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

image
Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Cindy.. 8 months post surgery with Dr Granzow

imageThis is a new update from Cindy after her surgery with Dr Granzow in December 2014. Always great to hear of people’s progress as this is a very slow process waiting to see results!! Any changes are good changes and give hope to others.

 

“Just got back from my post-op appointment with Dr. Granzow (in California). As I said, I was supposed to see him in June, but a personal loss prevented me from making that appointment. I am 8 months out from my December 2014 surgery. I feel wonderful. I am not using any nighttime compression. My right leg (the lymphedema one) is smaller in some areas than my left leg. There is no pitting. The overall volume difference between the right and left leg is 34 mil. In January 2014, the difference was over a 1000 mil. Unfortunately, around my knee area I accumulated excess fats and proteins under the skin. It is not fibrotic and it is not fluid, it’s just there. There is not enough there to warrant any type of lipo to remove it. I am still wearing my custom garment (Elvarex class 3) during the day and receiving MLD twice a week. I’ve chosen to be very conservative and let my lymphatic system really have time to heal. My plan is to cut back on MLD to once a week, then in a few weeks not wear any compression on Saturdays. As long as I have no swelling, I will maintain that for 6 or more months. Then I will go without compression on weekends. I’ve lived with lymphedema for 5 years, I am going to do everything possible to get the maximum benefit from this surgery. I sincerely believe that if I take it slow and not overwhelm my lymphatic system, I will one day be able to be out of compression more than I am in it. That is my longterm goal!

I flew for the first time in July. The plane ride was over 5 hours and I did not have any swelling (of course I was wearing my garment). Prior to the surgery, I was afraid to fly. Prior to the surgery, my leg still swelled even when wearing compression. I only started wearing a custom garment in November 2014. It was never suggested to me before. I always wore an off the shelf garment. I was led to believe custom garments were only for people who didn’t fit in off the shelf garment. False information!! I should have been in a flat knit from the very beginning. So much time is loss when you are trying to get treatment for lymphedema and that is a tragedy. Had things been addressed correctly, the fats and proteins would not have had a change to build up the way they did. Accessing MLD treatment is not always easy.

The psychological aspect of living with lymphedema is the hardest part (in my opinion). Always wondering what is going on under the skin. Praying the skin stays soft and pliable. Having to stay on top of it is exhausting. Ignoring it would be foolish.

Dr. Granzow and his staff are incredible. I know I am in very good hands. Any question I have is answered immediately. As incredible as it may sound, I am able to contact Dr. Granzow directly. My own research is what led me to Dr. Granzow. Being proactive is mandatory when you have lymphedema. Information doesn’t just come to you, you have to go out and find it yourself.” By Cindy

This is a link to Cindy’s surgery in December https://lymphnodetransplant.wordpress.com/2015/01/05/california-lymph-node-transfer/
Thanks so much Cindy for sharing your progress with others… Slow and steady wins the race!!! This surgery is not an instant fix and it can take a year to start to see the first signs of change and improvement. The new nodes grow very slowly so great patience is needed..

This blog does not replace advice and consultation with an experienced surgeon… Make sure to ask lots if questions and also find out about their pre and post surgery protocols…. Helen

image

 

Copyright © 2013-2015 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks