USA…… Update from Sue

This is the latest update from Sue in the USA, again I use her own words.

“The doctor seemed pleased with my progress, but I really believe that this surgery is so new to him that he is not sure what progress is. Since I have been living with this condition for five years, I know a lot more about my leg than he does. I gave him the photos we have been taking of my leg, and he was very happy to get those. I also gave him my measurements, which have been going down slowly. He told me it takes six to eight months to see any improvement, so I would not be concerned about our mutual slow progress. I am going back to work (I run a law firm – where I have worked for more than 30 years) on May 13. I am concerned that the return to normal activities may stop or slow the progress. I am just today feeling not as tired as I have been since the surgery.

I will start my lymphedema massage therapy on Monday, 5/6. I see a lymphedema specialist on 5/2, tomorrow. I never had a doctor who specialized in this condition. I saw a vascular doctor a few times, but he looked at my leg as if I had some strange contagious disease and told me I could try therapy but it would not help. Real encouraging!

I have been using my pump daily since Monday. The doctor told me there is nothing I could do to harm the transferred nodes. He did caution me about the gym though, especially using a bicycle.

There really is not a lot of helpful information out there. I have checked the website of Dr. Becker, the French doctor who came up with this procedure, and she has some information available there.”


4 thoughts on “USA…… Update from Sue

  1. Dear Sue,

    Your progress seems fine. I find it so interesting that we know so much more than our physicians. Stay positive and believe in yourself. You are on the mend!

    Best to you and keep the good news coming.


  2. being positive is a progress itself , what about you Helen i haven t heard anything from you about your surgery ??
    any news ?

    • I am waiting to have an MRI done at the end of May and see the dr in June … The MRI will show if there are any viable lymph nodes in the transplant… These may have been damaged by the infection that I have had after the surgery.. I decided that I would not write about myself till after this MRI so then I will know more.. At this stage I see no positive changes it is all very frustrating and much harder emotionally than I imagined… Helen

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