Latest news from Cindy.. Can I let Compression go?

imageHi all,
Hard to believe that 2/11/16 is the 14th month anniversary of my VLNT with Dr Jay Granzow. I continue to do well and am able to go a few hours without my garment with no visible swelling. I say a few hours, because I am afraid to try it too often. The surgery has given me a normal size limb. I no longer have discomfort and have regained full flexibility in my leg. I no longer wear a nighttime garment. I have taken plane rides ( with my garment on), spent all day on my feet (with my garment on), and I only receive MLD treatments once a month. I no longer use a pump or do any wrapping. Clearly, I am in a better place.

What I didn’t anticipate was how hard it would be to let go of my garment. There is a certain about of comfort it brings me when I wear my stocking. When I don’t wear it, I spend most of the evening worrying about my leg swelling. The surgery has made the physical aspects of living with LE more manageable. The psychological aspect of living with LE still lingers. Not sure how I will get pass this. I still feel like LE is the focal point of my life. The point of the surgery was to free me of having LE run my life.

Prior to my surgery, I spent years trying different remedies. I worked with a nutritionist, took herbal medicines to help move the lymph, took rutin, red clover, medicinal oils, kinesio taping, cold laser treatment, red light treatment, reiki, mindfulness classes, yoga, acupuncture on my good leg, vascular ablation for a vein not working on my LE leg and colonics. These are the things I can remember doing, there may be more. Desperation has you grasping at everything. Think I have owned every brand and weight of compression stocking available. The money I have spent is something I try not to think about. I tried to find a doctor that could help me manage my condition….there was no one. I found little to no interest in the medical community. I was on my own!

Today, I have Dr Granzow and his incredible team. I have an awesome local PT who coordinates with my California PT. I drink lots of water during the day and really think that helps. I start the morning off with warm water, squeezed with lemon. When sitting, I always do my ankle pumps. I do belly breaths all the time. Whenever possible, my legs are elevated. LE is the first thing I think about when I wake and the last thing I think about before I go to sleep. I’ve decided that going without compression for a whole evening produces too much anxiety for me. My new plan is to take the garment off 1-2 hours everyday (or almost everyday). LE is a constant journey, it doesn’t have an end. I’m sure my friends are sick of hearing me talk about it.

Most people think surgery means I’m cured, I’m not cured. I’m more comfortable in my garment and my leg looks normal. Clothing and shoes fit better. I’m trying to learn to be comfortable out of my garment and not panic if I do see some swelling. Easier said than done. So, my next major battle is trying to let go of my anxiety as I try to let go of my compression garment. Once I am able to do that, I will have to be prepared for any possible swelling and not freak out! If swelling occurs, I’m sure it will subside, the surgery has improved the health of my leg. I still need to work on the health of my mind. My journey continues, thankfully I can share it with all of you. By Cindy..

These are links to Cindy’s previous posts

https://lymphnodetransplant.wordpress.com/2015/11/29/cindys-update-on-the-funding-issues-for-those-with-lymphoedema/

https://lymphnodetransplant.wordpress.com/2015/12/21/one-year-after-lnt-cindy/

https://lymphnodetransplant.wordpress.com/2015/08/06/cindy-8-months-post-surgery-with-dr-granzow/

https://lymphnodetransplant.wordpress.com/2015/01/05/california-lymph-node-transfer/

Thanks Cindy always great to hear your updates. The psychological aspect of Lymphedema is often not spoken about but it is very real.. Cindy is happy to answer any questions and connect with others who may be having surgery… Helen

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7 thoughts on “Latest news from Cindy.. Can I let Compression go?

  1. I believe we end up with a body dysmorphic disorder type issue. I am no longer wrapping (14 months out from surgery) and just stopped using the compression sleeve. That was the hardest part for me. Because the arms looks bad to me–I have to measure several times a day to assure myself that it is indeed still the same size. Hope all continues to go well for you. thanks for the update!

    • Gosh that is interesting that you do not see the arm as being smaller… I wonder if a psychologist could help you with that or is it just that it takes time to see your arm differently.. Let us know if over time this improves for you… However so glad that the surgery has been successful ..🙂 Helen

    • Interesting–
      I see that my leg is smaller. I am very fearful that it will gradually get big again and I won’t notice until it becomes very visible!! Then I will have to work on getting it back down. That scares me (a lot)!!!

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