Sharing this article that I posted on Life in a wheelchair. Chris is doing some great work in the cancer community so I wanted to share this with as many people as possible … Thanks Chris for giving me this opportunity
Just a quick catch up to show you my legs early in the morning … The left leg had a lymph node transfer 2 years and 8 months ago from neck to knee.. As you see the calf ankle and foot are looking good in the morning and yesterday I did not wear a compression stocking. However due to my “Life in a Wheelchair” https://lifeinawheelchairblog.wordpress.com/about/ by the end of the day my ankles and feet swell because of all the sitting!! My Lymphoedema leg is worse but fortunatly they do go down over night. I sometimes feel quite sad that having gone through everything to try to improve my lymphoedema that another health problem, lumbar plexopathy, comes along to make things difficult. I am quite sure that had I not been in a wheelchair this surgery would have been a great success, in fact I do believe that without it my leg would be far far worse sitting all day. One thing I looked forward to after my LNT was to wear some fancy shoes but other than first thing in the morning my feet do not look good in sandles or little danty shoes!! How ever I found these little ankle boots that buckle up from top to bottom and stop the swelling.
This is also an adaptation for my legs being paralysed. During the winter I love to wear boots but I had not realized that my toes were curled under, as I put them on, causing a pressure sore. These little ankle boots ensure that does not happen as they open all the way to the bottom and I can make sure my toes are straight. So if nothing else I am learning to adapt and find ways that help my Lymphoedema even though I am in a wheelchair. I also elevate as often as possible, move my feet and ankles by rotating them with my hands, also bending my knees and I never forget to do some deep breathing, anything that helps!!
Today I got a call from the physiotherapy department at the local hospital for assessment. I hope that they will not only give me exercises to strengthen my upper body but also those that help the lymphatics. Today will also be an indoors day, as it is 38C, as we all know that does not help lymphedema.
How are you all progressing? Do you have a “catch up” for every one? Please add as a comment or email me so I can create a post for everyone to share firstname.lastname@example.org
Happy Thanksgiving to all of you celebrating..
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I am sure you are wondering when I was going to write again!!! I am sorry I have been rather slow at creating new posts. A few weeks ago I wrote “Sometimes Life does not go as you Expect,” which explained what had been happening in my life over the last six months. These events have really turned my life upside down but lately I have started to feel more settled and have felt the need to write again. Writing for me is a form of mindfulness that helps to keep my head a little quiet!! The last few days I have been thinking of how to approach my blogging and have decided to create another blog that embraces my new “Life in a Wheelchair”
Do not worry though as I will still continue this blog, “My Lymph Node Transplant,” as I believe it has become a wonderful resource for all those with Lymphedema, especially those who are considering surgery or who have had surgery for their Lymphedema. I love all the interaction that happens between people in the comments and the emails that I get from people. Please still continue to send me your stories so that I may post them, as by sharing our experiences we help each other. We have truly become an online community.
Just to keep you up to date with my own LNT which was now two and a half years ago. My leg is going well even though not an ideal situation in the wheelchair all day! My leg has good shape, knee and ankle bones show. I wear no compression at night and not everyday. I can go for a while without and then I wear it for a few days and it goes back to normal. Me leg is very soft, which is important, as that means fluid can be moved where fibrous tissue cannot, also still no infection which for me is a huge plus. My ankles do swell by the end of the day, due to sitting in my wheelchair, but this is Oedema rather than Lymphoedema, this swelling goes down each night. So I am happy with the results, not a cure but much better control and response to compression, MLD and elevation. This surgery is not suited to everyone but there are other options available now, lymphatic Liposuction and Lymphatic bypass. There continues to be improvement all the time as the surgeons become more experienced and document their work.
If you would like to follow my new blog then this is the link https://lifeinawheelchairblog.wordpress.com There have been a few teething problems with setting up the blog and some people have had difficulty following, I hope these are all resolved now, you do need to follow the new blog separately even though you are following this blog. I look forward to sharing my new experiences with you. Wishing you all well, Helen xx
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 email@example.com