Treatment for Lipodemia

[catoclayton]

Hi

Has anyone heard of or had any profisional liposuction treatment for Lipodemia or Lymphodemia on the NHS.

I am trying to help my daughter who has suffered for 30 years with Lipodmeia and is trying to get her health authority to fund the surgical treatment by Alex Munnoch in Dundee Scotland. He has had some good results but will only do the procedure on the NHS. Her local health authority are refusing at themoment saying it is cosmetic. But we all know the truth of that.

Any help would be much appreciated and could help others of course along the way.

[aepyornis]

Hello, I was hoping that someone with better knowledge of NHS funding would answer but here is some information that might hopefully help.

Re surgery: I have had lipoedema for 15 years now and after a series of random misdiagnosis, there comes my lucky strike: at my local University Hospital is a surgeon who was trained in Genoa to practice the microsurgery for lymphoedema. Though I have lipoedema and that my angiologist did not see an associated lymphoedema, upon examining me, he came to the conclusion that the surgery needs to be in two steps: lymphoedema microsurgery and then only liposuction for the remaining fatty tissues. According to him, there is a lymphoedema associated in my case that needs to be addressed, which surprised as I hardly had any symptoms. He said that the liposuction will not be as effective as it could without the micro surgery beforehand. All of this to say that in your daughter's case, it might be worth checking this as well. Maybe the funding might even be easier if this is the case (not that I wish this to her).

Re NHS: the LSN community here on HealthUnlocked is larger and more active than this one and there have been a lot of exchanges about NHS funding for surgery/treatment as people are in a very similar situation and have a lot of trouble getting approved for NHS treatment: I suggest you see the related posts, or start a new one, you will get more answers. One thing that comes back often is that you need to document everything: I suggest you start by gathering all medical history and document things precisely, including how often she cannot go to work, or has trouble sleeping, etc. etc. to demonstrate that this is a serious impairment and not anything vanity-related. Precise stats seem to be helpful with the NHS :). I heard that there is also discussion about changing the name of the procedure for lipoedema so that it does not sound anything like aesthetic surgery (at my hospital, it is taken care of by the plastic and reconstructive surgery department and fully reimbursed by our mandatory health insurances).

Last but not least: check clinics abroad, in Germany or Netherlands, if things are too slow/complicated/expensive in the UK. There are specialized clinics there that do the surgery, and it might come cheaper to go there than to a private clinic in the UK or wait 5 more years for approval…

I hope this helps, do not hesitate to PM me if you want more info on my side.

[Blunderwoman]

Lipoedema, and Lymphoedema.

Unfortunately it's a healthcare lottery. As GP's are set to be paid NOT to refer people for treatments, it'll get worse to get anything!

Good luck!

[pollyslymph]

Hi.....i have just come across this site and am wondering if yourself or anyone had any luck regarding finding sites in UK that do microsurgery for lymphedema. i saw on one site that the NHS used to pay but that was years ago and was in Oxford and at the Royal marsden. i have just recently got lyphedema in my right leg after 15 years dealing with breast cancer. i never had chemo or radiation and chose alternative methods but my right side started with complications to my lymph and I want to try and deal with it before it worsens. I am in Spain a lot so any new information about docs in Europe would be appreciated. TIA