Primary Lymphoedema for 35 years..: Dear friends- I’ve... - LSN

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Primary Lymphoedema for 35 years..

LydiaCyrano
LydiaCyrano
13 Replies

Dear friends- I’ve had this condition for anout 35 years and the leg shows no pitting now which I believe means it has gone past a certain stage of recovery, with one leg a third bigger than the other.

I am now wondering about the pros and cons of having liposuction done.

Could any kind person out there relate their experience so I have a better idea of whether to go down this path or not?

Thank you so much.

Lydis

13 Replies
oldestnewest
lovesradio

Hi Lydia

Others on this forum have had this procedure so I hope you hear from some of them x

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LydiaCyrano

Thank you for your kind reply. X

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Libmeg

Hi Lydia, I had liposuction in April 2017 wasn’t sure at the time if I was doing the right thing but so happy now with the results.The op to me was a chance to have my r leg match my left after years of despair and although op was not pain free the results were worth every bit.My legs are near normal I have slim ankles again and clothes shopping is no longer a chore I personally would recommend the procedure. I now love my legs again,still wear my garment to maintain leg but that is part of my condition I have accepted and have resigned myself to.Hope all works out for you Take care of yourself regards Linda x

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selena52
selena52
in reply to Libmeg

Hi, may I ask about your liposuction? What was your surgeons name and which department does he work in? I'm asking because the surgeon who performed my liposuction is in Cardiology and I'm wondering whether that's the norm for this op. My op wasn't successful but I feel it could have been the aftercare that let it down. The surgeon has now offered me a Holmans Procedure which I had successfully 30 odd years ago, but I'm worried about the aftercare I will receive as it is a major op, albeit that I really would like to have it done, as my left leg has been fantastic all these years.

Thank you

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Snaomi

Hi Lydia. Had my leg done a year ago in February. So please with the outcome. It is not a cure you will need to be very diligent about wearing your compression garment(custom flat knit). I am so pleased that this October I will be having my right leg done. Hope this helps you.

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LydiaCyrano
LydiaCyrano
in reply to Snaomi

Dear Snaomi

Thank you so much for answering my query. Can you tell me a bit more about the procedure- how it affected your life, did you take a lot of time off work, was it painful, what do the stockings look like? Thank you so much.

Lydia

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selena52

Hi Lydia, may I ask who is going to do this operation, or what department of the hospital? I had liposuction some years ago, the surgeon is a Professor of Cardiology who has some interest in Milroys disease, which I'm guessing is what you have? I was born with it in my left leg and then it presented in my right leg when I turned 50 which was devastating as you can I'm sure imagine. The op was performed on my right leg and in itself was pain free until the drain comes out, which is a lot of pain but only for a matter of seconds. My leg was very slim when the bandages came off, which was fantastic, though I was warned it would get a little bigger once it had settled down and I was walking normally. Unfortunately the aftercare was pretty dismal, in that I was given a pair of very tight stockings which were in fact thrown onto the bed by the nurse in outpatients and told I could leave when I had them on. She then left the room. It took me a long time to get them on as my leg was very sore and the stockings very tight. If the aftercare had been better and I had been checked on regularly afterwards I think the op may be considered successful. I did tell the Professor my feelings about it, because he said that most people need it done twice, and I understand that now his patients are kept in firm bandaging for two weeks after the op to allow the tenderness to settle, before moving into the stockings. My leg was very uncomfortable for two years afterwards, it felt like there was a metal rod pulling at the inside. So I would say, try to find out about your surgeons other patients who have had this procedure, or at the very least what his success rate is and what he is measuring that success rate against.

Thirty years ago I had Holmans Procedure on my left leg, which leaves scaring but to my mind has been extremely successful. They don't do it very much now because it is a major op and they think the patient will be unhappy about the scars. I am scheduled to have this op later this year on my right leg, and I'm looking forward to it as it will take away all the heaviness and not least I will be able to wear boots and skirts/dresses again instead of stuck in trousers and trainers all the time both of which are very depressing. My only hesitation is that it will be the same surgeon who did the liposuction so in the meantime I'm trying to find recommendations for a surgeon who performs the Holmans Procedure. I'd be very interested to hear what you decide and how you feel the op went if you go ahead with it, please.

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LydiaCyrano

Hi Selena

Thank you for your very thorough reply. I can’t tell you how much it means to talk to others about this very difficult disease.

I have no op booked yet - but might go with The Manor in Oxford, though it’s private so am still hoping someone can tell me it’s available on the NHS.

I don’t have Milroys as no show until I was pregnant at 26, though I always had a very slightly larger ankle from birth.

I see that some people are very anti de- bulking unless it’s an emergency:

“The complications involving the other debulking surgeries applies to this one as well. In today’s world, a debulking surgery should only be used for the most extreme, potentially life threatening lymphedema swelling or for the terrible disfigurements of lymphatic filariasis, genital lymphedema or removal of massive localized lymphedema.”

But your experience has been very different hasn’t it. It’s all very confusing. I hate being a man, as it were, every day, with trousers and big shoes, and only long dresses with weird shoes underneath.

Can I ask where in the UK you are?

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selena52

Hi Lydia

Im so sorry I missed your message to me. Im in West London, my surgeon works at Charing Cross and Hammersmith Hospital. His name is Professor Nigel Standfield. As I said, I didnt feel the liposuction op was a success but he tells me that most people need 2 and I only had 1. Also the after care since my op has been improved. Many people seem to have good results with liposuction, I maybe was unlucky. Why not see if you can get an NHS referral to him? He does do liposuction privately too.

He offered me, finally, the operation I really wanted, only when I broke down in front of him as I was particularly depressed that day. However I now find that I need a knee replacement so that is going to take priority because of the pain Im in, as opposed to tiredness and heaviness of my legs. Do please let me know how you get on/have got on, it goes without saying I wish you the very best of luck.

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selena52

Sorry, I forgot to add, initially I saw Professor Bernand at St Thomas' hospital. A nasty piece of work who had now fortunately retired. So it may be worth finding out who his successor is. St Thomas' hospital also did tests on my genes as they are trying to find out the causes. The guy who was in charge there is Glen Brice, it seems he is at St Georges Hospital in Tooting now (according to a google search). Also Ealing Hospital had a lymphoedema department on the 9th floor, it may be worth getting the switchboard to put you through to them. The department is named after the guy who did my op 30 odd years ago, Professor Joseph Pflug, a nicer medical man you couldnt meet but sadly now deceased. They may give you some good advice too.

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Snaomi

Hi Lydia, in answer to your questions I can say it took me a month to the day to get the garment on and off my leg by myself. The first month does hurt but not so bad as you might think. By end of 2nd month I was walking 1 to 3 miles. Just need to be careful. The garment is much easier to get on and off when your leg is normal size. I wish they were able to make a better looking garment. I would encourage you to take off at least 3 months. My leg was so big that I immediately lost close to 20 pounds and had a lot more energy. I am having my right leg done this October. The most exciting thing is I have bought some normal pants just waiting for my other leg to be done so I can wear them. It will be nice to dress the way I want to again. Hope this helps you.

Sharon

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LydiaCyrano
LydiaCyrano
in reply to Snaomi

Hi Sharon

Thank you for all this information. And it does sound exciting but nerve racking too! How did you get your stocking on initially? Did you need someone there or did you have some kind of gadget?

How were you spending those 3 months off work? What routine did they suggest or what would you advise?

As for flat knit stockings,which I think you or another person blogged about, they have never worked for me in the past, so I am wondering if they will in the future? Do you not find them too bulky when you’re wearing shoes? I wear round knit, and although they are probably not doing me the greatest good, they are lightweight in comparison.

Is your garment ok to wear at night as specified? Do you get very hot and uncomfortable?

Thanks again for any feedback.

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Snaomi

Hi Lydia. My husband and daughter helped me get my nylons on and off. They were great. As for what I did for 3 months was to take it easy but I did walk or go out to dinner. Lite stuff. Regarding flat knit nylons I wore a class 3 with a class 2 on top. Class 2 comes off at night. After about 6 months I would take off garments for an hour or 2 at night. At 9 months my therapist said I could stop wearing the class 2. I have also found a lighter garment to wear at night. Different doctors have different protocols. Yes it gets hot but I keep a fan and air on me at night. Fortunately for me I am able to find show that I can wear with the garments. It can be challenging finding them and it is just a matter of trying on different shoes.

If I were you I would ask your doctor his protocol for garments as that will be the key to success. I don't always like wearing them but I am diligent about it as it is key to keeping leg small. Also, please know that it takes about 2 years for leg to completely heal inside.

Sharon

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