Newbie

[jen50]

Hi everyone. I'm new to this forum and arrived here by looking for general lymphoedema information. I have primary lymphoedema and deep vein insufficiency, mainly in my left leg below the knee which is enlarged. Since being diagnosed i have found the emotional side of the condition hard to deal with, although I am lucky enough to be completely mobile and without pain. I'm interested if anyone has had any surgical intervention for an enlarged limb in the UK, such as debulking and how it worked out for them. Anyway it's great to have a place to talk to others about lymphoedema issues.

[syrup01]

Hi Jen

Welcome to the Forum where, if you can get your answers, hopefully the support will be there.

I have had lymph node bypass surgery, lymph node transplant surgery and liposuction on my right leg. I have secondary lymphoedema, so I fall into the scope of the first two procedures because before my lymph nodes were removed I had a perfectly healthy lymphatic system. From what I understand primary lymphoedema is harder and riskier to operate with because your lymph system is naturally compromised. The two surgeries were absolutely fine though I'm not sure how successful they have been. The liposuction, which removed over 3 kg of excess fat from my leg, was seriously painful post op, and please don't go into this lightly. The cosmetic procedures take a little fat and sculpt the legs, the same happens here but on an industrial scale.

I wouldn't call my surgeries a success yet, as I can't get enough compression on them, however whatever you are considering doing ask on here, there are plenty of people to bounce thoughts off of!

[Lynora]

I can only recommend that you do lots of research. Talk to your lymphoedema therapists - make sure you are getting all possible forms of treatment such as appropriate compression/bandaging/skin care/MLD/nutrition advice - as much as you can to help yourself from the inside and to get to a point of limb management and maintenance.

There have been various surgical interventions done in recent years - I work with people who have had liposuction for primary lymphoedema, and it has been life enhancing for them and they are doing really really well. However, I also work with people who have had debulking - which was life changing - and not in good way - these people have impaired mobility and long term problems. As I said - do lots of research, and glean as much information as you can before going down the route of surgical intervention.

[veriterc]

Welcome! Since I joined I found lots of helpful info on these Forums (or should it be Forii?!!) I got L. as side effect of cancer op, and although I have tried lots of things, what works best for me is once-monthly MLD (Manual Lymphatic Drainage). Got my first course with help from my MEP (step-by-step what I did on after-cancer.info/Lymphoedema) but now pay for this myself as I just can't take all the put-offs, lost letters and offical dis-interest"

Good luck

[jen50 in reply to veriterc]

Thanks veriterc. I have read about MLd as something you should do along with compression and exercise both of which I do, but have never been shown how to d o MLD. My experience of medics related to L hasn't been great. Swelling, pain and a rash of my feet and legs, which would get worse with long periods of standing or walking, started back when I was 12 in 1977 ish, leading to lots of people poking and prodding me for most of my school years. I was diagnosed at that point with 'hypergammaglobulinaemia purpura' which when you deconstruct it, doesn't mean much! Anyway then I retreated from consultants etc because there was no practical help. I then got diagnosed with L and DVI about 2 years ago when my left leg had become noticeably bigger, so this is what it probably was all along! Sorry to ramble, but i can understand your point about disinterest, though mine was medical rather than official. But back to your point about MLD. I'm about to be referred to a Lymphoedema clinic so hopefully will get more help with management techniques. Good luck to you too with your condition.

[veriterc in reply to jen50]

Although people say they do MLD on themselves, I do wonder - as it seems that the therapist has to use a lot of strength manipulating the lymph glands.

Like you, I am not too keen on medics; I am horrified that our country, that produced Hunter, Nightingale, Flemming and other world-famous medical pioneers, is now a country whose patients aren't expected to live as long as our European neighbours - and politicians are totally un-fazed by this! I intend to live longer - just tocock a snook at them and NHS, so pay for MLD - but am furious we don't get same treatment as Europeans!

[lovesradio]

Welcome to this great forum Jen, a place where we can share, rant, empathise and get love and support

[jen50 in reply to lovesradio]

Thanks loves radio!It's nice to know there is support out there from people like yourself who are generous with their experiences.

[Dodidoos in reply to lovesradio]

Yes I agree loves radio it's very helpful to know their are people who understand each other's Issiues it can be a very lonely life living with everyday health probs it's good to share .💕

[Dodidoos]

Hi Jen 50 I have lymphadema and venous in my right leg ,which swells everyday been told it could be primary but only found out in 2004 .i have had bandaging,and commpresion stockings but none of them suited my skin type as I also have psoriasis , and osteo arthrities all of which exacerbates the lymphadema not much is known over here how to deal with this chronic health problem we just have to live with it really,Moisturising is high on the maintainance management list though. Best wishes Dodi.

[Dodidoos]

Hi jen50. I'm here if you want to chat about your life with lymphadema ,it will also help me too as it does get a bit depressing when the swelling is their 24/7 nobody understands much about this debilitating condition,I've only been shopping on my scooter today and already even without walking it has swollen up it is swelling very quickly these days and without walking much . How long does your leg take to swell after getting out of bed in the mornings?. Best wishes Dodi.😊

[Dodidoos]

Hi there yes this is a good place to start to get it all off your chest I too am a newbie and already found out a lot about our probs. Good luck and feel free to chat whenever you feel the need sometimes family and freinds are a bit to close to keep turning too .👍😊