Help with self-care… Videos

These two videos were created at Mt Wilga Rehabilitation Hospital so that people who could not come to the hospital for therapy could benefit from their program…. One video is for lymphoedema of the arm and the other for legs. Some of the video content is duplicated but has individual topics for legs and arms.. The portion which shows self massage is very important for self-care. What I have learnt is the importance of clearing the abdominal area… The “basin” which is the area below the rib cage between the hip bones and pubic bone. Using abdominal breathing and then massaging into this area, to stimulate the many lymph nodes we have in the abdomen, you can actually start to feel the abdomen gurgling when you do this. It is also something you can do several times a day. Remember … Clear the Basin… This is a great help for those with leg lymphoedema as the lymph from the legs can then be cleared upwards and then eliminated from the body. I hope you find these videos helpful..

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

The Next Step of my journey… 14 months post surgery

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Just a quick update to let you know I am staying at Mt Wilga rehabilitation hospital in Sydney. The internet connection via Telstra is not good!!! Very slow and drops out!! I am here for a review of my leg at this stage and to have intensive treatment to see if the swelling in my knee settles. Very happy with lower leg which looks “normal”. Each day I have MLD, laser treatment and then re wrapped as in the picture. (Complex bandaging) Bandaging remains on 24/7 except to shower. I have a Gym program to help stimulate the lymphatics and would also be doing a pool session but this has been vetoed due to low blood pressure. Instead I am walking a lot in the area of the hospital. I am learning new MLD techniques and will be measured and assessed for a new compression stocking as the leg has changed.

I think that the hardest thing with this LNT is the unknown. Where are we up to? Where are we going? What do we do while all that happens? Sadly there seems to be no set protocol for post surgery, every doctor seems to be a little different. I am very glad to be able to stay here for this treatment. I am able to focus totally on healing and improving my Lymphedema.

When I have better internet I will write more about this stage of the journey. This is 14 months post surgery. I am to be here for three weeks, so happy that the staff are lovely, my room looks onto a garden and is very spacious and to my health fund for paying!!! I have much to be grateful for..

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Always look at the funny side of life!!

Today on Facebook I saw a post of these cartoons  about Lymphedema… Each one made me chuckle so I had to share them.. They are available to buy as posters and here is the link.

http://jovipak.com/products/miscellaneous/posters

I think it is so important to keep a sense of humour when you are dealing with Lymphedema, yes there are days that we hate it and the care we have to give 24/7, but somewhere along the way we have all been in these situations…

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I hope these gave you a bit of a laugh too!!! Have a good day

Complex bandaging….. For difficult areas too!

One of the problems with complex bandaging is that some areas that swell are difficult to bandage and so when a friend sent me information about Coban 2 bandages I was very interested to see the various ways of treating different areas.. This is a link to the 3M page which has a variety of videos for using Coban 2 bandages. You will note there are ones for the hip and tummy areas also round the breast and chest.

http://www.3m.com/intl/ca/english/market/health/Coban/videos.html

Foam or comfort layer

Foam or comfort layer

Showing the two sides of the foam layer

Showing the two sides of the foam layer

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Compression layer bandage

The Coban two layer system includes two bandages, which is a lot less than the usual complex bandaging where the limb ends up looking very “padded” with many layers. There is one layer of foam or the “comfort” layer and then another layer that gives the compression. The other thing that makes this different from the usual complex bandaging is that the bandages stick to themselves… Not to you or your clothes but to themselves. This stops some of the slippage and makes it possible to bandage around the more difficult areas..

The friend who sent me this information has primary lymphedema and was introduced to this system of wrapping by her therapist and is trying it out for the first time. She was surprised that she could still get a running shoe on and that it was far less bulky than usual wrapping. So far she is happy with the results.. Her leg is looking very good but I know she works very hard to keep it that way, swimming, exercise and regular MLD and treatment.

Lower leg bandaged with Coban 2 layer lite with a sock over!

Lower leg bandaged with Coban 2 layer lite with a sock over!

As is everything to do with Lymphedema these bandages are not cheap but you can keep them on for a few days but must keep them dry. (I for see shower difficulties) They are also designed for one-off use… It maybe something you can speak to your therapist about, as another idea for treatment, but it may not be suitable for everyone. There may also be other brands available too and at different prices!!!

Following are some opinions on Coban 2 from therapists who use it… I asked the question on Linkedin groups to get an idea of its use.. It will not replace Complex Bandaging but it gives another option in treatment… It will suit some and not others.. I have removed names and business names from these comments but they are all qualified therapists working with Lymphedema.. ……

“Coban 2 is an ideal bandaging system especially for active people as it is easier to wear shoes & maintain a ‘normal’ lifestyle. Complex bandaging is bulky.”

“I have used coban 2 within our clinic with success. Both the patients and the therapists find it easy to use and have had success with it.”

“I use it all the time. It is fabulous, way better than the regular bandages. As a therapist I only rebadge twice a week so less contact time for patients and I. Much more comfortable for patients and I have had amazing results!”

“I was introduced to coban in 2009 and it changed my patients lives and mine as well. I was previously using only traditional bandaging which was challenging for my patients. Coban 2 provided my patients with greater adherence, improved function and mobility and they could wear normal footwear. Another plus is the comfort layer mechanically grips the skin resulting in less slippage. Wait times were decreased and less clinic visits are required for patients. I have use it for upper & lower extremity, fingers, toes, breast/chest wall & scrotal edema all with fantastic results.”

“I use the coband in a 3 layer pack (with an impregnated Zinc bandage) especially for my LE patients who are struggling with venous ulcers or broken skin. This is left on for 7days”

“And is there a difference between Coban 2 and Coflex TLC (two layer system)? Does it have the same results?”

“3M launched the Coban 2 Layer Compression System in 2006. It is designed for patients with ABPI’s of 0.8 and higher. Patients and clinicians alike were very excited with the new technology. The Coban 2 Lite was launched in 2010 as per the request of clinicians for patients with ABPI’s of 0.5-0.8, those less tolerant of high compression, new to compression bandaging, frail or less mobile. The comfort layer is a polyurethane foam with Coban backing. It is not designed to go on an open wound. An appropriate dressing is required to cover the wound. The compression layer is designed to be applied at full stretch to ensure consistency in the application process, optimizing patient outcomes. The two layers become like a soft cast as the they cohere together, resulting in less slippage for the patient. We have quite a bit of supporting evidence for the efficacy of these products.”

“Is the Coban 2 a reusable product? We’ve looked at adding it to our line but some of the therapists I spoke with were concerned with the cost when compared to washable, traditional short stretch bandages.”

“Coban 2 is a single use product – it can be applied twice a week versus daily bandaging for CDT – so saves on labour costs and patient time, but obviously more cost on product. Sounds like the way of the future but I hear that some patients cannot tolerate Coban2, so traditional bandaging will stay around.”

“How many applications of Coban 2 are typical before the patient leaves clinic care and starts self care? Is the patient responsible for paying for the Coban 2 applied at home?”

“If the client is wearing Coban for 3-7 days, how to they bathe, and what about the skin under the bandaging – does it get funky under there like it would in a cast?
Regarding fewer clinic visits, if the patient is taught how to apply the traditional bandaging, fewer visits can be achieved (as I’m sure most of you do anyway)
I do like the idea of less bulk and being able to don shoes. How are toes and fingers wrapped, and what about large thighs – is there a way Coban can stay up on conical limbs?”

“I was trained by 3M to teach other therapists to use Coban2 (Martina Reddick, RN, was instrumental in getting this product off the ground), and have been using it since before its launch almost three years ago at the International Lymphedema Conference that was held in Toronto. My clients love the bandaging system, as it is very thin and clothes and shoes are no longer an issue. Those who have used both systems will not go back to traditional short-stretch bandages. They wear the bandages for 3-4 days at a time, and, yes, in summer, just like a cast, it can be a bit itchy, but we use cornstarch, etc., to prevent that as much as possible. I have had wonderful results with it. The only problems I have had with it, are occasionally an edge is causing discomfort and the client ignores it, then it cuts into the skin. You have to be diligent about not having the edges roll and having your client TELL you when it is uncomfortable. It is cut and paste, so they can take scissors and cut the edge, if need be. With experience, that no longer seems to be an issue for me. The other problem is that, though the Coban2 has no adhesive (it does stick to itself so no need for tape), those who are allergic to adhesives are sensitive to this product. We have found ways to protect the skin and still use the product, though. The product works a little faster than traditional bandaging, and clients are being measured, generally, by 2 weeks of intensive treatment. Large limbs are not a problem, as this is a product that you can cut and paste, and you don’t need to worry about direction. You can go all over the place with it, which means you can be pretty creative with oddly shaped limbs. You can also use it for more than just limbs, such as buttocks, trunk, breast, chest. Fingers and toes are wrapped with a layer of just the coban2 lite 1 inch (which our clinic was doing already instead of layers of gauze). If it sounds like I am a fan, I AM!”

“Costs for the Coban2 bandages will vary. In our private clinic, clients pay for it. If they get it done at the hospital, the government pays. Our local CCAC (Community Care Access Centre) will provide them for free. I’ve convinced some of the insurance companies to cover it as compression that is part of the massage therapy treatment. It will depend on which country you live in, and what your health care coverage is.”

“I have used it on occasion for people that cant tolerate bandages but it really doesnt have enough compression in my opinion and in the states its expensive.”

“Yes I use it a lot. Its not difficult to learn to do compared to any other system – I went on a two day course here in the UK. You can still get good results with grossly distorted legs. The main benefits are that you can leave it on for three days, which makes it comparable cost-wise to things like Actico where you would leave for two days. The significant difference is patient compliance, because they can get their normal clothes and shoes on. I tell people to walk around as much as they can, and using Coban means they have no excuse not to due to not having shoes they can fit into. Its well tolerated by mostly everyone. When bandaging bilaterally, you need to be careful as the two legs can stick together overnight if ladies wear nightdresses, but this is easily solved with baby powder or cornflour. I like it, but I do tailor my bandaging and compression garments to each patient as I see them as individuals and lymphoedema as a very individual condition too.”

“I will be taking my Vodder recertification course in May and I will ask about that method. I’ll share any feedback I get.”

“I think 5 day a week therapy with MLD and bandaging designed with 1/2″ foam is much more effective and works quicker in the end. Changing the bandages daily reforms them to the size of their leg. The MLD is very stimulating to the system and is needed regularly. The Coban system works well in cases of CVI with legs still shaped likes cones. With the shape changes that often come with Lymphedema, the thin Coban does not provide enough pressure and shape to the bandage system. If you are really limited to how often you can see them, it is a solution. I just prefer to provide a better quality of care when possible.”

“You might find it useful to talk to Denise Hardy at Kendal Lymphology as she is a trainer in the Coban method and involved in the research too. Personally, I think this method is the future.”

“I agree with Linda. I just took my Vodder recertification 2 weeks ago and we discussed this with Robert. In the reduction phase when the client should be getting daily treatment normal short stretch bandaging should be used. You can bandage with long stretch on the foot to enable the client to wear regular shoes. However if you are not seeing the client daily Coban would be a good alternative.”

“I used the Coban 2 working in an OP Wound Clinic. It was a cost efficient solution for patients that could not come in daily or did not have too excessive drainage. If they were in an infectious stage or a scheduling spot not available in a lymphedema clinic, then this was a good solution. Foams and alginates were easily added underneath. Suspension and adherence to the compression (i.e. not removing the bandage) were good as well. I did not use the system as packaged for Elephantiasis patients.”

“For bathing with Coban 2 I recommend a cast cover. I have treated many, many people with Coban 2 and none developed “funky” skin or any type of skin problem. In my experience with teaching self bandaging very few patients choose that option, more are opting for night time compression devices that are less time consuming to don. With coban 2 there is less slippage compared to traditional bandaging. Also the option for a hip spica if slippage becomes a problem. This option works very well!”

Thank you for these responses … This allows patients to make an informed opinion on this treatment..

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Sue’s experience with Complex Bandaging..

Complex bandaging treatment for Lymphedema is time-consuming and restrictive while you have it done. Sue has had great results in combination with her Lymph Node Transfer… Some surgeons do this immediately after surgery and others later. It also depends on finding a therapist or Lymphedema clinic that can do this for you. Sue found it difficult to get this done properly after surgery but then found a new therapist and has had great results. I will be having this done in May to clear the last of the stubborn fluid from the mid leg area and to stimulate the nodes to grow and function more. I have to say it is like having a plaster cast on!!! Not funny but it does the trick. I also note Sue’s comment on how much money is spent on garments and treatment to keep the Lymphedema under control. This is something that not everyone is able to do, more financial help from health services in every country is needed. Everyone should have access to garments and treatment no matter where they live. I will add some links at the end on how to bandage..

Thanks Sue for this latest update and so glad your surgeon and Lymphedema specialist were happy!!

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My complex bandaging kit… Photo Helensamia

“Helen, I will have more to add to this but yesterday I saw my lymphedema specialist.  She was so impressed that her eyes filled with tears.  She could not have been more proud of my progress.  She had a photo in her cell phone of my leg the last time she saw me — the time she was so disappointed in its appearance.  Now that I had 8 weeks of compression wrapping and wearing a custom garment day and night, the improvement is amazing.  I see the surgeon tomorrow, and I hope that he will be just as pleased.  He, too, was disappointed with the last visit so I am hoping to make him proud, too.  I truly believe most of the improvement is from good compression wrapping.  I had compression wrapping in the past, but it was just a roll of foam, wound up the leg, nothing around the toes or the foot and two large and two small bandages.  The new therapist put foam pieces in stocking nets which I wore on my upper and lower legs, both sides, the toes were individually wrapped and there were compression pieces of foam on my foot and along side both ankles — and the foot was all wrapped up as well.  If everyone could get to a therapist is on top of lymphedema and knows the right way to wrap the leg or arm, there would be a lot greater improvement in their condition.  I never had manual lymph drainage during the 8 weeks I was wrapped and they don’t believe in the pumps.  I know how to wrap properly now so I can always wrap the leg if I notice some extra swelling.  The measurements taken yesterday confirmed that all aspects of the leg were down – as I said, I lost 58% of the fluid from the wrapping.”

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Wrapping toes too .. Photo google images

“Hi Helen – here is another update — I saw my surgeon yesterday. He was much happier with me than the last visit. I suppose it was because I finally did what he and my lymphedema doctor have been encouraging me to do — wrap the leg and then wear compression garments day and night! He did ask me whether he had done lymph node mapping before the surgery (I apparently was one of his first patients), and I told him that he had not. I think that means he could not be able to tell me whether any new ones had grown. So I will just have to guess at it! No matter, as it is what it is. If the surgery is as successful as yours, I really think they are there growing. My leg looks so much better — sure it is not a match for the other, but it’s good enough! I just know I cannot get lax about the compression garments. My insurance pays 1/2 of the cost — I just ordered one cocoa brown thigh high with toe caps and one blue with toe caps — my share of the cost $750! Now that would not be too bad if they lasted for more than six months. But I will have to replace them every six months. I wanted three stockings – black, blue and brown to match my clothes so that’s why I ordered them.

As far as the pump goes, my doctors do not like them. So I will probably stop using mine — it’s just another thing I won’t have to waste time on. When I think of all of the time and money I have spent since I got lymphedema, it makes my head spin. I don’t know if you remember this, but Betty Grable insured her legs with Lloyds of London. I think I ought to do that, too!.”… By Sue.. Thank you

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Full leg bandage .. Photo google images

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Full leg bandage.. Photo google images

This is a link to an article on Complex bandaging and videos to show you how to wrap for legs and arms..

https://lymphnodetransplant.wordpress.com/2013/04/16/complex-bandaging-includes-videos/

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

How is Sue? At last some news…

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I had been really concerned, as I had not heard from Sue for quite a few months. I knew that the surgery for a Lymph node Transfer had taken a toll on her, both mentally and physically, and that she had not been happy with the immediate results or been able to find a good therapist for follow-up care. The follow up and post surgical support is so important with this surgery and should be well investigated before setting out on the surgical path. This surgery is so new that it is often difficult to find support and understanding while you go through the process of waiting.. .. It takes well over a year to start to see results for the leg transfers and probably two or three years for the nodes to grow and really make a difference. In the mean time you are left wondering if it had been a mistake… Especially if the leg gets worse before it gets better. Sue had felt the pressure of all this and had gone in to hibernation till she felt things were better. Finding a good lymphatic therapist was the turning point for her and as you see some great results. There is no way of knowing if the transferred nodes helped this improvement as Sue has not had an ultrasound or MRI to show this, but I certainly hope after everything she has been through that those little nodes are in there somewhere.. These are part of the two lovely emails I received this week which made me so happy …. Sue is back and going well. Thank you so much for sharing this with us, as always I have used Sue’s words I find this keeps it more personal.

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“Hi Helen – I just wanted to finally touch base regarding my lymphedema. Truthfully, it was really bad until this past January. I started therapy at a new center, and in just 8 weeks – and this was done just by compression bandaging – no pump or manual lympedema drainage massage – my leg volume decreased by 58%! I am attaching photos that you can use if you want showing my leg before the surgery and now after – one without the compression garment and one with the custom made garment. I finally found a therapist who is totally up on lymphedema, and who helped me to get custom made garments. My old therapist told me I could buy them off the shelf. Not a good idea!

Also I am soooo excited by your lasted blog. Wow! I don’t know if I have had any new nodes growing, but perhaps the fact that my leg decreased so much in such a short period of time is proof that the surgery is working.

Sorry I have been off line for a while, but I was pretty down about my leg and I just wanted to have something good to share with our gang!!”

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“Dear Helen: Thank you for writing so quickly to someone who has been in another planet for a few months!! I would have loved to go to NY but I was in total bandages and foam pieces from  6th January to just 5th March of this year. Plus I had to wear a cast shoe that I got off of Amazon on the internet. It was quite a clunker! I had to deal with a whole lot of snow here and the cast shoe wasn’t the best option – all open with just a thin piece of material up the center of the foot, but wonderful to wear with all of the bandages – 12 of them plus four pieces of foam cut to fit back and front of upper and back and front of lower legs, plus ankle pieces, toe pieces, toes wrapped individually and foam piece on the top of the foot. All wrapped in bandages. I feel so free today that I am actually wearing this cute little pair of suede boots (ankle boots). Could not wait to get them on!

With my email were three pics – one before surgery and two how I look now – bare legged and in my new compression garment. If you got them please post them to the site to give others encouragement. I think my little lymph nodes may be helping, too. Too lose 58% volume in the leg in just two months seems to be a sign of it.
I also have to wear my night garment every night for the rest of my life. That’s a nylon boot with buckles all the way up. It’s not like the larger one I had, it’s easier to sleep in. After 8 weeks of sleeping with the bandages and foam, the night garment is easy for me to sleep in.
I have come to the realization that I cannot go without wearing my compression garment (custom made) every waking hour and the custom made night garment every night. My leg got so bad because I stopped wearing the off the shelf compression hose because they were causing more swelling and lines than they were helping me. I also learned you have to get custom made garments. The off the shelf ones are not designed for lymphedema in my opinion.
Also I know that exercise is important and I did not stop going to the gym every morning even with the bandages and cast shoe on. I was able to pedal the exercise bike with no problem as the pedals are wide. So exercise is also key.
I was so happy to see your results as it gives all of us encouragement. I do see my surgeon on 20th March and the lymphedema doctor on 18th March. I stopped seeing both because I was not happy with my leg and I knew they would both be disappointed. The lymphedema doctor would have probably discharged me because I failed to follow her advice and get the right kind of therapy. And guess what – it’s not the massage or the pump – it was all in the bandaging. My therapist now is really on top of the subject and comes from a major hospital group. They do not recommend the compression pump, but I do find mine to be helpful in breaking up the hard skin that was on my foot. Now my foot is really soft and is starting to gradually decrease in size.
Again please use any of this that you want to encourage others. We all have to stick together as unless you have lymphedema you really can’t understand it’s mental and physical challenges. I find that most people have never even heard of the condition!”

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Before surgery

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After bandaging and LNT

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With custom made compression on

“Sorry this is so long but I do want to spread this word – there is hope for us. Find the right therapist and treatment and if you can get the surgery, give it a try.”  Sue..

Thank you Sue so very much for these updates, it is such a help to others to see that progress can be made and that the complex bandaging can give great results and maybe the LNT too… Time will tell!!

Below are some links to previous posts about Sue and her journey  to find help for her Lymphoedema..

https://lymphnodetransplant.wordpress.com/2013/04/26/how-is-sue-going-in-the-usa/

https://lymphnodetransplant.wordpress.com/2013/06/07/sue-does-a-happy-dance/

https://lymphnodetransplant.wordpress.com/2013/06/01/times-are-tough-sues-update/

https://lymphnodetransplant.wordpress.com/2013/05/04/sues-progress-report/

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Sue does a happy dance!!

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Photo Helensamia

In Sue’s own words….

“I wanted to report on my visit with the surgeon today. Dr. Kanchwala was very pleased with the appearance of my leg, and I told him I had been only bandaging all day/night since last Friday. He pushed his thumb into the calf area, and noticed that there was not as much pitting, which means the fluid is starting to move out. My foot is still puffy and that’s because the foam compression bandaging does not touch the foot, though I have the cloth bandaging and a foam pad on my foot, and two compression pieces around each ankle bone. He also examined my leg incision and was pleased with there being no sign of infection. He told me this is a sign that the lymph nodes are working!
I am to continue with aggressive treatment, therapy and bandaging for two months, and will return to him on August 8th. He did give me permission to return to the gym; he said there is no need for me to walk slowly on the treadmill.

If after the bandages are removed, and my swelling is maintained, he will consider the liposuction, which will remove the fat that has settled in the leg, and this will mean I will have two matching legs. However, liposuction is not definite yet as it is too soon to determine if my surgery is a success.

As far as testing, he told me that he does not test the lymph nodes as he doesn’t want to take a chance of hurting them. There would be no use if the lymph nodes do not work, because he cannot repair them. They would be removed and that would be it. So I am glad, with my insurance situation, that Dr. Kanchwala did not recommend any testing at all.

So I am really pleased today, but still cautiously optimistic as it is too soon to tell if it’s just the compression bandaging giving the leg the good appearance, and the lymph node transfer not making any difference. But at least I have some hope today!” Sue

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Lymph nodes and vessels… Wikipedia

Thanks for your latest update Sue and so glad to hear more positive news…

Times are tough…. Sue’s update

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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.

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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.

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

Sue Starts Manual Lymph Drainage

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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.

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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

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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

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