a psychologist perhaps? Someone who can listen to your pain?

Amputation is not a solution. The consequences are life changing, or worse. Please, talk to someone.

[veriterc in reply to Lynora]

Have you tried M.L.D? It doesn't work for everyone, but it worked for me. To get it, I contacted my M.E.P in Brussels, who leant on local NHS providers in UK, and kick-started the process off with £2,000 of treatment in a private hospital. Contact them NOW before we leave EU - they are still working. Or what about the clinic in Oxford that is having some success with an op? This is where Macmillan or Maggie's should be advising you, but I wonder if the expensive TV ads we are seeing at the moment are reality.

[Kallenubble in reply to veriterc]

Veriterc - I’m curious to hear more about the way you got MLD treatment by going a political route; I never heard of that before. Is that the only way you were able to secure funding, and if so, why? ( I live in the US so this doesn’t apply to me, but I’d like to understand this better). Also, how did MLD work for you? I’m having it every ten days or so but it doesn’t really reduce the swelling - unless things would be worse without it?

[veriterc in reply to Kallenubble]

In Britain we have the NHS - an under-funded national health service which looks at cost, then decides it can't afford to provide treatment! But, as the Minister in charge is always a political appointment (usually a light-weight politician wanting to get public exposure) this means that they are sensitive to political heavy-weight string pulling - or pushing as in my case! However, it sounds as if M.L.D. isn't working for you - although over here we usually start with X amount of days of daily treatment, then go on to regular massage.

However, have you looked at the new operations being pioneered? We have one centre in Oxford, and I know the Germans are in to this. Keep and eye on aftercancers.com/Lymphoedemia as I am about to write about this. And good luck.

[Kallenubble in reply to veriterc]

Hi again - sorry for the late response! That was interesting to hear. I knew about th NHS being underfunded, but ad no idea politicians would be willing to help individuals with health issues, as a political move.

Yes, I would love to have the initial two week MLD / bandaging etc. Treatment, but I doubt I will be able to unless I pay a fortune. My insurance is miserable enough as it is. My mom, who lives in Germany, had a three week cure type stay in a lymph specialist clinic in the Black Forest, and she definitely reduced in size. As for surgery, that too would be super expensive and you’ll still have to wear garments for the rest of your life after. I did research that Centre in Oxford a few weeks ago. They might not even take me since my leg isn’t that horrible in width ... but I’m definitely keeping it in mind. Thx for the reply!!

[Angelil in reply to Kallenubble]

Hi, the LVA sugery at oxford works best for mild swelling (stage 1 and 2) and once they have done the initial scan they are very open about what they think your success rate will be x

[Kallenubble in reply to Angelil]

Hi Angelil, thanks for that info! I didn’t know. Do you know anyone who’s had this surgery? I sure wouldn’t mind having an excuse to travel to Oxford!

[CumbriaKC in reply to Kallenubble]

I had the LVA surgery at Oxford just over a year ago. My leg was not not hugely swollen but it was heavy and uncomfortable compared with the other one and I was restricted in footwear choice because of foot and ankle swelling, which became more painful towards the end of the day, despite wearing grade 2 compression stockings. The initial scan showed I still had some viable lymphatic vessels so I was considered suitable for surgery. I am pleased with the result - my leg measures slightly less all over and feels fairly normal - although I still wear my stocking routinely, especially for walking and exercise, I can now occasionally go bare-legged and wear a dress and normal shoes without pain or embarrassment. I am glad I had the surgery as it has helped me to feel more “normal”. The Oxford clinic was excellent and they were very honest about the chances of improvement, with no pressure to go ahead. They tell you immediately if you are not suitable for surgery. I hope this is helpful.

[Angelil in reply to Kallenubble]

Hi, I had the surgery on both legs 2 months ago. My swelling was very mild as I controlled it well with massage, compression and diet but I didn’t want it to get any worse and wanted to make it more manageable. It’s early days but I don’t have to massage for as long and can miss days out. I can go for short periods of time without compression so overall even though I don’t think the size has changed too much, I would def say it’s easier to manage! X

[ulverin in reply to Lynora]

I have people to talk to, but it doesn't change my pain or fix my quality of life, although it's better than not talking to anyone. I had a good attitude with life and I was getting into a good mood after cancer, before lymphedema, so it's not like I just want to complain about everything and be stuck in life. It really is a huge problem and I have a lot of questions that I feel the need to have an answer somehow.

I'm not realistically expecting that amputation would be a solution for me, but it's been bothering me a long time, why. If you know how to explain it, it would be nice to understand. In many cases, removing parts of the body is an option, when they do not work well and cause much trouble! Why is it that with lymphedema things would even get worse? How do they know to assume that? I understand that lymphedema means, that the whole lymphatic system is compromised, but still - aren't the affected limbs more compromised than rest of the body?

[Kallenubble]

Hi ulverin

I’m so sorry about your feelings about your lymphedema, and your (potential) desire for amputation. I can’t say that in some theoretical way, the thought hasn’t occurred to me on very depressed days - and maybe it would occur more frequently if my swelling were worse and affected more of my limbs. What is the extent of your lymphedema, and for how long have you had it? What kind of treatment have you received, if any? From what I have read and heard, also on other lymphedema sites, depression and hopelessness are not uncommon with this chronic illness. That’s one big reason people reach out to each other on sites like this one, to feel less alone and get support from others who are in the same boat. Additional therapy, of course, is often necessary, as it is for so many people affected by serious illnesses and chronic conditions. Especially since some such conditions can be helped with surgery and body part replacement, we sometimes feel trapped inside our bodies and wish we could get rid of or replace parts of it. I remember idly wondering sometimes why I couldn’t get a whole new spine during my years of back pain, or why some foot amputees can walk better than I could with my badly sprained and only slowly healing ankle.

Medically, I have no idea why amputation wouldn't be a solution, but I’m pretty sure it hasn’t been tried for lymphedema. I wish you all the best finding help, and also hope you stay here to share your feelings and experiences, thus encouraging others to do the same. I know most posts here are more focused on giving and getting tips and practical advice, but I’m sure we all need to deal equally with the emotions that are part of this experience.

Hugs, Kallenubble

[ulverin]

Thank you for your kind message. I realize that my original post came off sounding very emotional, but I actually am interested in why amputation is not considered an option for lymphedema. Maybe I should find a surgeon who doesn’t mind me harrassing them a bit with my questions. The only answer I've found this far, is because it's manageable with other treatment. I understand that amputation is a radical change in life, but the amount of upkeep that the limb requires daily is a lot of work and I think that some amputees do have a better quality of life than some lymphies. I don’t know about it a lot, but I do know that some amputees have lots of pain while others almost none. Of course the possibility of minimal pain sounds wonderful, and the routine of an amputee could be less time consuming than lymphedema. Is it so, that the rest of the body will still have as much lymphedema, even if the area with most dysfunction is removed? The way I see it is, that when there are broken parts in lymphatics, the waste that is stagnant and then is made to move creates lots of stress to the rest of the body, which then might in time get too overwhelmed with over working, and lymphedema occurs in the other parts of body too. In that sense, it would make sense to take away the parts that are creating most of the stress. This is my chain of thought, I don’t know if it works like that, which is why I'm wondering.

[Lynora in reply to ulverin]

Hi Ulverin. I just spent 40 minutes typing a reply to you, but hit ‘cancel’ as I just didn’t want to make you read the story I had written. Long story short, I had recounted my experience with a very dear friend. He had all sorts of complications following cancer of the penis. He hated his oedematous leg, but decided as long as he was able to function, albeit not as efficiently as he was used to, he would cope. He did well for 5 years (compression/MLD) but following hospitalisation for severe infection, a doctor, with limited experience of lymphatic diseases, said an amputation was a final course of action. Sadly, it was the wrong course of action. He died as a result of sepsis and other complications.

A few months ago you said that you may be able to use an IPC machine - did you ever get one?

[ulverin in reply to Lynora]

That’s sad for your friend and I'm sorry for your loss.

I don’t know what an IPC machine is, are you sure that wasn't someone else? I have a pneumatic compression device at home. I had infectious diseases in the winter, so I went a while not using it and now I've began again.

[Lynora in reply to ulverin]

IPC is intermittent pneumatic compression - I’m glad you’ve started using it again.

[Hopefullva in reply to ulverin]

I just had LVA surgery my arm and I feel my lymphedema has got worse. The thought of amputation has crossed my mind. Your not Ali e in your thinking.

[DeadfootMo]

OMG I hate the fact that I have large legs, and horrendously swollen feet that overhang on shoes with my vienous lymphodema problem and I can not wear compression due getting extra sore pink ridges in my legs and feet, pins and needles excessively and feel that my circulation is seriously affected by compression which also gives me pain, but I would never suggest that my feet or my legs should be amputated. Anyone who does have this done will obviously complicate their health problem further so not leading to any improvement at all. Ask to see a specialist to talk about what can be done to alleviate the problems you are having and have faith it will work.

[Jude4]

Hi Ulverin,

I'm in Norwich, UK. I'm in my 30th year of having LE, and had no treatment at all for the first 7 years, after my op for cervical cancer. No-one seemed to know anything about it, and even several years after the LSN was set up, loads of medical people knew far too little, and we early LSN members had to take their leaflets to our GPs.

I used to feel that my leg seemed to be encased in cement. It was so painful and heavy.

This year, I discovered that there is treatment available at Chelmsford Hospital, 2 hours' drive away. It is to tie up the remaining lymphatics to veins, so that the lymph finally is moved away. My wonderful GP referred me, but my lymphatics are not good enough for this treatment. However, the Consultant has offered me Liposuction, and I have signed up to this. It will hopefully take my big leg down to the size of my normal leg, but I shall have to wear my stockings for the remainder of my life, 24/7. I consider this a small price to pay for a leg which will be flexible once more instead of swollen and stiff.

Until this year this kind of treatment was extremely costly, and in its infancy. But this year it became available on the NHS, which makes it accessible to as many as possible, including me, even if I do have a long journey before and after - fortunately a member of my family does the driving, bless him!

Would the Liposuction be a possibility for you? Ask your doctor to find out. Good luck! And age seems to be no barrier - I shall be 80 next month!

sincerely, jude4

[Hidden in reply to Jude4]

Hello,

So pleased to hear you have secured some funding for Liposuction. It is not routinely available on the NHS unfortunately ☹️.

My CCG for example won't fund it but Professor Mortimer is currently putting together a fourth bid for me as my ever increasing arm has damaged my spine.

Wendy

[gvduds1]

i can empercise with you, i have severe lymphodema in my abdomen which is progressivly getting worse. i have reoccurring infections which mean i end up in hospital. because of the size and weight of my abdomen im in constant pain in my knees back and stomach, i have extream difficulty in mobilising and i have also asked for an apronectomy to make my life worth living rather than just exsiting. in mycase they wont operate as its too dangerous. the wound would be so big infection could get in. the amount of blood loss is severe and because of the lymphodema the skin is toughened and would be poor to heal if it did heal and they reckon id be worse of if i didnt die on the table. i could only assume some of the reasons given to me could also apply to you and thats why they wont operate.

[Hidden]

Wouldn't the lymph back up somewhere else ?

[megs2]

Ulverin,

I have primary lymphodeema, affecting both of my legs & my abdomen. I also have complicated spinal issues, making the added weight of the lymphodeema in my legs, particularly my bad one an issue. I imagine mine is not as bad as many people on the site & I'm currently trying to get money for a lymphodeema pump & more efficient stockings... money is a problem as I'm on disability & there is little help in Ireland for lymphodeema. I understand your question re leg amputation if the worst came to the worst & the leg became unusable & terribly distorted, as my late husband had a prosthesis & sometimes the options seems tempting. I also realise the idea for many would be abhorrent. However I think if the leg was sufficiently compromised & damaged, non funtional, to make you feel like this, that it would never heal post amputation, as there would be an extensive wound to heal. Without healing, sepsis would follow. Also, from experience nursing & with my late husband, a partially healed leg is impossible to fit comfortably for a prosthesis & to mobilise. Phantom limb pain, is also an issue & as far as I understand it, the lymphodeema problem can just occur higher up in parts of the body, above the amputation, but I may be wrong re that, as I am new to the delights of lymphodeema! Hang on in there & see if theres more support out there for you. Meg

[ulverin in reply to megs2]

Those are some good points. Maybe amputation could end lymphedema if it was in the ends of the limbs and mild, but then it wouldn’t be an appropriate treatment, because a mild lymphedema would better fit LVA or other surgery or be manageable in other ways. Sigh. It's hard to have a problem that just has no good solution.

I hope that you will get better treatment soon! That seems to be a problem for many people in different countries.

[alfie19]

I have been told by the LE clinic not to have any operations or injections on tbe affected limb as complications can arise and make things much worse unless it was an emergency I have an LE Emergency Card to carry on me for clinical reasons

I was told this after i had an operation to remove cartilage from knee on the leg which had LE. After the oper. I was parallased from the waist down for 2 days until i was able to walk again. That leg and knee joint is still very stiff and painful the surgeon did warn me I could have further problems after the oper. I would take advice from LSN before having any operation.

[alfie19]

How many members with LE use a wheelchair I have to use one when needed it is such a relief to get the pressure off my joints it makes me feel happy again as i can only walk a few steps before the pain is unbearable then I have to slide my feet to move around. i use a mobility scooter to help me get around outside.

I get confused when reading the leaflets from LSN that walking is good exercise and helps move tbe LE fluid around but in my case the pain and swelling gets unbearable and much worse that i have sleepless nights due to the pain. So in my case walking makes LE much worse.

[Booboo69]

I also have lymphedema in both legs, right being severe, I do not need psychological help as that won't make it look better, I totally agree amputating limb, am going to look into it