Hi Elizabeth I am reblogging this to show people the difficulties of living with Lymphedema. I also want to share your words of warning about the sun and checking your skin regularly. In Australia with our harsh climate this is a very real problem… Thanks for your honest account right down to the shower chair…
Yesterday was my first visit to Lisa for Vodder therapy and the use of her laser on the scar tissue in my knee… How lovely to meet someone face to face that you have previously met via blogging!! The treatment went well and I will return next week for another session prior to tests the following week.. At the end I said “Who is going to write the blog”. Lisa got the short straw as I feel a bit flat writing about myself at this stage!! Anyway I get to reblog and share with all of you and say a big thank you to Lisa for seeing me and becoming part of my journey with this Lymph Node Transplant/transfer…. Thanks
I’ve been following Helen’s blog (https://lymphnodetransplant.wordpress.com) since before she had her amazing surgery back in March. Before then, I had no idea that it was even possible to transplant lymph nodes and so I was very interested (and to be honest, excited) to see how she went. Helen has been very open with sharing the ups and downs of her surgery and has continued to bring information on lymphoedema, manual lymphatic drainage, exercise, self massage, bandaging, compression – all the important things when dealing with lymphoedema. I’m sure her blog has brought answers to many out in the real world who are looking at options to manage their lymphoedema, as there’s not much available written from a patient’s perspective, the info that is out there is all in doctor speak.
I received an email from Helen after my first week of Vodder training – she had calculated when I’d be…
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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.
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.
•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
•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
“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
The above picture shows my complex bandaging “kit” and the links to the above videos show how the bandaging is done. Please click on the links to view.
Prior to the bandaging a Manual Lymph Drainage is completed to give the limb the best chance of reducing. This procedure can be completed by a qualified Lymphatic therapist, it can be taught to family and friends and can be self administered where possible. There are many other videos on You tube that teach you how. This is especially helpful if local resources are unavailable or there is a lack of health cover for treatment.
“Bandaging consists of four layers: stockinette, cotton wool bandages, foam padding and low stretch bandages, applied in that order.Stockinette protects the skin and absorbs perspiration. Cotton wool bandages also protect the skin and help to produce a regular cylindrical shape to the limb by reducing shape distortions and deep skin folds. Low density foam pads protect potential pressure areas, reduce shape distortions and soften areas of fibrosis. High density foam is used to soften and reshape fibrotic areas. Low stretch bandages are used to apply necessary compression to the limb. They have a high working pressure and a low resting pressure providing a firm but flexible support to the limb, causing tissue pressure variations as the muscles contract and relax against the resistance of the bandages, thereby stimulating the muscle pump. These bandages are applied according to the Law of Laplace in order to provide greater pressure at the distal end of the limb than at the proximal end. Pressure in the tissues is thereby increased, assisting the passage of oedema fluid from the tissues into the lymphatic vessels via the lymphatic capillaries, and lymph flow through the lymphatic vessels to assist drainage. In addition, bandaging helps to soften fibrosis, restore elasticity to the over-stretched skin and re-shape the limb.” Ref.The Adelaide Lymphoedema. Clinic
When I was first diagnosed with Lymphoedema, after much searching, I found a Lymphoedema unit at the Mt Wilga rehabilitation hospital in Hornsby NSW. I spent five weeks driving backwards and forwards everyday, an hour each way, while treatment was done to reduce my Lymphoedema prior to a compression garment being fitted. When I arrived each day at the hospital the bandages were removed and I would have a shower. The therapist then performed MLD prior to replacing all the layers of bandages. I used to feel as if I had a plaster cast on but as the day progressed there would be a little movement possible. On the weekends I bandaged myself, otherwise the bandages were on 24/7 for five weeks. At the end of this time I was measured for a compression garment as it was felt that the leg had reduced as much as possible. I have to say I was very lucky at that time to live in Sydney and to have the help available, also that we had always paid a private health fund as Medicare did not cover this treatment. It is now possible to get five sessions a year covered by Medicare with a special referral from your GP. The importance of the bandaging is to reduce the limb as much as possible, it can be used on a regular basis or when the Lymphoedema flares up due to infection or hot weather etc. I will bandage myself if I am having a problem but I did return to Mt Wilga for a week in 2009 when I had a bad fungal infection that affected the skin. When you have Lymphoedema you are so vulnerable to infections, so it is important to look after the integrity of the skin and the condition if the limb.
The bandaging works by putting pressure on the muscles which creates a stronger pumping of the lymphatics, it also pushes the lymph into the deeper lymphatic vessels rather than those nearer the surface. The bandages are tighter at the bottom than the top therefore pushing the lymph up the limb towards the torso. Having them on 24/7 ensures this process continues day and night and does not swell again during treatment.
Videos of self massage to help with lymphatic drainage…. Manual Lymph Drainage
I thought that this set of videos would be very helpful to learn self massage to help with lymphatic congestion. They are created by Heather Wibbels and are very clear and informative. They are available on You Tube and I have given the link to all six videos.. I have not mastered the art of embedding videos yet, at least not from an iPad! Please just click on the underlined links to view. I hope you will find them helpful and remember that if you have had lymph nodes removed, but do not have Lymphoedema, it is still important to self massage, it is very good for building the immune system and for general good health.
Thanks to Heather Wibbels for creating these videos and her generous giving of time in the making of them… Thank you
The American Cancer Socity also suggested I share this link to there web site… It gives information on Lymphoedema after cancer surgery.. Please click on this link
American Cancer Society Lymphoedema… Thanks
It has been a month since my surgery and I thought it was maybe time to show you how the surgery incisions are healing.
When the doctor and I were speaking prior to the surgery I had thought that this incision would be higher on my neck and more noticeable. I was very pleased to see after surgery that it is along my collar-bone on the right hand side and can be easily covered. However I am amazed at the way it is healing and after only a month it is looking very good. The doctor used dissolving stitches for this incision and as these disappear the scar is getting flatter and smoother, of course I use vitamin E oil on it every day, I swear by that stuff for healing scars!
Below are two Photos of the incision in the side of my left knee where the Lymph nodes from my neck have been transferred to. These were taken at 1 week and 1 month after surgery.
Unlike the neck incision these stitches were not dissolving and had to be removed. Due to the infection these were taken out after three weeks rather than the normal two weeks. I was very glad to have them removed as they had started to really pull, but as you see a week after the stitches were removed the scar is looking flatter and healing well. The swollen knee is a “work in progress” and should gradually reduce in size, though it is less swollen than the first week after surgery. (Angle of picture makes it look worse).
Everyday I have a routine in the mornings of Manual Lymph Drainage , which I do myself, and the exercises for the lower limbs to improve Lymphatic drainage. I then put a dressing over the scar on my knee to protect it from any friction caused by my compression stocking, that I then put on. I order my compression stockings from America, a company called Ames Walker. I find they are about a third of the price, (to Australia), good compression but finer and I am lucky enough to be an off the shelf size. Over the years I have had various garments many custom-made but have now settled for just the stocking and tights for stand-bye if needed round tummy.
After all this I need a little rest!!!