Yes or no; Laser liposuction for primary lympheodema thats in fatty 'bubble wrap' type form (well what's left is).

[suzie_danger_girl]

I have primary lympheodema. Through self treatment I have reduced this radically, scans reveal whats left is in a lumpy form of kind of globules of fat. I break this up (which is horrifyingly painful) then get my boyfriend to do mld to move it through my system and off. Using this method we have removed 4 inches from my waist this year and comparible reductions all over (including my face).

I see a groupon for laser liposuction, which I dont doubt would break this stuff down, but does anyone have any advice, experience, or dire warnings to share. I realise I run a little risk of overwhelming my system, so I am thinking maybe I could have it then book a paid session of mld (theres a great local lady when I can afford her).

I could ask my le clinic but they freely admitted they know little about primary le so I was telling them how I treat it. So feels like there's little they could bring to the party.

What should I do here take the plunge? As a risk assessing backdrop this lympheodema was left untreated so long I have type 2 diabetes now, so though rapid loss is a risk, the volume also is........

[novembergirl]

There was a TV programme about a Swedish woman who was in a similar situation to you - greatly improved her lymphoedema through MLD but left with fatty deposits that impeded her mobility. She used liposuction to remove the remaining deposits. I don't know how she is now, but by the end of the programme she was able to move around much better. However her liposuction was done by an experienced practitioner who understood her condition. Her story is on YouTube (warning: also features a very extreme case of a woman in Miami who must have been untreated for years, it's very upsetting): youtube.com/watch?v=sx6xo7N...(Not working as expected?). I would be very wary of having any treatment done by a generalist, especially if the type of liposuction is uncharted territory in relation to lymphoedema, but if you can find a practitioner to give a considered view of the treatment and its likely risks/outcome that might be a way forward.

[novembergirl]

Sorry, the link failed so try googling

My Shocking Story: "My Big Foot". Part 3-4 (Primary Lymphedema)

and you'll find it.

[clown]

I don't know where you live but I would go see a lymphedema specialist I am lucky to be under Prof. Mortimer. My lymphedema has become fatty. Under his instructions I am on a very strict diet. He will then do liposuction. I am excited because I am no longer a type 2 diabetic. Lost almost 11 kilos

[naominorthenellis]

Hi Suzie, Clown is absolutely right that you should see a specialist before embarking on liposuction and I would proceed with the greatest caution and advise against special offers on Groupon. Liposuction is a serious surgical procedure and can make the condition worse if undertaken by someone who has no knowledge of lymphoedema. If you would like more of the information i have researched please email me : [e-mail]

[Sue15-08]

Am I reading this right? Lymphedema causes diabeties?

[suzie_danger_girl]

No, it doesn't Sue. Not to my knowledge. My diabetes is a result of it being in my family, more duff genes from my mum, also the source of my lymph problems.

Type 2 diabetes however will come on earlier if you are carrying extra weight, and is exasberated by it. Diabetic control is possible, and becomes more possible if you loose the extra weight. But the weight is lymph. So in spite of my impressive amount of exercise and great diet it won't come off, there it sits, over the muscle until we break it up and push it away.

I personally have a little theory primary lympheodema kind of *can* cause type 2 diabetes as you tend to build up toxic levels of things you eat repeatedly, this way we can accidentally make food allergies if we eat something every single day (they told me for ages this wasn't a lympheodema thing but it clearly is). Either way that's jist my own theory, but its a semantic, what is recorded fact is not carrying the extra weight around my abdomen would help with diabetic control.

For this reason I am *fascinated* by your story clown. Anything more you can tell me about this is more then I have been told I assure you. Do you mean you have good diabetic control, or do you mean you could now eat a big sticky cake for breakfast and have ok blood sugar 2 hours later like a normal person?.......

I don't doubt all your suggestions for a moment I should have advice from a primary lympheodema expert. But there isn't one here who will see me. Please contradict me on this one! I was diagnosed by dr Mortimer 20 years ago, I paid to go to his private clinic two years back and he wrote quite a strong letter to my gp about my lack of care but nothing will change nor has it. I can pay to see dr mortimer whicb I can't afford right now, I can sit and be ill and hope someone treats me in the next 20 years and loose more of my life to being a chubby faced zombie who can't even think or eat because my system is so broken with lymph blockage, or I can devise my own treatment and deliver it with the help of my lovely bloke. I have chosen this option, I have mobility and clarity back, I've self prescribed myself tights down from size 4 to now size 1, I have more normal looking legs then I've ever had, ive lost 3 stone of lymph fluid. This is why I'm making my own decisions without medical assistance, because respectfully to you all, no one here gives a flying one when I couldn't eat or breathe properly, when I couldn't think, when my wrist bone died from restricted circulation, when I got type 2 diabetes, when I get 6 infections a year. They didn't care, they don't care, and the risk to my person from inaction has proven my experimental self treatment to be safer then waiting around and being left to physically shut down.

I have already lost the same weight as clown has, she will be treated, I won't unless I pay. So I'm thinking do I wait and hope I can pay for an expert, and risk my other hand dying while I wait, or do I buy the laser lipo, which at least doesn't carry the infection risk of invasive lipo.

But I have as much rick I will cut my leg tomorrow and it gets infected right?

[LenaB52 in reply to suzie_danger_girl]

Hi Sooz, don't let your GP get away with it, you are entitled to any help that is 'out there'. Go back and insist, if he still refuses ask him why. Then get an appointment at your local MP surgery, and say you need his assistance to get the care you need. Good luck.

[suzie_danger_girl]

And thanks everyone so far for these really full, helpful caring answers. Networks like this have made it possible to self treat and get this far. It has made a massive difference not to be alone any more. So genuine thanks this is really intwresting and helpful xx

[suzie_danger_girl]

lol my boyfriend agrees quite a bit woth you guys. He has a suggestion which is to go to my mld lady and ask her about it. I have to say she is terrific, has been the only consistant help. I might be able to scrape the £60 together to see her, he will help me.

[pushkin]

Hi Suzie,

I live in Eastern Europe in Ukraine where I haven't found any treatment for lymphoedema anywhere. Without going into a ling explanation at the moment, I have lymphoedema principally in my lower right leg ankle and foot. It is very incapacitating and makes me as mad as hell as I am such an active outdoors person. I have had this situation for 20 years and have long since treated it myself . Suzie... exactly what is your self-treating method PLEASE? And how do people answer the problem of finding shoes that are comfortable and FIT? Love Jacckie

[suzie_danger_girl in reply to pushkin]

I really used the usual methods to get the normal lymph fluid off. Its the stubborn lumps at the end which are troubling me now.

I used light weights / high repetions, basically repeatedly using the muscle helps push the fluid off. These guys have good exercise recommendations elsewhere on this site. Whenever I sit I raise my legs, a box under the desk at work, a sofa with leg support. I have compression tights which are haddenham veni and are great, I have had to call had haddenham directly before and they are super helpful. I did pilates which is very gentle and clears my lymph pathways. I eat low gi index foods which is low simple carbs basically. Drink a lot of water, do sld which is simple lymph drainage which they again have great sheets for on here.

I do a few other things which are NOT recommended. I use a vibrating massager directly on the area, or my boyfriend has done hour long sessions of mld. He's good at it but it is dangerous. The problem you have is if you manually push stuff off the limb yourself, it will go to the next place up the chain, and get stuck there. If you have it in your leg and you push it for example you will wake up with a huge swolen groin, and a heck of a problem. So I don't recommend that to anyone. We have done things out of desperation because I've wound up with a tummy so blocked I couldn't eat, or a neck so blocked I couldnt swallow or hear and was getting ear infections. If its on your leg I strongly suggest you use the standard methods as recommend by these guys, and it will gradually reduce. My legs have taken 5 years to reduce this way down 4 tights sizes. If you tried to manually push it you risk it in your tummy or neck with the problems I had, and I can attest to the fact its not fun to deal with on your own.

If you are super active I massively recommend swimming to you, I do synchronised swimming now and its amazing. The gentle pressure of the water helps, and it also supports you which will be useful to you if your swelling isnt even on both sides. The deep breathing of swimming opens your tummy pathway and is the only reason I can now eat! Swimming is your friend.

[clown]

Hi Suzie,

There is no reason why you shouldn't have the same opportunities as me - Fight to see Prof. Mortimer. I drove my doctors mad till I got a referral. It is your right. I wrote to him as well in desperation.

I no longer need to take any diabetic meds - I was on two different ones. I am still on a very strict diet so will not eat any sweet puds. etc but my GP did say eventually I will be able to eat what I want.

[clown]

I forgot to mention that I am off my high blood pressure tablets also. Prof. Mortimer told me that those suffering with lymphedema need to do what they can to reach their ideal weight as that alone will help their lymphedema. I have a way to go yet. I am determined....

[lovesradio]

I am with clown and LenaB52 Suzie, push fight and push again for referral to Dr M. Check via LSN and anywhere else you can think of to get special funding to attend your mld specialist and or Dr M's private clinic. Nobody but nobody should have their GP blocking their path to proper care or at least far better care than you currently get from the so called healthcare profession..

[suzie_danger_girl]

Thanks guys, your support is really appreciated. Unfortunately dr Mortimer's surgery is just so rammed eith him being the only real expert, he saw me when I was diagnosed, but now the clinic just has to refuse all new referrals from out of area.

I have funny enough just got a letter to try the sailsbury clinic, I don't know if they are any good so I will have another go. I wpuld really like sleeves I have never had a set and I have realised how much is on my arms. I'll see how I get on.

[kharimata]

Hey… I have a long le history. I had a MRI scan on top of the limphescintography . The lymphescintography showed that I have primary le (that I knew already ) but the MRI showed where the problems areas are. It is not because there are no signs that your lymph system is working well… and it is not because there are signs that it is totally not working…

So I have been told NEVER to do liposuction on my thigh were there is some annoying fat due to le that won't go away , because that would suck out the remaining vessels and worsen my le. I would have to wear 24/7 stockings…

So I decided to live with this. This was told to me by a specialist. Every case is different, but I have been told after lipo you should wear 24/7 stockings. Just be aware of this.

Good luck !

[naominorthenellis]

if you are considering liposuction please; please don't take up an offer on Groupon. There are surgeons who perform liposuction on lymphoedema patients but you would have to be very sure they understood the condition otherwise they could really mess things up by damaging more of your lymphatics. Speak to your therapists and get a referral to one of the specialists like Professor Mortimer for the best advice.