Cindy’s update re measurements…

imageThis is an update from Cindy to make it clear how much work is needed both pre and post surgery to support the nodes while they grow. The measurements start from two years prior to surgery.

“I don’t want there to be any confusion over my leg volume and for anyone to think the size of my leg changed overnight, it didn’t! For eleven months before surgery I was diligent in getting my leg ready, compression 24/7, using my pump, MLD 3 times a week and I lost approximately 10 pounds in weight. In January 2014, I weighed 123-127(pounds), today I weigh around 115-117 (I’m 5’4″).

We do not have LDex readings, everything is done by measurements.
In June 2012, my leg volume was 9347, the volume of oedema was 674.
In January 2014, leg volume was 9766, volume of oedema was 1056.
On December 9, 2014 leg volume was 7801, volume of oedema was 220.
On August 4, 2015 leg volume was 7702, volume of oedema was 34. I’m reading all of this off a spreadsheet used by the PT in California.

My surgery date was 11th December 2014. As you can see from my numbers, I devoted all my time and energy to getting my leg as small as possible prior to having the procedure done. There is no way I would have been able to devote that much time to my leg on a permanent basis. Since having the surgery, I no longer need to do all of that. Though, I do wear compression during the day, MLD once or twice a week. Some weeks I don’t get any MLD treatments (either my therapist is away or I’m away)..It’s so important that people don’t look at this procedure as a miracle cure. Anyone who is thinking of having the surgery done, should know there is a lot of work to be done on their part, it’s not just the surgeon. Compliance is mandatory! ….. over the next few years I hope to see more improvement as the nodes grow. Slow and steady wins the race..” Cindy

27 thoughts on “Cindy’s update re measurements…

  1. Thank you Helen! Numbers alone cannot tell a story. It’s so easy to get caught up in the measurements (I was guilty of that!) The look, feel and mobility of the leg (or arm) tell the real story. The goal is to have a healthy (or healthier) limb. Numbers are important, but they are never 100% accurate.

    • Hi, thank you for your blog. From what I am gathering there’s not much change in the size of your leg ? But the mobility is better ? I am trying to see what benifit it is to do before under going the procedure ….currently my leg is about 2 in larger then my other , I also do the compression stocking from the moment I get up, night wrap garment and the nightly machine for about 7 yrs now to keep my swelling down as much as I can. I can’t find a therapist close to me to get the manual drainage done …I was hoping this procedure would Mae my leg normal in size even if I have to continue to do everything the same but from what I am hearing it doesn’t ? Cindy C

      • Everyone has different results post surgery dependent on the condition of the limb pre surgery… LNT takes more than a year to start to show results… It is not a cure but my experience has been that my leg stays much better, is soft, no infections and responds better to MLD and compression.. I do not wear night compression or use a pump and wear compression stocking only during the day .. Those people who have lymph sparing liposuction have limbs the same size but must wear compression 24/7 to keep it that way… Surgery is still very new but us improving all the time… Inly a qualified lymphatic surgeon can guide you as to what is best for you and answer your questions… Helen

      • My legs are pretty much the same size. Like Helen, I only wear compression during the day. My leg is soft and I have better mobility. I am 8 months post surgery. My intention is to try and pull back on daytime compression, just not yet. I want to receive the full benefit of the surgery. I’m not going to rush things. For now, the look, feel and better mobility is enough. Surgery is never something to rush into. It took me 18 months before I decided to have it done. Hope this information helps. There is always so much to think about when you have lymphedema. Good luck to you. Never hesitate to ask questions (on Helen’s blog) and to your doctors.

  2. Cindy,
    Hi:) I had my surgery at Christmas time 2014. I do not think there are enough pre-surgery instructions for getting the lymphedema impacted areas up to their best conditions prior to surgery. I decided early on I would take extremes to limit my sodium intake two months prior to surgery. For me–the sodium is the main part of my swelling. I maintained my wrapping at night and compression sleeve during the day. I am glad I did this –as I have read a few accounts that surgeries affected by excessive swelling. thanks for posting your information:)

  3. Cindy, good job! I’ve had lymph node transfer surgery in 2013 and lymphovenous bypass surgery this past May, but the results have not been great — though I have not had MDL therapy for over a year. I wear compression during the day and the night garment (what a misnomer, m ore like a big boot) when I sleep. I had my legs measured last week and there is a 40% difference in the size between the two. However, I will be starting wrapping and MDL therapy once again, four times a week. I agree, you need this diligence to show any improvement. Surgery is not the full answer. Also, I am preparing for liposuction later this year, and the surgeon wants my leg to be in the best condition possible. Keep up the good work!

    • Kimberly,
      I agree, there should be written pre surgery instructions and (better) post surgery instructions. I also think the instructions should be individualized for leg and arm. When you are having a node moved to the arm area, you need a wedge, not so with the leg. For me personally, swelling (prior to having lymphedema) would happen periodically. For example, I could never sleep with a ring on, unless I wanted to struggle to get it offin the morning. That’s why I hesitate to put all my faith in the measurements of my limb. My weight fluctuates throughout the day and so does the size of my limbs. It’s just the way I’m genetically made.

      • Cindy-agreed. I did find something out about a month ago I normally sleep on my right side -that is my lymph a demand side-just on a whim -tried just sleeping on my unaffected side and placed my lymph arm up by my head. The swelling was way down the next day.

      • It is one of the things the I really emphasise when people are visiting their surgeon for the first time… what is the Pre and Post operative protocol as it is so important.. And as you say different for legs and arms … This is not just about the surgery as the limb needs support while the nodes hopefully grow.. Helen

    • Bridget,
      If you have access to it, I strongly recommend MLD, compression and bandaging before any procedure. Lymphedema is mentally exhausting!!
      Good luck with your lipo procedure, I’ve heard wonderful things about it. Sounds like you are on top of things. It’s nice to know there are others walking down the same path.

    • Looking forward to hearing how the liposuction goes… Especially as you have tried everything else.. I hear it works well so long as you are prepared to wear garments 24/7 after to maintain the reduced size… But you will at last have two limbs the same size.. The other thing I have heard is it can be very painful for a few weeks after so make sure to have pain meds sorted just in case… For anyone thinking of having Liposuction done for Lymphoedema make sure the surgeon is fully trained in this area as it is not the same as liposuction to remove fat… This is Lymph sparing liposuction that preserves the existing lymphatic system.. A Dr in Sweden stated this 20 years ago and has ongoing good results.. Helen

    • Kimberly,
      That didn’t really tell you anything!! People that have had rotator cuff surgery (shoulder surgery) have their arm in a sling, and there is a little wedge they stap around their waist. The wedge, props the arm out and up. This way their arm isn’t hanging down. They use the wedge when they transplant a node to the axilla area. When I got my pre-op instructions, it told me to buy a wedge. When I questioned it, they said it doesn’t apply to leg patients. Separate arm and leg instructions would be a good idea.

  4. My concern about having the lymph node transfer surgery is will I get lymphedema at the donor site. My doctor is in NYC and we have completed testing lymphosintigraphy, & MRA. He said the lymph node mapping will make it easier for him to see which lymph nodes to use in the transfer. I have l had lymphedema in my left leg for the past 4 years since my ovarian cancer surgery. My lymphedema got worse after a trip overseas and since then has been hard to manage. I wear a ready wrap during the day and just elevation at night. Compression is not my friend, we have tried every stocking you could think of including custom, but wearing a stocking makes me swell. I tried the Tribute night time garment but it does not help at all. Wrapping by my lymphedema therapist gave me sores and was extremely painful. My swelling is mainly in my thigh but by the end of the day my foot and ankle are enlarged.
    Right now I am back in lymph therapy, and will probably have the surgery since I was told I was a good candidate for it.
    Any suggestions to prepare me for the surgery and any help at all would be appreciated it.

    • Do everything your dr says pre and post surgery… Get your leg as good as possible before surgery and after be very very patient to see results as it takes a long time… This is not an instant fix it takes time for the transferred nodes to grow.. I have not heard of anyone so far who has got LE in the donor site… The drs try to take them from where there are plenty.. Who is your Dr??
      Take care and good luck

    • Hi Loretta,
      Get your leg as small and as soft as possible. For me, that meant MLD 3 times a week, compression garments, using my pump, staying off my feet (as much as possible) and elevating. Who will do your surgery? Ask a lot of questions about post-op. I was not allowed to put my full weight on my leg for 2-3 weeks. I’ve never read or heard about anyone getting lymphedema from the area where the node(s) were harvested. Good luck to you. My email is Feel free to contact me.

  5. Hi Cindy, was wondering if you could tell me how you got volume of oedema vs volume of leg. I am on the start of my journey having been diagnosed only this year with lymphedema. Aine

    • Ainebhi,
      Sorry to hear about your diagnosis, it is a lot to take in when you are first told you have lymphedema. Helen, I might need your help with this one. Measurements are taken of both your legs. My PT takes them every 4cm. These numbers are to totaled and a special formula/calculation is used to figure the volume difference between the two legs. I believe Helen can tell you about another method used. Taking measurements are not always precise. It helps to have the same person take the measurements each time. I’ve mentioned the method used by Helen’s Therspist (don’t remember what it is called) and my PT prefers using the tape measure. Hope this helps answer your question. I recommend asking lots of questions and doing a lot of research on your own.

    • My therapist uses a machine called an LDex which compares the volume in your bad limb compared with good limb.. It uses electrodes but have no idea HOW it works!!! Also they use measures and then a computer program to compare limbs.. This helps when you are having treatment to see improvement … Helen

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