Liz… Five weeks post op…..

imageGood morning everyone,
This is week 5 post op from Dr. Chang– I will be going for re-measurement of my left leg this week and I was told that prior to going for re-measurement, I should make the leg be as small as possible, so that I can get the max amount of support from the new Elvarex for which they are measuring me. The therapist told me to make sure the night before going I use the flexi-touch, then put on the quilted night-time garment on and on top of the quilted garment, wrap the comprilan wrap around the quilted garment…..I should go to her the first thing the next morning while I still have the comprilan wrap on so that I get measured at my lowest possible measurement and in this way, give full support to those new lymph nodes which are growing…..Wow–I guess they know what they are talking about..I even passed that by Dr. Chang’s therapist, Betsy.
By the way, I got my estimation of benefits, (EOB) 2 days ago for the cost of the surgery…anyone have any guesses on the cost of this surgery??? Thank God for insurance…
That is my plan for this week–the hottest days of the summer -in the mid 90’s..AND I have jury duty on Thursday—lol–keep on keeping on….Liz

Thanks for your latest update Liz.. It is great to hear your step by step progress… Thanks Helen

Sometimes life does not go as planned!!

image

I am sure that those of you who have followed my blog over the past couple of years will wonder why I have not done an update of my own progress. March 2015 was the two-year anniversary of my Lymph node transfer and I am very happy with the results, not a cure at this stage but a huge improvement. There will be more on this later…

The reason for my lack of posting is I have been very ill with another late stage effect of radiation and cancer treatment. I started to experience weakness in my legs, I had falls, my legs felt numb combined with pins and needles,(peripheral neuropathy) gradually it became harder to get up stairs and to walk in general. December 2013 was my first appointment with a neurologist…. 2014 was a very difficult year, full of doctors appointments many, many tests, scans, a biopsy, neurological tests etc. I was seen by two neurologists, an immunologist and also visited a Clinic that specialized in Functional medicine.( Combining alternative medicine and conventional medicine).By the end Of 2014 I was given the diagnosis of Radiation Induced Lumbar Plexopathy, a very, very rare and untreatable side effect of radiation that leads to paralysis of the legs due to damage to the nerves in the Pelvis. http://emedicine.medscape.com/article/316604-overview#a0101 Women who have had Breast cancer treatment can get Radiation induced Bracheal Plexopathy which leads to weakness or inability to use the arms and hands.

The first three months if this year was spent in hospital, doing intensive neurological rehabilitation, in the hope of regaining the use of my legs. Sadly this did not happen. While in hospital I learnt to use a wheelchair, and everything else I would need to manage with paralysed legs. We have had to sell our house and we will be moving into a home that is wheelchair friendly. Thank goodness for the help of those physios and occupational therapists who got my life back on track while I was in hospital. You can imagine there has been many tears coming to terms with this and I never imagined I could have something healthwise that was worse than the Lymphoedema!!!

It is very hard for me to write this, only 0.16% in 1000 of those who have had pelvic radiation  get this side effect. It can happen from 0-30 years after the radiation. It is difficult to get information and to connect with others but via the internet and the American Cancer Society I have connected with a couple of ladies. This is certainly not something they tell you about when you are having Radiation!!! No I am not starting a new blog at this stage, or trying to build awareness of this side effect!!! All my energy goes to getting through each day and learning to live with my new “normal”.

However even with all this the Lymphoedema journey still continues with I feel good results. Due to my illness I had to withdraw from the research program at Macquarie University Hospital Sydney as I could not have the MRI or Lymphoscintigram done. The measurements would also all be effected due to the muscle wasting of the legs, due to lack of movement. Since the start of the year I have not worn compression stockings, they are difficult to get on and uncomfortable on the sensitive nerves in my legs. Surprisingly my legs have stayed really good without compression. They are soft all the time, a bit of swelling in the ankles goes down over night and I have had no cellulitus since the surgery in March 2013… My lower leg is the same size as my good leg and the thigh a little bigger but does not get worse. Maybe a transfer to the groin as well as the one to the knee would have helped this but there will be no more surgery for me now!!!!

One of the things that is important for Lymphoedema is movement so on the recommendation of the rehabilitation doctor in the hospital I got a MotoMed machine http://abilityinmotion.com.au/products/movement-therapy/motomed/ This has been the best thing I could have done for the Lymphoedema and for my paralysed legs as it keeps the muscles moving and keeps the circulation going. I am unable to peddle, so the motor kicks in and I can do 25km of passive exercise plus I usually do 5km of active exercise, with my arms, for the upper body. This and deep breathing every day helps to keep my Lymphoedema in order, plus I elevate the end of my bed at night to help any swelling. Even the ankle on my good leg swells a bit sitting in a wheelchair all day, so there is double reason to look after my circulation.

I intend to keep this blog going and to share people’s stories and their progress. It has become quite a useful resource for those going ahead with surgery for Lymphoedema. Over the past two years I have noticed an increase in those having LNT and Lymphatic Bypass surgery, LVA, plus Lymph sparing liposuction to help their Lymphoedema, in both arms and legs. I think we are yet to find a 100% cure but there appears to be improvement, how big the improvement depends on the condition of the limb pre surgery and the care given post surgery. It can also take a number if years to see the ultimate response to surgery. Please keep sending me you stories and adding your comments to the posts, it is this sharing of knowledge that helps. Of course non of this replaces the advice of the surgeons who are looking after you, I am also glad to see that some of them are collect data on their results.. This is so important for the future…

Thank you to all of you who have supported me in the past year and who were aware of my problems, you have made it all a little easier to get through. Everyday for me is now a new experience……

If you would like to contact me please send an email to helenbrd@bigpond.net.au

image

Interesting Research articles

imageThese are two interesting articles from Toronto Physiotherapy written by Ryan Davey… Thanks for posting on LinkedIn so I was able to find them!! I am sure many would be interested in a medication that would help Lymphedema and also the research into why some experience weight gain with Lymphedema.. Always looking for articles that step into the future for Lymphedema and shine a light of hope on improvements to treatment.

http://torontophysiotherapy.ca/rehab-science-blog/cilostazol-holds-promise-for-treating-lymphedema/

http://torontophysiotherapy.ca/rehab-science-blog/untreated-lymphedema-promotes-weight-gain-by-altering-stem-cells/

image

Ryan Davey

Ryan Davey earned a PhD in Biomaterials and Biomedical Engineering at the University of Toronto, where he specialized in stem cells and regenerative medicine. While not writing and working with Toronto Physiotherapy, Ryan consults in the field of biotechnology.

Thanks to Toronto Physiotherapy for posting this information..

Toronto Physiotherapy
P. 416.792.5115
F. 647.436.1926
info@TorontoPhysiotherapy.ca

Lymphoedema… Not just in arms and legs

I saw this article via LinkedIn and it reminded me that Lymphoedema is not just something that happens to arms and legs, it can occur in any part of the body. This can be the result of secondary Lymphoedema or Primary Lymphoedema. For obvious reasons LE of the head, neck, abdomen, trunk and chest are much harder to treat. MLD becomes difficult and custom-made garments can have problems fitting correctly. When more than one area is affected people experience physical problems as well as a compromised Lymphatic system. There is little support or emphasis on LE for areas other than arms and legs, therefore it is great to see this article which is a patients guide to head and neck Lymphoedema.

image

Patient guide to head and neck lymphedema following cancer treatment
By Ryan Davey
Scientist and Business Owner

We just completed a little summary of the latest research on head and neck lymphedema (HNL) and thought we might share it with the group. The prevalence of HNL is very high in patients treated for head and neck cancer, but there isn’t a lot of information available on the condition, nor are there many clinical studies. If you’re interested you can find our patient guide here:

http://torontophysiotherapy.ca/rehab-science-blog/patient-guide-head-and-neck-lymphedema-following-cancer-treatment/

image

Thanks Ryan for allowing me to share this article..

Deep Lymphatic Drainage …. Update

imageI originally wrote about going for a session of Deep Lymphatic Drainage a couple of weeks ago. Yesterday I went for my third session and as promised I am now following up, as the therapy is a little different to usual MLD!!

Prior to seeing Shan at Shan Therapy I had been attending Macquarie Uni Hospital physiotherapy department for MLD and follow up post surgery care. The problem was there did not seem to be a protocol for this, as some doctors have overseas. Dr Massey likes all her patients to bandage and do MLD for three months after surgery… 24/7…. I found myself trying  this and trying that and I found that when I asked question I was given the “I don’t know” answer and the problems I was having with my knee after the surgery were also not being addressed. However my leg did reduce from the post surgical swelling using Ready Wraps and compression stockings and weekly MLD,  but then it just got to a plateau and my knee was worse than pre surgery, which was very scary.  It is not always good to be the first and to “blaze the trail”. I decided that I needed to find some help for myself. My body was feeling congested, I was struggling emotionally. I started to question why I would have had this surgery, being the first in Australia I had no one to relate to and felt quite alone. Thank goodness for the Internet and this blog which has allowed me to contact fellow patients overseas which has really helped. We call ourselves “the leg ladies.”

image

Visiting Shan for the third time I felt like I was returning to a safe haven, where someone would listen to me and help. At the start of each session we talk about what has happened as a result of the previous session, how is the leg,  how does the treatment need to be adjusted to make the most impact. I think that this is the difference in conventional MLD, as the therapy is always the same, at the hospital the work was all about the leg and not my whole body and we reached a stage where no more could be done. The lymphatics are all one network, each area affecting another, if they are not in balance you have no hope of helping the problem limb. Deep Lymphatic Therapy is MLD with extras!!!!

Once again I was laying on a bed of magnetised water and also around my head, Crystal Quartz were taped to all the main areas of lymph nodes. Shan said she would take a picture of me but not sure I am ready to share that picture on my blog!! Again Shan starts to work on the nodes and pathways using a Crystal Quartz wand, this feels warm, first the left arm is cleared then left leg, right leg and finally right arm. Each area is checked to see if it feels lighter when lifted and only then does Shan move on to the next limb. I am also given essential oils to inhale, these vary but we have used, Wild Lavender, Peppermint, Fennel, Fragonia and Ylang Ylang, dependent on what Shan feels is needed. The session lasts two hours and during it I have water to drink and before a detox tea of lemon, ginger, dandelion and honey. By the end I am ready to go to the loo!!!! I know some of you are reading this and going, “What is she doing, has she gone quite mad!” There are times that we don’t always understand why things work, but just have to except that it does and also that there are people who have the ability to heal. Some MLD therapist have been in touch with me and find it very difficult to acknowledge this therapy, but I say I have the results!! I now have two ankles the same size, the knee and thigh are reducing and look much better, my tummy and groin area have reduced, I notice this especially in the morning, I don’t feel congested anymore, I feel better mentally, I feel supported and best of all Shan has an answer for my knee!!! When you have surgery there is scar tissue, the muscle sheath or fascia can get puckered or gathered and this leads to the kneecap not tracking properly when you move it. Makes perfect sense as below my knee cap you can see a tight line, Shan is now working to release this and in time my knee should return to normal. All I can say is why could neither a doctor or physiotherapist recognise this or listen to my repeated, “There is something wrong with my knee when I walk!”  I also have exercises to improve the numbness in my lower leg and foot.

I  think that what is working is the holistic approach to my Lymphoedema in conjunction with the transplanted nodes, which are supported while they grow.  The use of different modalities including medical and alternative are all helping. I don’t believe that my Lymphoedema will ever be “cured” but I do believe it will be greatly improved and easier to manage…. A cure would be a wonderful bonus!! Thank you Shan for your help and if Rosemary were  alive I am sure she would be interested to see the progress.

image

Times are tough…. Sue’s update

image

Not so easy times.. Google images

Starting this blog I wanted it to be an honest account of living with lymphoedema and the process of going through surgery. When you live with Lymphoedema you just want it gone.. It takes over your life 24/7 … It is a constant battle to keep it under control and live a “normal” life. For this reason when there is an opportunity for a cure we grab it with both hands. A chance at life with no compression garments, no MLD every day, no bandaging, no infections, in fact a life free of Lymphoedema and the physical and mental anguish it brings. This is why we opt for surgery and the chance of a new life. We throw ourselves out into the darkness and hope for the best!! However what we find is that everyones results are different. Some fast, some slow and some very slow! We find there are hurdles along the way. We find that the emotional toll is more than what we expected. This is Sue’s latest update which I have shared in her own words, please send her your support and encouragement as she is struggling at this time.

image

I just what to be free of Lymphedema.. Google images

“I wanted to report to you on my doctor’s visit yesterday. This was with the lymphedema specialist; the surgeon I will see next Thursday. To put it mildly, I was very disappointed in my progress. My leg, according to the doctor, was the same or worse. There is a lot of pitting in the foot and the measurements have not decreased, despite a month of therapy and daily once or twice a day use of the compression pump. I do have to put some of the blame on my own shoulders, as I should have gone with the compression bandaging, as the doctor and my therapist recommended. But being that I work in a professional office, I thought it would be easier to wear the Reid Sleeve and take it off only to go to lunch. But this was not a good idea. So I am now in wraps all day with the exception of removing them to shower. It is not easy walking around in them, especially when I have to go food shopping, do laundry, clean the house, etc. But I have to bite the bullet and do my best. I am very discouraged as I am not seeing one bit of change in my leg. No knee cap, no bones in the feet, no ankle, the back of the foot is still puffy and unattractive as well.

I wish I had good news to report. I do not know if my surgeon will order any testing for me. I know with the insurance denials he may be reluctant to send me for expensive testing. I hope he will at least listen through his stethescope to see if there is a pulse at the site of the transferred nodes. But I don’t know.

I am doing my best to hang in there, but it is not easy right now. I do not regret getting the surgery as it at least offers some hope to some people, so I don’t have regrets about that choice.

I will report again after I see the surgeon.” From Sue

Thank you Sue for sharing with us this honest account of how you are feeling. I can relate to it totally… We have to remember the stories we see on the TV and in newspapers are only the success stories, that it is only recently the doctors are documenting their results. There is also far more experience with surgery for arms and it is therefore showing good results. However I still feel that that surgical intervention offers help for the future for both arms and legs. This includes liposuction, lymph node transfer and Lymphatic venous anastomoses. The progress maybe slow but we will get there eventually and by writing this blog people will have a better understanding, from a patients point of view.

image

I am so fed up with this… But what else can I do.. Google images

Primary Lymphedema.. Jessica’s story..

Lymphatic system

Lymphatic system (Photo credit: Wikipedia)

Primary lymphedema is a rare, inherited condition caused by problems with the development of lymph vessels in the body. Primary lymphedema occurs most frequently in women, it can be divided into three types.

Milroy’s disease (congenital lymphedema). This is an inherited disorder that begins in infancy and causes the lymph nodes to form abnormally, leading to lymphedema. This is responsible for between 5-10% of cases. It affects multiple limbs  and other areas.

Meige’s disease (lymphedema praecox). This hereditary disorder often causes lymphedema in childhood or around puberty sometimes in the 20s. It causes lymph vessels to form without the valves that keep lymph fluid from flowing backwards, making it difficult for your body to properly drain the lymph fluid from the limbs. This accounts for 75-80% of cases  and affects usually one leg and often just the foot, calf or ankle.

Late-onset lymphedema (lymphedema tarda). This occurs rarely and usually begins after age 35. This late onset Lymphedema effects about 10% of cases.

World wide there are millions of cases of Lymphedema but often they go untreated or undiagnosed. All types of primary lymphoedema have inadequate lymphatic drainage. The cause is not well understood, it is probably due to genetic faults or from abnormalities that occur in the development of the lymphatic system during gestation.

This is Jessica’s story of living with Primary Lymphedema from a young age and the impact it has on her life.  English is not Jessica’s first language  so I have edited some but not all her words.

“The year I turned Nineteen left an unforgettable mark on my life. My father died suddenly and I was taken by surprise, I was confronted with the strange path of fate and the unbearable feeling of the irreversible…Years later I would realise that in the same year I would again be confronted by something irreversible…. Primary Lymphedema.

Some months after my father died, my friends tried to cheer me up and we went together on holiday. It was a hot summer, I had some insect bites also before my trip I was working in a restaurant, to earn money for the holiday. During that time I noticed that my feet were swollen….but off course nobody knew what it was and nobody took it seriously.

Later I was diagnosed with primary lymphedema in both legs, at the time I was very frustrated with that diagnosis – although I did not really know the consequences then. I thought it was just horrible to have swollen feet during the summer… When I think of this now, it just sounds stupid… I would gladly to have that situation now!!

Eight years went by and somehow I adapted quite well: in fact most of my friends never noticed. Twice a week I went to the physiotherapist for manual lymph drainage and during the summer I had to wear some kind of compression stockings but only occasionally. The only thing I could not do was wear high heels during summer… so hello flip flops! I spent my years quite care-free: going on long adventure trips, working long days in the restaurant to pay for university and my holidays!

When I finished my degree I started working but on my way home one day I had an accident and I fell on my leg. It started to get swollen but I thought it was temporary and although I had a major infection I did not stay home from work. However as time passed I started to worry, doctors told me it would get better, but that due to my history of primary Lymphedema it would take more time. Six months of intense taping, bandaging, MLD and swimming, did not help it was still the same. I started to panic and visited lots of doctors and all they had for me was bad news, bad news and more bad news. That’s when I found out about the true burden of having primary Lymphedema ….. nobody knows anything about it…and you get the feeling you are the only person in the world with it.

I had lots of testing done, and people were freaking out about it. Visibly I have no big signs (except for my one leg), but the tests showed I have huge problems in both legs… When you are lying there under the scanner praying to get good news once, but the doctors think the scanner is broken because there is nothing to see… then you know that you have troubles.

Some of the things they said are still wandering around in this little head of mine:

“I do not know a lot… but I know that for 100% it will get worse.”
“When you will have kids, it will get much worse, you know.”
“And when you have kids, it is possible that they can have this too, because it is
genetic.”

Ohhhh! Thank you for the information! That makes me feel …. really desperate….!!!
But to stay positive, because I will not give in to this situation. What exactly can I do about it to get it better?

“You can do a lot of things, but it will not get better.” Oh!
“But you can stabilize it… With MLD, wear your compression stockings from when you
get up till you go to bed, swim a lot etc.”

Oh!

“And there are a lot of things you can avoid, so it will not get worse!!!”

Oh!

“Be careful with mosquito bites, long trips, alcohol, long standing, heat, warm baths, sunburn, avoid sunbathing, walking barefoot, scratches etc!!!”

Ohhhhhhhh!!!!!

Basically do all the boring stuff and stay away from the fun stuff!!!

I thought my life was over, I could never live with this new situation, but a year and a half later I managed to adapt somewhat to this new concept. The mind is strong and flexible and is the most intriguing thing I discovered the past year. What do I miss? What I miss the most is to be able to live care-free as I used too. I never thought I would miss getting out off my bed, seeing the sun and walking barefoot into my garden.

I might find a solution one day – hopefully but things will never be the same just because I know what I know….But then again I am grateful that I got to live 19 years care-free, unlike some children who are born with this…I started to check the internet and I saw the most frightening stories and pictures… I did not know what to do. That is how I found out about the lymph node transfer … and I jumped on the other roller-coaster a search for a solution!!!” Jessica..

Thank you Jessica for sharing your story.. It is not easy to put into words the daily struggle to find a balance and still live a fulfilling life. Jessica has been in touch with Dr Corinne Becker in Paris and may have a Lymph node Transfer in the future, but it is not an easy decision.

image

Looking after your Lymphedema.. Bandaging kit.. Photo Helensamia

Sue Starts Manual Lymph Drainage

Follow my blog with Bloglovin

Reid Sleeve

ReidSleeve.. photo Peninsular Medical

Today I am continuing the updates from Sue who has started regular Manual Lymph Drainage as the next stage of her treatment. She is using a ReidSleeve boot like the one above as opposed to the complex Bandaging as you can take it on and off as needed. These are created by Peninsula Medical and are available for legs, arms and hands. Please click on the link below for more information.

photo

http://www.lymphedema.com/rsleeve.htm

The ReidSleeve (U.S.Patents 5,904,145 5,916,183 5,196,231) is made from a soft foam core. This is specially designed to provide a gentle gradient pressure. The pressure exerted on the limb (arm or leg) is controlled by a series of Velcro® straps. This design allows the compression to be precisely tailored to the patient’s needs. The sleeve easily slides over the affected limb and then the compression straps are adjusted.

The outer shell is made of durable, attractive nylon, available in many colors. The inner lining is made of a blend of cotton and lycra to provide maximum comfort while maintaining effectiveness.

Control of edema in the hand and wrist area is critical. The ReidSleeve incorporates conforming plastic plates to provide consistent, effective pressure to this critical area. The data from the original study demonstrates that the ReidSleeve is highly effective at controlling edema in this area. In a 4-week study, edema in the hands of affected patients was reduced by an average of 80%.

A specially designed gauge (U.S. Patent 5,904,145) is used to assess the pressure exerted over any region of the limb. The gauge is as easy to use as a blood pressure cuff. This simple procedure insures that compression applied to the patient’s limb is consistently applied and in the proper range to provide optimal results.

Patients can fit the sleeve in minutes without assistance and have the confidence of knowing they are applying the most effective pressure. As the patient improves the ReidSleeve can be adjusted to the new limb size thereby maintaining the proper pressure range.

Advantages

photo

Reidsleeve.. boot.. photo Peninsular Medical

•FDA Class I (880.5160)
•Higher compliance than wraps or pumps
•Less expensive than pumps
•Easily applied in minutes by the patient
•Quickly and reliably adjusted to a precise and consistent pressure
•Can be easily fit and followed by physician, nurse or therapist
•Comfortable
•Provides the patient with effective therapy, while raising self-esteem and encouraging self-reliance
•Quality materials and manufacturing in the USA
•Developed by a physician

Sue says
“I am with you as to this being an up and down emotional journey. I started MLD therapy last Monday (am going three times a week for a month at least). I wasn’t real happy when my therapist measured my leg and it was far worse than it had been when I started the second series of MLD treatment from 12/2011 through 4/2012. I am hoping that because she had not seen my leg right before the surgery, that this may not be as bad of news as I thought. I am wearing a Reid Sleeve for now, since it’s easier for me to wear this big compression “boot” from toes to hip than dealing with the foam compression and elastic bandaging. But if the swelling is not significantly better by this Monday, I am going to have to use those darn bandages. I personally see small changes in my leg, and I am just going to have to be patient. The surgeon said 6-8 months to see if it worked.

If the surgery is successful, then he will do the liposuction to clear out the fat and protein that have settled in the leg, but again only if the surgery is successful.

I have now returned to work and am glad that I did. Thirty days out of work is enough! I wear the big boot all day and just remove it when I have to go out to lunch or anywhere in public. I just don’t want the stares or questions. It looks like I have a broken leg. Who wants to go into details about lymphedema and now the surgery with strangers who have no idea how difficult living with lymphedema is!

Also, I am back to using my pump daily at the instructions of the therapist. I seem to think it helps to use the pump along with the compression boot. When I stopped using it for a few days, I didn’t notice any increased swelling but no less swelling either.

I was happy to read Jennifer’s post. It is good to know what to expect later on down the road!…” Sue

To all the mothers out there I would also like to say a Happy Mothers Day today

Unknown

Google images

My new leg wear!

image

Ready Wraps by Solaris.. Photo by Helensamia

Yesterday when I saw the physio she felt there was improvement in the leg. She felt that the leg and the transplant were softer and looked better. The L-dex reading had gone down a little to 22 so a slight reduction in swelling. The Doctor has now allowed me to do what ever movement and exercise I can, or that I am capable of,  which is not much! To this end I now have exercises to strengthen the leg and get the full range of movement back. Everyday it feels stronger but I am still very slow and walking with Ready Wraps on feels like you have weights strapped to the ankle!

I Thought I would show you my latest leg wear as it is in exciting black instead of beige! I don’t know why compression garments are always beige, as it does not hide or disguise them, I can’t wait for one of those companies who do patterned sleeves (see below) to make some patterned leg wear too for Lymphoedema…. It’s there, we cannot hide it, so best make it a feature. These Ready Wraps are made of fabric similar to a wet suit and they Velcro around the leg. They come in four separate pieces, foot, calf, knee and thigh also a cotton stocking for underneath. Measurements are taken of the leg to ensure the right size pieces are ordered. One problem though is the stocking must be made for midgets,there is no way it goes to the top of my thigh, so I combine this with the tubular bandage I use for under complex bandaging. I pull the tubular bandage out the top of the wraps, so the thigh part does not rub, also round the ankle I leave some out to protect the ankle bones from rubbing.

I will let you know how well these Ready wraps work, I notice that they do come adrift a bit as you walk and I have to redo them a couple of times during the day. I also found that they worked better with the knee piece on first but the instructions tell you to put this on last. I found that if I did it last they did not hold together well but I guess everyone is different.

image

Photo Lymphedema Products

A friend found this site online that you can buy the ready Wraps called Lymphedema Products.. They are much cheaper than I  paid in Australia and they have many other Lympedema supplies too..

http://www.lymphedemaproducts.com/products/readywrap-full-leg.html

When I talk about beautiful sleeves and gauntlets for those with Lymphedema of the arm this is the company that creates them… I am waiting for leg ones …Please…

These  are some of the beautiful compression sleeves from LympheDivas

imageimageimage
“The story of LympheDIVAs began in Philadelphia when two young breast cancer survivors, Rachel Troxell and Robin Miller, developed lymphedema, a side effect of breast cancer treatment that can cause permanent swelling in the arms. Their physicians and lymphedema therapists recommended a compression sleeve as the most effective way of controlling the swelling. When they researched the options for the sleeve they found that the only ones available were rough textured, heavy, hot, beige, and bandage-like. Frustrated and dismayed over the lack of options they had for compression sleeves, Robin and Rachel met with Kristin Dudley, a fashion designer, to discuss their idea of creating a more elegant and comfortable compression sleeve.

In late 2007, Robin left the company. Soon after, Rachel discovered her breast cancer had returned. While she was being treated, she continued building LympheDIVAs, which brought her much joy during a difficult time in her life. Rachel died January 22, 2008, at the age of 37. Her determination and compassion to improve the lives of breast cancer survivors is very much ingrained in the spirit of LympheDIVAs.

Today, LympheDIVAs’ products can be found in retail locations nationwide and internationally. At Rachel’s request, her father Dr. Howard Levin and her mother, Judy Levin took over the responsibility of running the company which their daughter helped found. In August of 2010, Rachel’s little brother, Josh Levin, joined the company and is now running it with his parents. They all hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong and confident as Rachel was.”
image

image

The above images are all from LympheDivas http://www.lymphedivas.com/ and their story

Stepping back to move forwards!

image

Google images

Today I visited the Physiotherapist for measuring prior to seeing the Doctor on Friday and to judge my progress over the last 10 days.

Today a decision needed to be made as to whether the compression stockings were enough to reduce the post surgery knee swelling, or did I need to use compression bandaging.

Today going through my mind was  the saying, “You can’t make an omelet without breaking the eggs!” or as the saying says above, you need a little rain to make a rainbow!

Taking all these thoughts on board I decided to reach for the positives out of today and not dwell on the fact that the swelling in my knee had not improved. When I say I am stepping back to move forward this is taking into account the effects of surgery  and infection. The L-dex reading today was an improvement on ten days ago, from 34 to 24.8 and my measurements for lower leg and upper thigh were at pre surgery levels, but my knee, lower thigh and upper calf are another story, there had been no improvement in these measurements.  Ten days ago my left leg was 23% larger than my right leg, this has now dropped to 22.6%, I need to check on what this % was pre surgery for comparison. Prior to my Lymph node transplant I knew that results would not be seen for up to a year, even two years down the track improvements can still happen, maybe by six months the lymphoscintigraph can show improvement. What I had not thought about was what happens in between? How do you work with post surgery swelling and Lymphoedema all at the same time? I guess that over the next few weeks I will find this out!!!

The positives from today were to find out about two new products that I had not come across. The first was some gloves made by Venosan to use in putting on compression garments. I have always used rubber gloves but I forgot to take mine today and had to go to the chemist shop in the hospital to see if they had any. No rubber gloves but some very neat stretch material gloves with little rubber bits to grip the compression garments. They worked really well easier than rubber gloves, so I treated myself to a pair!!

image

Venosan gloves to put on compression garments

The second new product was called Ready Wraps, these can be used instead of compression bandages and are much easier to use yourself. I am told they are not so bulky and allow more movement. They are quick and easy to use at any time and are available for arms and legs…This is a link to a video..
Ready Wrap Donning Video

When I see the doctor on Friday he will decide what level of compression can be placed over the transplanted nodes to reduce the swelling in the knee. In the mean time I will continue my MLD and gentle exercise and although it feels as if I have slipped backwards at the moment, I will remember it is for a reason and to focus on the bigger picture, ahead when the rainbow comes out after the storm.

image

Ready Wraps by Solaris… Photo Solaris