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.
“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!!”
“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!”
“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..
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