My Daughter has had Primary lymphedema for over 20years

[Nannymcpheee]

Has anyone had liposuction, if you have lymphedema? A clinic in Oxford recommended that or bypass surgery.

[Lynora]

I am a retired therapist and worked with several clients who had very successful liposuction for primary lymphoedema. Certainly life enhancing! However, it is not a ‘cure’ so compression still had to be used.

[Nannymcpheee in reply to Lynora]

Thank you Lynora for your reply, is there a noticeable difference? My Daughter can no longer wear trousers or shoes!

[Lynora in reply to Nannymcpheee]

Yes - significant difference.

[CCT67]

Those 2 surgeries are profoundly different. Ensure your daughter understands the difference between them.

SAPL reduces limb volume. It’s very painful post op/recovery but most patients are extremely pleased with reduction of limb size. 24/7 compression is required indefinitely in most instances.

LVA/by pass results vary from profound improvement/life changing to making no difference whatsoever. This includes patients who were theoretically best candidates for successful outcome. All of the LVA patients I’m thinking of (a combination of successes and failures) were done at OLP. They are expert surgeons in lymphatic surgery, but can’t predict the future, don’t have crystal ball. Cautious optimism is the best approach!

[Nannymcpheee in reply to CCT67]

Thank you CCT67THE OLP did go into specific details and have sent me a breakdown of the 2 surgical procedures.

[Mushy1]

As already mentioned Liposuction and LVA are two very different procedures and neither can guarantee a successful outcome.

Normally, LVA can only be performed in early stage lymphoedema and even then success can vary from patient to patient. It’s worth noting the OLP criteria for success are based on 3 factors, those being, a reduction in limb size, a reduction in cellulitis episodes and improvement to the patient’s quality of life (QOL).

I have personally invested in LVA surgery as a secondary early stage lymphoedema patient. I believe the investment has been worth it, if only to help manage my mental health. I still wear compression garments and religiously follow a daily skincare and massage routine to slow the progression of the condition.

The difference between the two procedures is that liposuction can show immediate results once the surgical swelling has reduced, but without 24/7 compression thereafter the benefits can quickly be undone. As has also been stated, I understand it to be quite painful post surgery whereas LVA is far less invasive and relatively painless.

I know of a very few instances when liposuction has been performed by the NHS but exactly how you can get this approved is beyond my knowledge.

[Nannymcpheee in reply to Mushy1]

I believe my Daughter has spoken to her GP but unfortunately the nhs won't fund it, hence why I was looking at alternative solutions. Thank you for your input.

[hshank]

My son has had primary lymphodema in his leg for about 10 years now. His leg was in bad shape till we found a surgeon (in Los Angeles) who did the bypass surgery. He placed 3 bypasses in different locations of the leg and it has made a remarkable difference to his leg. The swelling decreased considerably. The lyposuction was done during the bypass surgery. But the surgery does not benefit everyone. You have to be evaluated to make sure you have working lymphatics .

[Nannymcpheee in reply to hshank]

That's brilliant, I'm so glad your Son had success with his treatment. We wouldn't have the funds to travel to LA and the bypass surgery is more expensive.

[Petrolhead276]

nannymcpheee

Who is treating your daughter?

Local GP &/or local hospital?

My son has primary lymphoedema of both legs and his trunk, after naff all being done at our local hospital I confronted the consultant about his registrars poor attitude (my son is an electric wheelchair user) and requested that the local consultant refer my son to the lymphoedema service at St George’s Hospital Tooting south london.

The treatment there is so much better, which also included 4 weeks intensive treatment of very tight bandaging including a hotel for my son and myself, all NHS funded.

Also use the LSN, lymphoedema support network.

That’s how I found out about St George’s; I called the consultant there and spoke to his PA which was how I knew out of area referrals were to come from local

Hospital consultant.

[Nannymcpheee in reply to Petrolhead276]

My daughter goes to a clinic. The usual massage and changing her supports. That's very interesting, I think it depends who can fund it, her gp said the NHS wouldn't. Also my daughters mental health isn't that great, because whenever I suggest anything like liposuction, she just shuts me out.

[Petrolhead276 in reply to Nannymcpheee]

In summer it is difficult for our son who is 41 now.

The thick compression garments are from toe to thigh so he gets very hot when the rest of us can walk about in shorts or whatever.

If your daughter is not under a lymphoedema specialist consultant at a hospital then ask the GP to refer you to your local service for a 2nd opinion.

From there you can ask for a referral to a regional specialist centre.

Give the LSN a call to find out your regional centre for this awful condition.

LSN Contact details for everyone

Tel: [phone]

web: lymphoedema.org/

email: [e-mail]

But please check online that email hasn’t changed.

[DeadfootMo]

I watched an embarrasing bodies program a few weeks ago and a young girl on the program went to see one of the doctors. She described how embarrassed she felt about having big legs and painful legs at that. She went on to describe the difficulties of getting trousers to fit etc as she was bigger on the bottom half of her body than the top. Had it not been for the fact she felt pain I would of said her needs were cosmetic.

So she was sent to a specialist who described what liposuction he could do , where he could do it and when he could do it. So she went and had it done. Several weeks after the liposuction she went back to the doctor who originally saw her big legs and the transformation was amazing. However, I do wonder if this offering was made on the NHS as mention was made in the program, indicated that in most circumstances liposcution was regarded as a self funded cosmetic treatment. It also mentioned that liposuction was not normally available to those suffering with Lymphoedema as the general treatment was of compression and most specialists in the field recommend compression.

I sometimes think age might be a deciding factor too. If you are a young person who is in the prime of life holding down a job, and finds that having painful lympoedema to be a problem would be offered lipsocution, instead of compression, but an older person in their late 40's early 50's or 60's, might only be offered compression. The young person in the program was in her mid 20's, complained a lot about pain, and her embarrassment when shopping, but also said that her boyfriend was very worried that she may have circualtion issues, so would maybe fair better with liposuction than compression.

So I do have a few issues with the case above and can't help but wonder if the TV program paid for it or the NHS ,and if it was the NHS, what is the criteria you need to fill to get offered liposuction? Is a question lymphoedema sufferers should ask themselves.

[Mushy1 in reply to DeadfootMo]

I would be interested to see this programme as fear it might give a false account of reality. I hope they also highlighted that although liposuction will provide dramatic results post surgery the condition will return if 24/7 compression is not applied.

I personally find the argument the NHS use to classify liposuction as cosmetic is invalid and contradicts other procedures they do fund such as sex change or breast reduction. The NHS argument is these procedures are justified due to the impact on the patient’s mental health which I would suggest is the same for someone living with Lipoedema no matter what age.

[DeadfootMo in reply to Mushy1]

Liposuction is definitely considered to be a cosmetic treatment, and I am certain 99% of GP's would tell you that. However, if Liposcution is combined with a change in lifestyle and diet for a young person it can be a successful treatment. However, if the individaul can not make lifestyle and diet changes to keep weight off, the treatment is then not guaranteed to resolve the lymphoedema which has resulted from the weight gain. It's like type 1 diabetes, diabetes is reversible but only if lifestyle changes and a healthy diet is followed to keep wieght off.

NHS treatments can also be a postcode lottery. Some people will get the treatment courtesy of where they live and work others not, which is where the system feels very unfair.

However, in relation to the program I have mentioned, "Embarrassing Bodies " it could be that the TV Company making the program covered the costs, especially since they have covered some areas, where I am also certain people could not afford to pay for the treatments, such as major dental work.

I have a serious skin problem and many of the treatments my skin needs are just not available on the NHS anymore, as so many medications have been taken off the prescription list, I now buy them over the counter. My skin problem is aggraveated by a vienous problem and my lymphoedeama and recently, I underwent a good two terms of repetitive celucitis. So, I know what it feels like to be told that some treatments are cosmetic. It makes me mad, mad as a hatter.

[Nannymcpheee in reply to DeadfootMo]

Initially when she first went to her GP he said nhs won't fund it as its considered cosmetic, since then she's had several bouts of cellulitis and her last one she developed sepsis. I would have thought this is more a medical reason why she she be treated.

[Petrolhead276 in reply to Nannymcpheee]

If she is getting cellulitis as well on a regular basis she needs to be on permanent antibiotics.

My son had same and was treated by GP with 1 week at a time antibiotics, until he went to St George’s Tooting where they immediately put him on 1mg antibiotics, which he is still on 12-14 years later.

No repeat of cellulitis since going on these antibiotics.

[Nannymcpheee in reply to Petrolhead276]

Yes she is on antibiotics and has a permanent supply, the consultant put her on different ones as the amoxicillin from her GP did nothing. So far she hasn't had a flare up 🙏

[Perido in reply to Nannymcpheee]

It's worth being aware of the BLS/LSN guidelines for management of cellulitis in lymphoedema: thebls.com/documents-librar...

[DeadfootMo in reply to Nannymcpheee]

Hello Nannymcphee,

OMG your daughter needs to get on top of the celucitis and only when it is completely gone, should she be considered for any form of invasive treatment.

The first and worst time for me with celucitis was in 2014 when i was crippled by it. I had of course been stupid, I hadn't taken time out of work and continued to teach and invigilate on exams. But I came to a point, when I just couldn't cope with the pain anymore or the changing colour of my left foot and leg. I went to my GP and my GP sent me straight to hospital to be assessed. I was assessed then in the tropical diseases department. Where they thought my celucitis had been caused by a horsefly bite. (I must also say that at this time, I did not have Lymphoedema this arrived bit by bit and in the autumn of 2018 I was tested and told I had lymphoedema. Bit by bit. Summer holidays were a curse as the first day of travel and the last day of travel, meant I had swollen feet from around 2016. )

The celucitis was treated intravenously with antibiotics everyday for a a good week in the hopsital as an outpatient and for five more days at home with visiting nursing staff first thing in the morning. I then had a fortnight of two types of oral antibiotics. Then a month of another type of antibiotic. The celucitis eased off beautifully but the colour of my skin took a further 6- 8 months to go back to normal. I also remember at the time being informed that I could not have any invasive treatment to drain off the fluid from my foot and leg at this time, as this could lead to spreading the infection from the dermis and may even become sepsis.

It was 2019 when torturous compression was prescribed in the middle of the summer. I couldn't bear it. My foot and leg went all tingly and partially numb and the compression itself created extra ridges and sores, not just at the top of the sock either but on my feet and legs too. I also found that my eczema worsened, as I couldn't treat it properly for reducing the effect of the compression. So, teating the eczema became more important and I stopped wearing compression. Now I have seasonal lymphoedema, it is still at its worst in the summer. But lifestyle and diet changes resulting in wieghtloss, and exercise with my rebounder and step exerciser, have enabled me to suffer less in the cooler seasons.

My teaching job and the heat though has me beat in the summer and at the beginning of the September term every year. As then my feet look like tree stumps by 3 pm every day. And there is just no way i can get my feet up at work. I have to wait till I get home around 5:30.

What I find strange about having lymphoedeama is waking up with very thin ankles, which after an hour or two of being on my feet, just fill up. Crazy.

[Nannymcpheee in reply to DeadfootMo]

I know exactly what you are going through, as I mentioned in my first post, my Daughter has had this awful illness for 20 years, she to had a good job, but had to give it up because she was on her feet for long periods of time. The cellulitis didn't help either. She can no longer wear short skirts, trousers, so I can only imagine what this has done to her mental health. I just wish I could wave a magic wand.

[Snobie in reply to Nannymcpheee]

Lymphedema needs to be recognized disability, because it absolutely is. I had to give up my career 25 years ago, and I still cannot work more than a few days a week because I simply get exhausted I live with exhaustion.

[Nannymcpheee in reply to Snobie]

It most certainly does, initially when my Daughter first went to her gp, he didn't know what it was, she was in and out of hospital for some time, then I started reading about sudden swelling of the limbs and soon realised she had lymphedema. She packed up work and fought for PIP and also the sheer exhaustion of fighting the system. I sympathise with you, as my daughter does get tired a lot and has good and bad days.

[DeadfootMo]

Hello Nannymcphee,

Oh I wish I could wave a magic wand too, as I totally understand where you are coming from. I don't wear skirts and dresses much these days, unless they are long, very long. But most of the time, I wear very stretchy elasticated waist trousers by Sloggi or Sloogi from the market and these are very comfortable and can be worn with any t-shirt or blouse and a nice cardigan or jacket. I avoid leggings as they grip or cling and are not very attractive. But I am reluctant to clear my wardrobe out of things I don't wear on the offchance that just one day my lymphoedema will be cured or will ease off completely. The worst thing to get is properly fitting comfortable shoes.

I know I am living in hope, as my Lymphoedema has also affected my social life and my hobbies. I used to love singing and was a member of two classical choirs, I regularly sang solo in front of big choirs and orchestras and in my youth felt my career was definitely going to be in the operatic arena. And so it was for a while. But in 1995 (asthma) and in 2008, (Legionella Pnuemonia after a London Singing venture) I almost met my maker and that caused me to rethink my career. So I started to plan for a very different career, a career in teaching. So, I started with the onslaught of training etc, University and College, but this did not stop me singing, as I managed to keep the professional side of this going until the Jan of 2012. Socially my social life began to alter from 2014, when I lost interest in dining out or going to the pub with friends. I was of course having 60 hour weeks and told myself that I was just too tired and had no energy left, after planning lessons, marking paperwork. Even my weekends were affected by the fact that I always had a pile of work to do at home.

Holidays were only half a holiday as the rest was planning for the next term.

I reached a stage where even holidays became a nightmare and this was at the point my feet were starting to really trouble me. They were hot and swollen all the time and I didn't know the cause. I blamed travelling originally, (around 2016-2018) as this is when I really noticed I had a big problem and would be so uncomfortable and in pain on the first and last days of a holiday, my logic put it down to all the hours of travelling. But then the problem continued, tingly numb feet and legs, swollen ankles feet and lower legs. At first they appeared to go down, if I put them up for awhile, but then they didn't go down quick enough and they still ached. They would be even worse if my eczema was having a breakout, as the heat and the itching used to cause a neurological sensation in the legs and feet.

I went to my GP for two years and asked why this was happening.? (2016-2018) He told me outright I was overweight, lose 4 - 5 stone and this problem will go away. Start eating a mediterranean diet. Don't know what that is? Look up Jamie Oliver and his 15 minute healthy recipes. Start exercising for 30 minutes a day and get your heart rate up. Can't do it on your your own, join Weight Watchers. This was the line of advice given to me on many ocassions, so many, I thought he must be a share holder in Jamie Oliver, the local gym and Weight Watchers.

You mentioned that you are worried about your daughters mental health. I can also understand this too. So with my average week being 60 hours and this wonderful advice from my GP, I stressed even more, I confess, I did not prepare my meals properly for work or home, I just ate anything and everything. Sometimes on the move. I am joking here, but "I blame Greggs." I did a lot of comfort eating and even today, I still have this horrendous sweet tooth and have to fight off my craving s for chocolate. My life was not in balance and by the time, I was properly assessed and tested, I knew that I had something seriously wrong with me.

So I am grateful to the doctor who did not recommend the three things above to me and sent me to St Oswalds for my assessment. As that assessment at least clarified for me what was happening to my body, and what I was suffering from. It was that assessment, and the subsequent torturous compression that has resulted in a complete change of lifestyle for me and given me some improvements in my condition, but it has not cured me.

I did lose some weight. 3 Stone.

I now buy healthy snacks and I rarely go to Greggs and I do not buy loads of biscuits and chocolate anymore in my weekly shop. I have also cut back on cakes to those that arrive on the day of a birthday at work, so this is about 6 slices of cake a year.

I also do some exercise everyday, as I believe that I have had to. I use a step exerciser and a rebounder. Indoors when it is wet and outdoors when it is dry outside. I also enjoy walking a bit.

The most relaxing thing of all though, is when I shower, and apply hydromol to my skin, as I slowly massage it in, in an upwards movement and then put my feet up.

I have also started going out a bit too and also hope that one day soon, I will feel brave enough to join a choir.

I sincerely hope your daughter manages to fight off this celucitis and then she will be in a position to maybe have some alternative treatments and if needs must, a change in lifestyle could also be on the cards.

All the best and good health.

Maureen

.

[Nannymcpheee in reply to DeadfootMo]

Wow Maureen you have certainly been through the mill, I do hope you get to singing in choir again. My daughter is only a size 10 and eats quite healthy and bakes a lot. Her mental health improved when she had her son 9 years ago, but before that she shut everyone out for nearly 2 year's, I would imagine she was trying to come to terms with this different lifestyle. She can't wear anything else now apart from maxi dresses, nor can she wear shoes, she can squeeze into a flip flop, but that's if and when she goes outside.. I hope one day they will cure this illness. You take care Maureen. It was nice talking to you. Best regards Jackie

[Snobie]

yes I did. Three years ago. It was a hell of a surgery and I had something go wrong where I had a giant seroma on my leg and I have some scar tissue now that in certain ways is worse than what it was before surgery. However, my calf is much smaller than it used to be and so is my knee. I do have to say though, I’m not so sure about the surgery. It’s exciting to see your leg smaller but I am much more fatigued, since the surgery like dramatically more. I somehow became like anemic or some thing from the blood loss. Even though my levels are low they are low normal, but I feel very anemic still. The recovery took months and was very hard for me.

[DeadfootMo in reply to Snobie]

Bless you Snobie. I hope you feel much better now.

[Ola22]

Hi,

I have just been for a consultation and seriously considering LVA at Oxford. I have had primary lymphedema for 2 years now and whilst Lipo may be an option in years to come it does feel like other surgical options such as LVA may have an impact and possibly negate the need for Lipo in the future. We are all different and I going to explore this.