Tweets from ESL (6) – Can I get rid of my garments? Will infections be reduced?

[LVASurgeon]

@Oxford OLP

Sep 26

Can get 75% patients with early ‪#Lymphedema‬‬ free from compression and other treatments using ‪#Microsurgery‬‬

Seems that LVA is the way forward for ‪#prevention‬‬ and ‪#treatment‬‬ of ‪#Lymphedema‬‬ ‪#breastcancer‬‬

Possibly…….

The key to effective microsurgical treatment for lymphoedema is early intervention. The worldwide consensus from the ESL meeting in Genoa was that early microsurgery is the only really effective treatment for preventing and treating lymphoedema. This data is from Takaumi Yamamoto in Japan. Takumi is a very talented young surgeon, who is committed to analyzing the results of microsurgery for lymphoedema in detail. The database he maintains (I have seen it first hand in Tokyo) is awesome. His research papers are well thought out, and have lead the way.

He looked at surgery for early stage disease, and found that 75% of patients can dispense with garments and other non-surgical treatments for their lymphoedema. In later stage patients (with over 10-15% increased volume), patients usually can’t stop other treatment, but they might be able to use lighter compression, or go for short periods without compression (for example, whilst on holiday).

One thing I didn’t tweet about (I was listening as well as tweeting, so please forgive me!), is the reduction in infections after surgery. Makoto Mihara, also from Japan, looked at patients for 1 year before microsurgery, and 1 year after microsurgery. He found that their rate of infections decreased by 90%.

Again, this is a remarkable result. 90% less infections on average. This study is now published in the British Journal of Surgery - see ncbi.nlm.nih.gov/pubmed/251....

The reduction of infections was also seen in more severe disease, so again, patients with severe disease can benefit from microsurgery for their lymphoedema, but might well not become free of their compression garments.

If you would like to follow me on Twitter, please search for @OxfordOLP.

There is also a lot of information available on our website olp.surgery

[Health1919]

I have been looking at the possibility of LVA. Unfortunately the cost of overseas treatment is prohibitive. Have you heard of any LVA surgery being performed in Australia with success?

[LVASurgeon in reply to Health1919]

Dear Health1919,

A surgeon in Melbourne does perform this surgery, but I know nothing of fees, experience or results.

northernplasticsurgery.com

Dr. Damien Grinsall

I hope this helps. Good luck!

[AussieElaine in reply to Health1919]

I am also looking at surgery in Australia, I went to see my BS and he is looking into it for me and I have to see him again in February. I have heard of a Dr at Sir Charles Gairdener in Perth who is interested in this surgery. I will be emailing my breast cancer nurse to get his name and try and follow up from there. There is also the Macquarie hospital in Sydney, phone #[phone] ask for Robyn, she is the co-ordinator of the Lymphoedema clinic and they do lymph node transfer.

[Health1919 in reply to AussieElaine]

Thank you. We must be going along the same path. I don't think I want to go down the lymph node transfer because all my lymph nodes were removed from my 2 upper legs and right armpit as well as having radiation. So, I don't have many areas to go to. As for the Dr at Sir Charles Gairdner Hospiltal, I am seeing Dr Reuven Gurfinkel on Wednesday. I think he also operates at Charlie's. I am not sure what he does but hopefully it is micro-surgery LVA. I got his name from my breast cancer nurse. I will let you know what happens on Wednesday.

[AussieElaine in reply to Health1919]

that's the name, just couldn't remember it are you in Perth? If so is your breast cancer nurse Moira? Good luck on Wednesday, please let me know how you go. I for one am not going to rest until I get the medical doctors and surgeons to take notice of this surgery and do something, like join the rest of the developed world and be in the 21st century!!

[Health1919 in reply to AussieElaine]

Yes it was Moira. I agree that Perth and Australia is so far behind. I did make contact with a Dr Mihara in Japan who has trained other surgeons e.g Italy. and he would be happy to come and train doctors in Australia. This is what he emailed me : "Please ask your doctors to invite me to your

country. If they cordinate invition, I can operate on you in Austraria.

You can use your insurance." I just hope our window of opportunity doesn't pass because the doctors here are too conservative.

[AussieElaine in reply to Health1919]

wow that's great, would love to maybe meet you and if we join forces maybe we can get them to take notice. When you think that they can operate on tiny little premature babies, then they must have the equipment and expertise to perform this surgery don't you think? anyway my mobile is 0433406029 if you want to give me a call. I have faith in the surgeons and dr's here it's just that as you say they are so conservative. How did you go about getting the appointment, through a referral from your GP?

[Health1919 in reply to AussieElaine]

Once I had Dr Gurfinkel's name I just googled it, rang his office and asked the receptionist if Dr G does LVA micro surgery. The receptionist got back to me the next day saying that yes he does the operation. I just made an appointment without first seeing my GP. I have since got a referral so that I can get a bit of medicare rebate. I will call you after Wednesday with my findings. It might be good if a few of us got together so that the surgeon sees there is a need. I think us women have kept quiet for too long.

[AussieElaine in reply to Health1919]

Good luck and looking forward to hearing from you

[Pjtrant]

How successful is LVA treatment for leg lymphedema?

[LVASurgeon in reply to Pjtrant]

Dear Pjtrant,

LVA has been used successfully for leg lymphoedema, but as always it is not a treatmetn for everyone, and it is important that you see an experienced surgeon and discuss your individual needs and expectations with them.

Good luck!

[Health1919 in reply to LVASurgeon]

As the cost of surgery is out of the reach of most, what have you seen is the best way to keep swelling under control? I feel that a lot of recommendations are like 'urban myths.'

[LVASurgeon in reply to Health1919]

Dear Health 1919,

I agree you need to be careful of urban myths. There is much advice out there that has no evidence of any benefit. Ask anyone who is recommending a treatment to you to give you some scientific research papers detailing the benefits. Make sure these papers are in reputable journals (e.g. can be found on pubmed.com), and make sure they are looking at large groups of patients, not just anecdotes from individual patients.

In general, bandaging and compression garments do help, but they are not treating the underlying cause. Exercising and keeping weight down is beneficial for general health, and will reduce the amount of fat in a limb, and therefore its overall size. Skin care and avoiding infections (that cause inflammation and worsen lymphatic function) is also sensible. MLD will move some fluid out, but it will re-accumulate quickly so needs repeating very regularly. Intermittent pneumatic compression (IPC) is essentially MLD done by a machine, so can be done more regularly, but the same applies.

Hope this is helpful.

[AussieElaine]

hello, I am in Australia but am a British National. I am returning to the UK in June, what would be the chance off me getting an appointment to see you and how would I go about it? What is the length of time for recovery from this surgery? I have secondary lymphoedema in my right arm following ALND for breast cancer

[Health1919 in reply to AussieElaine]

Dear Aussie Elaine,

I contacted the Oxford Lympoedema Practice directly on the following email.

[e-mail]

They were very helpful and seem to have dealt with over seas' patients. They gave me the cost, length of recovery as well as suggestions on making sure plane schedules are syncronised. They even have a Skype service for follow up when you are back in your country. If you are able to use the NHS then that would save you a lot of money.

[AussieElaine in reply to Health1919]

thanks heaps for that, will email them and looking forward to your call later in the week

[Health1919 in reply to AussieElaine]

I have just received a phone call from a Dr Philil Rome's office in Sydney. He has been doing a few LVAs every year for the past 7 years. He usually does about 4-5 joins per limb. He has been to Spain to learn the procedure.It was stressed that not everyone is suitable and the result does not do away with what we are doing now but there usually is a reduction in circumference. Also, I was told that noone was worse off. The cost is about $6000 per limb with a refund of about $2000 from medicare/private health. He operates at the Prince Alfred and Concorde hospitals. Things are moving.

[AussieElaine in reply to Health1919]

sorry for the delay in response, was at work all day. I finish for good on Friday, just can't handle it all. You have been really proactive, I understand not everyone is suitable but we have to try don't we. Good luck for tomorrow and looking forward to your call.

[Health1919 in reply to AussieElaine]

Disappointing meeting with plastic surgeon today. He does not do LVA (he actually had not heard of it) and he only does lymph node transfers for the arms not legs. I don't think I'm prepared for lymph node transfer.