Barb

[Sbluebam]

Hi Everyone ,

Does anyone have any good information about Lipo ?

If you get Lipo does it get rid of this awful disease ?

Has anyone ever had funding from the NHS ?

Thanks

Barb

[Hidden]

Hello,

Have a look at Lipoedema UK, a great charity that offers help and support, if you haven't already.

I have Lipoedema and secondary Lymphoedema. Liposuction was "prescribed" for me at St George's hospital in London, for my arm but unfortunately after 3 bids my CCG have told St George's not to submit any further applications for me.

The hospital has had very little success getting funding and I know several patients like me who have also been turned down for NHS funding.

Over recent months however there has been a little improvement inasmuch that a very few patients with Lymphoedema only have had funding granted for the procedure at St George's.

I have been hoping for 3 or 4 years now.

Liposuction will reduce the bulk of a swollen limb but compression hose has to be worn 24/7 for the rest of the patients life for patients likeme with the dual diagnosis.

[Sbluebam in reply to Hidden]

Hi ,

Thank you for your reply .

I am so deflated with all this , it’s really so unfair that we have a disease that no amount of diet or exercise will help yet the NHS won’t help to fund it .

No disrespect to anyone but if I was addicted to drugs I would get help .

Why isn’t the NHS recognising this disease ?

I have been told about liposuction but the cost would be over £42,000 were am I suppose to get that from ?

I am so sorry that you are not getting the help that you so rightly deserve , it’s really disgusting .

Have you ever thought about going private for liposuction ?

Take Care

Barb

[Scottie_55 in reply to Sbluebam]

It seems that if you want to have liposuction then you have the fund it yourself. In the UK it appears to cost £10000 for each procedure/area. But if you are prepared to go to Munich four treatments cost £10000. Certainly better value and the results appear to be successful. I need to win the lottery.

[Sbluebam in reply to Scottie_55]

Hi Scottie ,

Yeah I’ve asked about and I haven’t come across anyone who has it funded by the NHS. Which is ridiculous .

The price tag is awfully expensive and like you I def need a lottery win .

Have you had any treatments at all done ?

Do you know the name of the surgeon and clinic in Munich ?

Thanks

Barb

[Scottie_55 in reply to Sbluebam]

The surgeon is called Dr Dominick Von Lukowicz. I am on a chat page on FB called Talk Lipoedema Private Chat. It is global and many of the ladies have had treatment and the results are amazing. They post before and after photos. I have stage 2 Lipoedema which was diagnosed post surgery when I developed Lymphoedema. All that is available is compression, exercise and try and lose weight. My lipo is waist to knees and doesn’t cause me too many problems. I am trying my hardest to stop it progressing from knees to my ankles. I wear compression every day but not the prescribed one as they were too uncomfortable. I buy sports compression shorts and I can get them on and off easily. Ask to join the group you will find it interesting though there are some harrowing photos too. Best of luck.

June

[Sbluebam in reply to Scottie_55]

Hi June ,

Thanks for your reply .

I have sent a few surgeons my pic ( very embarrassing ) and they say I have stage 3 lipodema which effects all of my leg unfortunately .

I’m not on Facebook which is such a pity as would have loved to see the before and after pics .im not really overweight and I exercise by walking every single day .

I would love to get surgery but it’s so expensive .

Have you had any surgery done to your legs ?

This is my email [e-mail]

If you have anymore info that would be great .

Thanks so much

Barb x

[Wombat64 in reply to Sbluebam]

Hi Barb

It would be good if you joined Facebook, even just so you can join the lipedema groups there. There are quite a few really good ones. You can easily set up a profile for yourself, just so you can become a member of the groups.

[Sbluebam in reply to Wombat64]

Yeah I should really

ThNks I will think about it

[Scottie_55 in reply to Sbluebam]

No, like you I would love to have liposuction but just cannot afford it. I was interested when you sent photos to some surgeons. Who did you send them too as I was diagnosed by my Lymphoedema nurse and would welcome a diagnosis from a qualified surgeon.

Regards

June x

[Sbluebam in reply to Scottie_55]

Hi June ,

I saw a Vascular Surgeon at my NHS Hospital who arranged scans and a lymph scan ( sorry I can’t remember the proper name ) and now I am waiting to go back to see her later this mo th for the results but since waiting she arranged a appointment with the lymphodema nurse and she has measured me for tights etc

I go back to both of them in 2 weeks .

The fact that there is help out there I am really thinking of remortgaging ( reluctantly ) but I hate these legs.

What’s your plans are you get lymph drainage massage or anything ?

Barb X

[Hidden in reply to Sbluebam]

Hi,

I have and probably will. I only need one surgery at about £12k. I have to be sure that St George's would then pick up my life long after care.

I plan to use the same team as I would have done if my CCG would pay for it.

I thought of going to Germany too but having chatted to one of the surgeons I am not a suitable candidate.

Good Luck !