Surgery

[lynebank]

Any information regarding debulking surgery in the uk would be appreciated. Thanks Fergie

[Lynora]

Has it been recommended to you?It really is the last resort.

[Sheilamoose]

Do you mean all lymphatic fluid in limb has now turned to fat & needing lyposuction? (My own situation.) There are 3 (that I'm aware of) 'specialist' hospitals in UK: London, Edinburgh & either Oxford/ Bristol - can't remember which. If you live 'within area' your GP can refer but if not you have to be referred by hospital.

Funding is incredibly hard to get - needs an 'Exceptional Funding Application. The London (out of area) hospital I attend is dealing with the funding application, rather than pass back to GP.

It's a very long wait too - 1st appointment was 1 year after referral. Waiting now to see surgeon - 6 more months to wait...

Can't afford private & not in BUPA (not sure if even covered by it), so just playing what UK is best at - queuing!

Good luck

[bigleg]

The best I had was MLD through massage and bandaging. We reduced the leg by 5 1/2 litres at the time and have been able to maintain with heavy compression garments since then. I don't know how many operatives there are as it was not covered by the NHS and that lovely lady is no longer operating - but the compression garments are now covered by the NHS.

[Jennymary]

I doubt if the service you're talking about is in Bristol, I live in Bristol and lymphoedema services are sadly lacking, from what I've seen on this forum there seems to be a good service in Oxford

[Microsurgeon]

HI lynebank. I am a Plastic Surgeon in Oxford working in both NHS and Private practice. I presume that you are talking about liposuction for lymphoedema when you refer to 'debulking sugary'. This liposuction is very different from 'cosmetic' liposuction.

Basically, lymphoedema starts as and excess fluid in the tissues but a variable time the excess fluid stimulates the fat cells to increase leading to both an excess of fluid and fat in the limb. Compression and LVAs can reduce the fluid but CANNOT get rid of the excess fat. The only way to do this currently is liposuction. This is then followed by compression garments in the long term. This is a very effective treatment and has been pioneered by Hakan Brorson in Malmo Sweden.

With regards to who can do it. The NHS is a post code lottery. Few areas offer this service. I hear that St Georges in London do a small number of cases on the NHS as does Alex Munnoch in Ninewells, Dundee. I am not sure of other centres offering it on the NHS. We are not allowed to in Oxford in the NHS by my Trust. Other NHS trusts may provide it but I am unsure of local practices.

You may also need an IFR from your CCG to support funding via the NHS. These can be very difficult to get as proving you are 'clinically exceptional' is difficult in lymphoedema. Further reading at

england.nhs.uk/wp-content/u...

Other wise there are several people who do it privately in the UK with Oxford (OLP) been one of those. However before you have this surgery I suggest you see someone who

- has experience of this technique

- has visited and trained with Brorson

- has good quality post op compression plans, practitioners and support in the longer term.

- and very carefully decide if this is the correct treatment for you.

Avoid 'cosmetic' plastic surgeons who may not achieve what you want.

This is not an advert and you must carefully look into your options before deciding what is best for you and who is best to perform it.

Lymphoedema, liposuction, NHS provision of services are all massive and complex subjects that cannot be completely covered here.

Good luck and I hope this may help.

The LSN is a really useful resource for patients. We are in the process of writing more fact sheets for the LSN on this topic.

AR

[Mitzie]

Hi,

I have primary lymphedema in both legs..from birth.

Approx 40 years ago I had 2 debulking operations at St Thomas's hospital in London. The ops were quite gruelling and I ended up with massive scars from ankle to thighs. Initially the results were good..I was able to wear knee length boots..which in the seventies was brilliant.

However the results weren't permanent and gradually the legs increased in size and even though I constantly wear compression I still get all the usual side effects of Lymphedema!

I don't know if the ops are still carried out..at the time I had mine the was not a lot of options available.

Best wishes

[Hidden]

I am under the care of St George's who first applied for funding for my secondary Lymphoedema which is complicated by Lipoedema, 5 or 6 years ago.

The 5th bid is being put together now after an MRI scan confirmed that my "lymph" is nearly all " Lipo".

I heard Miss Ann Dancey speak at a conference. She was having success with some insurance companies agreeing to fund liposuction procedures. At the time she was working at Queen Elizabeth Hospital in Birmingham but I believe she now works in the private sector exclusively.

Wendy

[Dee0]

Hi, I have just had surgery in August and this was done at Birmingham by Miss Dancey. It is still not quite 3 months but there has been a huge improvement to my leg. My ankle and foot are still swollen and numb in places and I am hoping this will also go down but time will tell. 3 years ago I tried for this procedure on NHS but my local CCG would not pay for it so I eventually went private. I think it is so unfair that it can't be done on the NHS as it makes a big difference to people's lives. Good luck for the future and hopefully you get it done on the NHS.

[Sheilamoose in reply to Dee0]

You can still get funding for liposuction on NHS but often depends on individual circumstances. If it’s secondary & causing other problems you stand more chance of getting funding & the more hospital consultants from other areas who will speak out & support the application the better.

Most NHS specialist lymphoedema hospitals prefer to do the funding application instead of passing back to GP.

As far as I am aware, there are only 3 NHS lymphoedema qualified surgeons in UK. Rest are all private. Hope this info helped

[Hidden in reply to Sheilamoose]

My 4th bid was returned to St George's with a very curt reply asking St George's not to submit any more bids for my liposuction procedure.

Prof Mortimer is now putting the 5 th one together on my behalf.

He hasn't put one together before soI feel honoured !

I think it's a reflection of how frustrating it is to find a care pathway for a patient only to have it blocked for the last 6 years.

The therapists have submitted all my others and I'm grateful to them as it's an enormous piece of work and takes them away from treating patients directly.

[Sheilamoose in reply to Hidden]

I’m under Prof Mortimer at St George’s too. (Long journey to London!)

I’ve got acute shoulder problem as well as enormous arm with very little fluid, it’s nearly entirely turned to fat.

My Orthopaedic Consultant has written supporting liposuction at St George’s based on its the extra weight of my arm which is causing my shoulder problems. He operated last year but says there is nothing more surgically he can do.

My only hope & way of alleviating the constant pain atm is a hefty daily dose of morphine via patches & oral morphine as well when pain gets unbearable.

Just praying application will go through as I cannot carry on like this any longer.

[Hidden]

Hi,

Sorry to be dim, is the team at St George’s putting in the bid?

Like you I have deteriorating orthopaedic problems as I have broken discs in both my lumbar and cervical spine .

Prof is concerned the extra weight is making the situation critical for my poor spine.

I expect you’ve had an MRI like me to demonstrate that the swelling in your arm is not lymph but mostly fat ?

Do you have Lipoedema too ?

( Sorry if I’ve missed that important point.)

Wendy

[Sheilamoose]

Yes team at St George's is putting in application for Exceptional Individual Funding. Prof Mortimer said it was too complicated for GP to handle lols.

I've got secondary lymphoedema. Arm has been getting progressively worse since breast cancer in 1992. Got new therapist at local hospital about 4 years ago & she has worked magic! Arm is really bulky but it's fluid which has naturally turned to fat.

I've had torn rotator cuff repaired & loads of bone chipped off shoulder (got osteoarthritis in it) but got problem at top of shoulder with tendons. Had (yet another) ultrasound guided painkilling injection in shoulder last week. Doc showed me there's like a big bubble round the tendons at top of shoulder where it hurts. Injection already wearing off - just 10 days, sob.

I've already had spinal decompression, but MRI now shows 2 more slipped discs at base of spine in lumbar region. Have had foot drop & numb left leg since spinal decompression in 2004 so would rather they left my back alone.

Got appt with Dr Gordon & surgeon but not till April.

Son getting married in May. Think will probably have to do same as when daughter got married 5 years ago: get suit as separates - size 12 skirt, size 24 jacket (to get right arm in). Will then carefully unpick jacket & lining then carefully tailor jacket down to a 14 but leave both sleeves 24 so jacket is balanced & doesn't look 'off. Suppose I'm lucky to be 'older generation' and learned needlecraft & tailoring at school.

As far as I know I don't have lipodema too (just about everything else though), Went to Specsavers last week & they have written to GP too as found massive bleed behind right eye. They want blood tests done as they say it's a sign of diabetes, groan...

Lovely to hear from you Wendy

Ann