Liposuction

Anonymous

Im sure I've heard of this before but just haven't paid attention to it. Just caught this on our news page and going by what they say it looks hopeful. Anyone know anything about it?

https://www.tvnz.co.nz/one-news/new-zealand/breast-cancer-battler-delighted-surgery-combat-common-side-effect-in-nz-first

"Life-changing surgery on an Auckland woman, who fell victim to a common side effect from breast cancer, has been hailed a success and it could help thousands.

Jeannie Wood became New Zealand's first woman to have long-term relief surgery for a common side effect of breast cancer surgery which causes pain and suffering to thousands.

It's estimated around 25 per cent of patients develop a debilitating condition called lymphoedema following surgery to remove and treat breast cancer."

Further on it goes on to say...

"In a quest to help patients, the NZ Breast Cancer Foundation researched a surgical liposuction technique, pioneered by Swedish surgeon Dr Hakan Brorson.

The Foundation helped cover the cost for Dr Brorson to travel to Macquarie Hospital in Sydney to train Australian and two New Zealand surgeons in the technique "

Also...

"Both surgeons say the procedure offers the chance for a permanent fix for lymphoedema."

JenGrace

Hi.  I am the fortunate woman who had this surgery.  Surgery was 23 March and I am feeling great.  Was successful and my affected arm is now the same size as my other arm.  At its worst my affected arm was 77% larger.  I would be happy to provide any information on this amazing surgery.

Anonymous

Hi Jen, welcome to the boards. I read your story on the TVNZ news site earlier on this evening. What a great result for you! Wow.. Would love to hear how things go as time goes on. I think they said something about you need special bandaging..... do you know what that is?

All the best! and I hope things keep getting better and better.

glennie19

Hi Jen, glad to hear that the surgery worked so well for you!

Binney4

JenGrace, welcome, and congratulations on your great results! Please do tell us more!

Dr. Brorson has pioneered this kind of liposuction over many years, and his results are encouraging. There are a number of doctors in the U.S. now who are doing lipo for LE, but it is a very specialized technique, not to be confused with the more usual form of liposuction. Unfortunately, some of the doctors here are not fully trained, and their results can be, uh, less than helpful. The lymphatic vessels lie close to the skin and are easily damaged or even eliminated by liposuction that is not masterfully done. It is generally reserved for those with excessive swelling that cannot be successfully reduced by standard therapy, so is an especially valuable resource for those with primary (genetic) lymphedema whose limbs can become massively deformed (and who may go years or even decades before LE is diagnosed--aaaugh!) Once the procedure is done, rigorous self-care must continue for life in order to maintain the benefit.

Lots of very promising things going on to help those of us with LE! Always wise to do your personal research widely and patiently when considering any of these relatively new developments. Be well!
Binney

Anonymous

Thanks for the clarification Binney. I did wonder if this was more pertaining to those with extreme symptoms, and Jen has sure had that. LE is SUCH A MONGREL OF A DISORDER and any relief therefrom is a very good thing.

Here's something I didn't know, that LE could cause fat buildup.

"A liposuction cannula was inserted into her arm, working its way from the wrist up and slowly sucking out the build-up of fat the lymph node removal had caused to collect in her arm.

The procedure took three hours and two litres of fat was removed.

The two surgeons regularly measured Jeannie's arm, ensuring the right amount of fat was removed to balance the look of the right arm with her unaffected left arm. "

Binney4

Exactly, Musical. The liposuction procedure has to do with removing the fat build-up, which is not an issue for many of us if therapy and self-care are effective in preventing or slowing its progression. For some, standard LE treatment is either not effective, not available, or not consistently followed. The fat buildup and tissue changes (fibrosis) that result are what this procedure addresses. Avoiding it is the reason that we do the therapy and continue to stay on top of it with the MLD and wrapping skills we've learned during therapy. Liposuction is not about curing LE, it's about managing the excessive fat build-up, which is unfortunately part of the nature of LE.

The fat buildup and tissue changes (and the elevated infection risk) are, in fact, why insurance covers what it does (which is rarely enough, and sadly with Medicare is especially lacking). It is not a cosmetic issue, but a serious medical one. We tend to think of LE in a more personal sense, as a distressing disfigurement. But medically it's a lot more complicated than that.

Sigh!
Binney

JenGrace

Hi Binney.  The procedure I had was Dr Brorson's technique.  New Zealand Breast Cancer Foundation paid for two Auckland surgeons and a Lymphoedema nurse to attend training at McQuarie Hospital in Sydney.  They also partly funded Dr Brorson to travel to Sydney to conduct the training of several Australian surgeons as well as the Auckland surgeons.  It took a year to work through with the DHB and finally on 23 March I had the first surgery of this type performed in New Zealand.  At its worst my arm was 77% larger than the unaffected arm and I had tried lymphatic massage, heavy bandaging and wearing compression garments, but my arm continued to grow.  After a period of time the lymphatic fluid turned to fat and was virtually impossible to remove.  My arm was uncomfortable all the time, sometimes very painful, it made sleeping difficult and I had to be very careful not to injure my arm.  I had bandaging for two and a half weeks prior to the surgery and that probably reduced my arm by 1 litre of fluid, then the surgery removed almost 2 litres of fat.  I had to stay in hospital for a week so the surgeons could monitor me and so I could have regular antibiotic infusions but I was actually well enough to go home the same day of surgery.  I will need to wear a specially made compression garment for the rest of my life, 24 hours a day,  but that is much preferable to having to cope with an over-sized arm.  I am absolutely delighted with the results and would recommend this surgery to anyone with the same condition.  The Foundation will now lobby medical insurance companies to have this procedure included in their list of accepted surgeries and they are hoping that other DHB's will send surgeons for training in the procedure.

Binney4

JenGrace, what good news that all is! And what a great advocate you've been, not only for yourself, but for all those in NZ who will benefit from your experience. Your surgeons must be ecstatic too! I wish I could say all the surgeons here in the US who are doing liposuction for lymphedema were as well trained, but with your help in sharing your experience and the importance of personally researching the training of those offering this procedure, hopefully others will take note and be spared unnecessary grief. I'm so happy for you!

Be well,
Binney

JenGrace

Hi Musical

I have heavy compression bandaging for three weeks prior to the surgery.  Immediately after the surgery the surgeons put a very tight compression sleeve on me.  This was changed at two and seven days post surgery.  I now have to wear a tight compression sleeve 24/7 only taking it off for about 15 minutes a day for showering.  This is far preferable to having an over-sized arm.  I have a special aide to get the sleeve on with.  For the first few weeks I am also wearing a compression glove to stop the swelling in my hand.  There is still some swelling happening in my arm but I find that it is on the days that I do not do enough walking or exercise. 

Here is a link to the news item on TV One News in case you are interested in seeing it. 

https://www.tvnz.co.nz/one-news/new-zealand/kiwi-surgeons-offer-permanent-relief-lymphoedmea-sufferers

Anonymous

Jen, thanks for reporting about the bandaging and sleeve. Maybe if you can, a photo of the device to put the sleeve on would be great. Is the sleeve custom made from one of the known brands such as jobst ( I wear a custom jobst for my BC side and a juzo for the other side) or is this something totally new?. It's got me curious because as far as I'm aware, the compression sleeves we wear are especially designed to be worn daytime as this is when we move. Others here explain how that actually works way better than me. There's other garments to be worn at night when our limbs are dormant.

So pleased this has helped! With the level of discomfort and pain you've endured, I bet anything is preferable to going through that. LE can be such a hideous condition. I do believe exercise has got to be good on many counts. It's early days for you yet, but you will find what works for you and no doubt as a first for NZ they'll be keeping a good eye on you. As Binney says, it's great that your story is out there. Although some people here say they don't wear a glove, the general consensus is that it is necessary to stop the fluid building in your hand. That's something I'm particularly mindful of as it's very hard to deal with once it goes there.

If your LE is on your dominant side, that's an extra pain.

Thanks for the link. I'll go watch that soon. Think I'll go fix my link above too, and make it hot.

@Binney thanks for more clarifying. We really appreciate your knowledge and just putting it out there on how it is. I just can't imagine how horrible it would be if someone had this type of surgery from anyone with less than stellar credentials after you describing about how delicate this all is. This is just me, but If all there was to worry about was a bit of disfigurement my problems would be VERY small. It IS a life changing thing and there's much to do managing it on a day to day basis even if that's being mindful of the risks.

Binney4

Jen, thanks for the link--you're lovely! And you expressed yourself so well--a real encouragement to others who are struggling. The sleeve you're putting on at the end is a non-elastic one, looks like the kind made in the U.S. by Circ-aid, Juxta-Fit. Is that the one you wear all the time now? This is truly a very crummy condition--so glad you've been able to connect with good help. Curious if your surgeons are initiating and studies to follow their liposuction patients? Long-term studies are in short supply and would sure be a help to the whole lymphedema community.

Be well, and please do keep us posted!
Binney

Binney4

Joe Zuther (LymphedemaGuru), who is the head of one of the LE therapist training organizations in the U.S., just posted an article of interest on liposuction for LE. It's here:

http://www.lymphedemablog.com/2016/05/06/suction-a...

Be well, all!
Binney

Anonymous

Thankyou Binney for posting. Amazing!