Update California LNT

imageLatest update from Cindy after LNT in California

“I wanted to update my original post now that I returned to work.

Just wanted to say that I am very tired by the end of the day. After work I come straight home and hope my energy level will soon improve. I don’t think my leg is swelling. I will get volume measurements tomorrow. Original measurements were taken from PT in California, which is a problem because different people come up with different numbers. Out of state (out of country surgery is difficult), the communication part is hard to keep up.

I am also having problems with my custom garment. I believe it is too big, as it bunches behind my knee. Prior to surgery I wore off the shelf compression hose. Custom compression garments are new to me.I’m waiting for my 3rd custom garment to come in, they are expensive. In the states my insurance will pay for them if I go through proper procedure. In California, my PT orders them (using doctors credit card), I receive them from Germany and then pay doctor directly and he sends me receipt. My insurance will not pay when it is ordered like that. I need an RX from Doctor, find an in-network person to measure and order has to be placed by an in-network medical supply company. Constant jumping through hoops 😁The other concern I have with the custom garment is how long it takes to dry after washing it!!! Very frustrating!!!!

Lastly, my biggest problem is psychological. I am still very fearful of doing anything that will impact my leg negatively. I am afraid to overuse it. I know that sounds strange, but it impacts my every movement and thought.” Cindy

Thanks Cindy for the update, the psychological aspect of this surgery is something no doctor tells you about, how ever it is very real for those of us who have gone through a LNT… The waiting for the nodes to start to make a difference and the fear of damaging them, is very real and takes time to pass. I hope it helps Cindy that you are not alone in this.. Helen

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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.
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California Lymph Node Transfer..

imageThis is a post from Cindy, who wrote this via a comment but I felt there was so much useful information it needed to be shared as a post, so everyone would see it.

“December 11th 2014 I had the lymph node transplant which was the surgery my doctor thought would be most beneficial. It was a nightmare getting insurance approval. I have lymphedema in my right leg. My case is a little unusual in that I did not have cancer (though I had a radical hysterectomy because I was thought to have cancer), so there was no chemo or radiation. Unfortunately, 7 weeks post hysterectomy I had emergency surgery for an evisceration (small bowel prolapsed). Lymphedema in both legs started shortly after. My left leg responded well to treatment but not my right leg. I First met with my Lymphedema surgeon in 2012 but at that time was not ready to try a surgical approach. I felt overwhelmed with wearing compression and still having my leg swell at the end if the day. My leg consumed my ever waking moment. I was unwillingly to do anything that could possibly increase the size of my leg. I wore a 40-50 compression and slept with a Jovi at night. The emotional impact of lymphedema for me was huge. Not the cosmetic part, I learned to accept that. It was the constant fear of doing anything to make the swelling worse.

Eventually I decided to go ahead with surgery which was not as bad as expected. Pre surgery I had a lymphascintograph to show placement of nodes. I had been so fearful that the surgery would trigger the lymphedema to become out of control again. During the surgery the doctors took nodes from the left axilla and placed them in the thigh of the right leg (inner thigh not groin). Immediately after the surgery a Physiotherapist lightly wrapped my lower leg in bandages. I did not have any swelling in my lower leg. The bandages could not go higher than my knee because there couldn’t be any direct pressure on the incision, and of course there was the drain. I did have post op swelling in my right thigh and my left torso/hip area, from the donor site. I was supposed to stay in the hospital one or two nights but I developed a hematoma at the donor site (totally unpredictable) and became anaemic because of the blood loss. I spent 5 nights in the hospital while this was treated. On leaving hospital I stayed in California, in a hotel, and rented a wheelchair. For the first two weeks I was not allowed to weight bear on my right leg. Please remember I only had the LNT done. Before I left California, the two drains were removed and I was put in a compression garment (that was loose enough in the thigh…which allowed me to put a surgical pad over the incision). I started MLD on returning home and will go into a better fitting custom garment at a later stage. On 5th January I return to work (I am nervous about being on my feet all day) and wonder how this will affect my leg post surgery. My physio has to wait until 4 weeks post surgery to perform MLD directly over the incision. My leg has no bruising, post-op swelling appears to be gone. It’s hard going out-of-state for surgery, thankfully my doctor is readily available via email or phone call which helps. My California PT and my local PT will need to stay in touch to monitor my progress. Hope this answers people’s questions. Feel free to keep questions coming. I seriously mean that, I know I had a million questions and thoughts running through my head (still do!!). It is too soon to see what type of improvement I get from the surgery. The fact that my leg didn’t blow up is a very good sign and when I left California the doctor said the node already started to vascularise. I am feeling very positive about this procedure. As I have said before, leg lymphedema and arm lymphedema are different. My PT was saying (most of the time) arm lymphedema is easier to stabilise. Gravity and leg lymphedema are constantly working against each other. I look forward to hearing from anyone else who has questions or just wants to compare symptoms they might have”…… Cindy

Thanks so much for this Cindy, gives us a really good picture of the process you have been through.. I hope you will keep us posted on your progress…,Sharing really does help others.. As you say so many questions which Cindy is happy to answer.. Please leave any questions as a comment..

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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