Summer 2017: The Lymphedema Edition.

Happy Saturday Everyone!

Today is all about markets, buying locally grown fresh fruit and vegetables and spending time with the family… a typical Saturday at our place!

I wanted to share with you all an article I wrote and just published on the Chronically Motivated website (www.chronicallymotivated.org)- it’s all about Summer 2017 fashions and making it work for our lymphie limbs (arms and legs included!!). Click here for the link and check it out!

 

VIDEO: Dr Corinne Becker and VLNT

Hey Folk,

I wanted to share this great little video that has been made about Lymph Node Transfer and follows two specific patients of my surgeon, Dr Corinne Becker.

The results of the young girl speak for themselves. Truly incredible. I’m not suggesting that everyone will have this same result following a LNT, because we won’t. We are all different, our bodies are different, but it’s not to say we can’t have similar results.

A few points I want to highlight from this video are:

  • Lymph Node Transfer is possible in 98% of patients with Lymphedema
  • They take fatty tissue with with three or four lymph nodes attached as well as an artery and vein ensuring blood supply to the nodes.
  • The whole unit is transferred to the area of the body where the lymph nodes no longer function- Just like they do in a finger transplant.
  • The lymph nodes don’t know they have been moved so they continue working.
  • They pump out the liquid and create new lymphatic channels at the same time.

 

SAPL Surgery – the second step!

Hey all,

Gosh its been a while since I did an update on the blog; but not much has happened up until recently. (If you want more regular news from me, its best to follow me on Instagram @lymphosaurs_rex)

I recently went to Paris for “stage two” of my Lymphedema surgery plan and had a liposuction procedure (SAPL) with Dr Becker. The goal was to remove the fibrous tissue (mainly on the exterior side of my left left) that has accumulated over the years of living with LE. To the naked eye, it looks like nothing but a fat leg, but when you touched my leg it was kind of harder in some spots than others.

 

The procedure took about one hour and I was a day patient at the hospital (no overnight stay required). I never really had a huge amount of pain (stopped taking the pain killers around day 4) which it great (although a lot of people have a great deal of pain following a liposuction procedure- everyone is different). My leg is more tender than anything.

Following the surgery, I have been advised to wear bandages (tighter than how I usually wear them) for one month in total (24/7 ahhhhh!). It’s been 12 days since the operation, so I still have a few more weeks to go… Its challenging to say the least when it comes to dressing for the day, going to work, riding a scooter around, looking after two kids under 3 years old, running a household. I’m tired.

 

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There is a lot of post-surgical swelling (my knee is so tight and swollen I can hardly bend it). The first week following surgery, I had SO much liquid in my groin and stomach, it was horrible, like wobbling Jelly on a plate. Luckily that subsided quickly! Now my leg is just mega hard everywhere, extremely swollen around my knee and bruised. Despite this, I can see its already smaller and taking shape. Once the post-surgery fluid build up has gone, it will be exciting to see the results. Now what I really need to do is wait a good year to let the lymph node transfer continue to work. Im still not even at the one year-post op mark for that! They say its a good 2 years to see some good results- patience!!!!

I truly believe that Lymphedema can be controlled and minimised with a combination of different surgical techniques (and proper compression garments). Since the condition itself is complicated, one should not expect a straight forward surgical solution. My story is still ongoing, but for now I have completed the second step towards controlling my leg. Lymph node transfer, I feel, is an ‘honest’ procedure, that has the best results for LE patients. It really works on restoring the lymphatic system to be able to work independently. Combine this with SAPL (to remove fibrotic tissue), and/or LVA to restore broken channels — is an excellent HOLISTIC approach to lymphedema surgery. I believe that THIS is the way forward for lymphatic surgery and can work for a LOT of cases. Don’t be fooled by doctors claiming to heal you and bring you back to “normal” in one hit, because this probably wont be the case. Unless surgery is done at a very early stage of LE (or even in children- Oh my GOSH have I seen some impressive LNT results in young children- they are literally cured. Literally. Long case studies have been done on them and its just amazing to know for anyone who has a small child living with LE).

My next blog is going to come soon- its regarding the organisation that recently launched called Chronically Motivated (www.chronicallymotivated.org) which is a Lymphedema Lifestyle platform. Check it out and follow us on Instagram.

Bandaging Basics

Check out this little video I made to explain some bandaging basics! I’ve demonstrated how I bandage my leg and the materials I use. Maybe I will update this in the future, once I have completed by intensive bandaging sessions next month… but for now, press play 🙂

Ps: YES I have shorts on! NO you cannot see my butt!

8 months post-op

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Hi everyone,

It’s been 2 months since my last blog and lots has happened in between now and then. These last two months have really been an emotional rollercoaster for a variety of reasons. I’ve been very immersed in my own little Lymphedema world, researching, learning more and more (and also being disappointed with the lack of up-to-date information on the internet). I’ve been connecting more and more with others who suffer from this condition, listening to their experiences and stories (2 hour long phone calls to the USA, United Kingdom, Solvenia!), which has been incredible! It always feels like I’m listening to an echo of my own story when I speak with other Lymphies; the similarities are fascinating.

I’ve really had the urge to do something more with my blog, my story, my mission to raise awareness of Lymphedema, which in turn has been pretty draining on me mentally. I feel like there is so much to be done, so how can I make a difference? It’s a bit overwhelming when we (as individual powers) try to make a dent in big international problems… but I’m slowly moving forward on a few small projects/ ideas that I’ve had, so hopefully something comes to life soon!

In the meantime, I’m still being really active on my Instagram account and I’m connecting with more and more people who suffer from Lymphedema. Its truly amazing to meet so many beautiful people, who come from such different walks of life and to be able to help each other through this journey we are all living. I have spoken to many people (some at the beginning of their lymphedema journey, some who have suffered a lifetime of bad care and misdiagnosis, who have finally mustered up the courage to share their story and liberate themselves of their “secret” – using social media of all things!)… I can’t tell you how helpful each and every person has been to help ME in my journey also. You guys ROCK.

Now for some news on my leg.

Things are getting better and better, but there is still a long way to go. It’s only been 8 months since my surgery and I see more improvement than I did 2 months ago. My ankle and foot are the major areas of improvement. There has been a big improvement in my calf too. Everything is smaller and softer.

There are a few main reasons for these improvements:

  1. I have bought an ankle support called MalleoTrain (the brand is Bauerfeind, you can find them online and just need to supply an ankle measurement to get the right size). Since wearing this I have seen a HUGE reduction in the liquid around my ankle. Its been so hard to get any kind of reduction in this area so I am literally in shock at how well this ankle support worked. I’ve had a few people who follow me on Instagram buy one (after seeing my results) and they have told me its working really well for them too.
  2. Bandaging– I have been bandaging a lot more effectively these days. I try to bandage every night during the week (I put on my toe cap and the Malleotrain), and this has helped my calf a lot.
  3. Double compression– I have been wearing a knee high compression stocking under my full length flat stitch stocking (during the day time) and this really helps to reduce day time swelling. I find that when I take my stockings off at night, my calf is still soft like it was when I woke up in the morning. Winning!

It’s taken me a while to come to the above conclusions (and a lot of trial and error in the meantime), but finally I have found my special cocktail of “things that work.”(And boy do I love a good cocktail).

All the things I am doing are temporary measures, as its part of my plan to get the liquid out of my leg, reduce in size and then order new compression stockings.

Also, in February, I will start some intensive MLD/ Bandaging session in Italy. Doctor Denisa Giardini (she is based in Milan) has been helpful in organising this, so I look forward to seeing some more results following that. (I think I’m more excited about staying in Italy for two weeks and eating a tonne of pasta!!!)

xoxo

 

New night garment- Jobst Relax.

Wearing a compression stocking 24/7 is generally the pits. Anyone with Lymphedema can vouch for that. Day compression is different to night compression, which can present various issues for those of us still trying to figure this whole darn lympie life shizzle out.

For me, night time compression has been a real pain in the butt. Sometimes I wear my daytime compression stocking (but that gets uncomfortable and I rip it off during the night), sometimes I bandage (again, uncomfortable and gets ripped off in a 3am melt down when I just cant handle the discomfort any longer) and sometimes I sleep without anything on. Trying to find something that is 1) comfortable and 2) has sufficient compression ie: not too tight but not too loose, has been a challenge.

So when the moment comes that we find something that is actually really comfortable and doesn’t suck, we must share this information! Welcome to my life, Jobst Relax.

You can read more about the technical information here on the Jobst website, but there are three main points which are important for me:

  1. Very lightweight, flexible material which makes it really comfortable to sleep in.
  2. Flat-knit stitch- which is recommended as the best type for lymphedema patients.
  3. The texture of the stocking is interesting- it has a foam layer (kind of like the mobiderm product but its very thin). It feels spongy  and has a micro-massage effect to help stimulate the lymph flow.

My leg always feels much softer in the mornings when I sleep with it on. I generally leave it on during the mornings when I’m getting ready for work and then dress in my regular daytime compression when I leave the house. Before I felt a real pressure to chuck my daytime stockings on asap, but this is pretty easy to simply jump out of bed with and potter around the house in.

It is a bit warm in temperature, but its not something that is uncomfortable for the moment. I wonder how it will be for the summer months next year, but when you think about it- what actually is comfortable to sleep with during summer?! The product information explains that the stocking is:

made with COOLMAX® yarns and advanced knitting techniques to increase breathability, providing a cooling effect for high patient comfort.

So fingers crossed for 2017 summer months!

I’ve had a few people ask me already where they can order the Jobst relax from and I’ve suggested that they contact either their physiotherapist or Lymphedema care specialist to ask for more details. I ordered mine directly through BSN Medical so this is another option for those who are interested.

6 months post-surgery

Hey all,

We have arrived at the 6 month mark following my Lymph Node Transfer in May. It just so happens that Dr Becker was in my neighbourhood this week (yes, random I know!) and we took the occasion to catch up and check out the fatty leg.

Firstly, its still too early to see the proper results. Remember that a VLNT can take over one year to see proper results. This is simply because it takes time for the lymphatic vessels to grow in the body.

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With the lovely Dr Becker.

The best improvement so far is my upper leg. Especially my hip area which has gone down heaps. Its softer and smaller in size. My knee cap is also starting to appear again. Improvements are starting to be seen around my knee/ behind my knee and its a bit softer just below my knee. Dr Becker said that my calf and ankle are definitely going to need some more work in the future (which is so great to hear because it gives me direction and the next step in this puzzle!). My calf is kind of hard and my ankle doesnt respond much to MLD or bandaging at the moment, so she believes that a second lymph mode transfer around my ankle or middle calf will improve things greatly. She also said that typically, patients that receive TWO flaps (lymph node transfers) generally do heaps better than with only one (so keep that in mind for yourselves). I was told this before my operation so I knew what to expect.

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My next step is to have another LymphoMRI (hopefully I set this up for next week) and see how the vessels are growing so far. Dr Becker will be able to see from this MRI if they are still growing or have stopped. They should be still growing, she doesn’t think they have stopped but basically we just need to see how its progressing.

Also, another thing she wants to do to help improve my leg is some general liposuction. Upper leg, on the side of my thigh, which will make it exactly the same size as the good leg again. YEAH! At least this is one area we can say has “come back to normal” in a way. She will do this using a special laser technique that lights up all my lymphatic vessels and nodes in my leg, so that she can avoid damaging or touching these areas.

I told Dr Becker that I had booked a consultation at a special hospital (that has a division for Lymphology) to organise a week long intensive bandaging session. She advised me against going here and gave me the contacts to someone in Italy who is apparently the best person to be treated by. I’ll give them a call tonight and organise a rendezvous. Luckily we live close to the border of Italy so its not far to go.

Voila! Those are all the main points we discussed. It was really important for me to go and see her today because its given me some new direction and a renewed positivity about everything. The last few months have been hard and my ankle/ calf feel terrible- but now I really know what to expect for these areas and know my next plan of attack.

I’m going to approach my second operation very differently to the first time, because there is NO way I am going to be out of pocket money wise like before. I can’t afford another 20,000 euro operation, hello?!! The next time will be planned properly and insurance is going to pay back a LOT more. You know why? Because I’m going to fight my ass off for it. Others have done it in the USA and won, so why can’t I? Im going to schedule appointments to meet with my insurance company, discuss my case and make sure I have supporting documents from Dr Becker that explain everything in detail– so they can see the problem in its entirety. I will not stop until there is a reasonable coverage and reimbursement of surgery and hospital costs. Trust me, I am a stubborn bitch and won’t stop until I get what I need!

On another note, I was chatting generally to Dr Becker (who is just so fricken nice! How many times have I said this about her?!). I jokingly apologised to her for the influx of emails that carry my name as a referral “Sarah told me to email you about my lymphedema!”… and she laughed and was apologetic saying she is SO busy and just can’t get around to answering all those emails in a timely manner. So if you have emailed Dr Becker and haven’t had a reply, its because she is one busy busy lady. Try again until you reach her, or better yet, call her office and book an appointment to see her.

She also told me a story of how she had a Doctor training with her recently and explained to him that the majority of her patients cry in their first appointment with her. This is because they have been pushed away by countless doctors and specialists and told there “is no hope, you have to live with this, there is no solution,” and finally they discover that YES there is a solution, there is a possibility of improvement, and its extremely emotional for them. This probably sounds familiar to you, right? I know it resonated with me (because I cried AFTER my appointment with her haha).

Never, ever let a specialist tell you that surgery is not an option for your Lymphedema– they don’t know what they are talking about!! Get a real expert opinion, find a surgeon who does this microsurgery and take an appointment to discuss your case with them. Then, get that bad boy fatty leg or arm out in public with your beautiful compression garments on (vomit!)  and spread awareness of our condition.

Peace.

 

My Story…

Hi everyone,

Here is a link to the German TV show RTL.de that interviewed me about my Lymph Node Transfer.

It’s in german but you can hear my voice under the person doing translation.

x

Fibralign Announces Enrollment Initiated for Stanford-Led Clinical Trial for Breast Cancer-Related Lymphedema

This is a really interesting article which talks about the next exciting step in Lymphedema Surgery. I really like the sounds of what they are doing. My surgeon discussed this technique with me recently and she believed it was the  next step for surgery and sounded promising. Fingers crossed.

UNION CITY, Calif.–(BUSINESS WIRE)–Fibralign Corporation announced that Stanford University has started enrollment in its investigator-led clinical study to evaluate the efficacy of a new surgical device for treating secondary lymphedema.

The trial will evaluate the effectiveness of Fibralign’s BioBridge™ Collagen Matrix in supporting and guiding lymphatic repair in patients with acquired lymphedema of upper and lower extremities. Stanford plans to enroll at least 36 patients into the study, which will utilize BioBridge as an adjunctive interventional device for vascularized lymph node transfer (VLNT) surgery. VLNT is an increasingly practiced micro-surgical procedure for patients with lymphedema, in which an auxiliary lymph node is autologously transplanted as a tissue flap to the treatment area.

BioBridge Collagen Matrix

BioBridge is a sterile implantable biocompatible and biodegradable surgical mesh that has 510(k) clearance from the FDA for use in surgery to reinforce and repair soft tissue where weakness and deficiencies exist. The device is not cleared for the treatment of lymphedema. This novel medical device is made of highly purified collagen and is created with Fibralign’s patented Nanoweave™ technology. In a recently published preclinical study performed at Stanford University, BioBridge was shown to support and promote the formation of new lymphatic vessels (lymphangiogenesis) by encouraging endothelial cell attachment, alignment and migration, which are prerequisites for new lymphatic vessel formation.

“Based on results from our published successful large animal study, the research suggests that BioBridge has the potential to facilitate a truly successful surgical intervention that may restore lymphatic function, reduce swelling, and dramatically improve the patient’s quality of life,” said Stanley G. Rockson, MD, the study’s lead investigator. Dr. Rockson is Professor of Cardiovascular Medicine at Stanford University and Director of the Stanford Center for Lymphatic and Venous Disorders.

“First in Woman” Study Presented at NLN Conference

Later this week Fibralign will report preliminary results in a separate and ongoing pilot clinical study evaluating a new surgical procedure using BioBridge for treating patients with breast cancer related lymphedema. This study was initiated in October, 2015 and is being conducted in cooperation with Instituto Oncológico Dr. Heriberto Pieter (IOHP), the largest cancer hospital in the Dominican Republic. Preliminary findings from this study are being presented at the National Lymphedema Network (NLN) International Conference being held in Dallas, Texas on September 1-3, 2016.

“We continue to be impressed and encouraged by the progress that Fibralign has been making toward providing new treatments for lymphedema since the NLN first recognized the Fibralign with its 2014 Best New Innovator Award,” said Patricia Egan, CEO of the National Lymphedema Network (NLN). “In addition, as a lymphedema patient, I am grateful for Stanford’s research efforts and their collaboration with companies like Fibralign in developing new technologies to enable more treatment options.”

More information about this study and enrollment can be found at www.ClinicalTrials.gov (Identifier NCT02734979: “Prospective Evaluation of the BioBridge Scaffold as an Adjunct to Lymph Node Transfer for Upper Extremity Lymphedema”).

Full article can be found here:

http://www.businesswire.com/news/home/20160901005447/en/Fibralign-Announces-Enrollment-Initiated-Stanford-Led-Clinical-Trial

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Ex-Perth model receives revolutionary micro-surgery to fix Lymphedema.

I’ve seen a few different versions of my news article floating around on the internet and I have to say that they differ GREATLY from the words used in the original text that was approved to go out for the article.

Why must the media exaggerate and twist stories, particularly ones that are trying to bring awareness to important health issues, and turn them into circus freak shows? “Woman with a ginormous 12kg leg that is about to explode and ooze fluid and perhaps even eat her small children when she isn’t looking, can’t make the swelling stop and has no hope for the future!…”

I just want to clarify a few important points that these news outlets failed to mention (which were actually the whole point to my interview):

  1. I do not have fluid or liquid oozing from my leg. Nor have I ever had this happen!
  2. The average human leg weighs 9-10% of the weight of the entire body, therefore, as I weigh 53kg, that should mean that my fatty leg weighs about 5.3kg not 12kg (if we base it on 10% of my entire body weight). So… accounting for a little extra liquid, that would maybe bring it up to 6kg… okay lets be CRAZY! and say 7kg, maximum. (However, I always have weighed 53kg, even before babies, soooo…. as I still weigh 53kg I don’t know where this extra 12KG OF LEG FAT has come from!)
  3. Ex-Perth model stuck with 12kg leg after limb doubles in size during pregnancy“… Firstly, refer to point two above! Secondly, I am not “stuck with” anything. If the author had reported this properly, the headline would have read more like, “Ex-Perth model receives revolutionary micro-surgery to fix Lymphedema.” 

 

We are not circus freaks and Lymphedema is not a joke. Nor is it a life sentence. Thanks to advances in technology, we now have three surgical procedures that exist to treat our Lymphedema (not to cure it, but to alleviate symptoms to the point where is appears to be “cured.” We will always have a fault in our Lymphatic systems, but the physical results of that can be erased and greatly reduced to a point where both legs are normal, similar sizes).

Here is a link to a non-sensationalised article which I have found to be the closest to what I said in my interview.

https://au.news.yahoo.com/a/32426159/sarah-buller-diagnosed-with-primary-lymphedema-after-leg-ballooned-up-during-pregnancy/#page1