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Lymphedema Lymphaticovenous anastomosis (LVA) changed my life

Lymphaticovenous anastomosis (LVA) was performed on both of my legs in the summer of 2015 in Japan. The surgery changed my life tremendously for the better. I truly appreciate every person who has helped to change my life for the better. I thought it might be good idea to share my experience from a patient’s point of view for others who may be contemplating LVA or who may be suffering from lymphedema but not know anything about LVA.

 My condition

I noticed that my left leg started to swell about 8 years ago. It started from the bottom of my leg, and the condition gradually progressed toward my toes. After noticing symptoms of lymphedema, my doctor suggested I attend a seminar held by a massage therapist trained specially for lymphedema. The therapist told me that since lymphedema was incurable, I had to be really careful about what I do in my everyday life and do exactly what they told me. I tried to do everything I learned from the seminar such as wearing compression stockings, bandaging, and getting massage treatments. Unfortunately, no matter how hard I tried, my condition just got worse.

The difference between my right leg and left leg was 6.5 cm in diameter around the calf. Along with the swelling, I suffered a lot of PAIN. I wasn’t able to drive for 2 hours without taking a break to relieve the pain, and going on an 8-hour flight was torture. People could easily tell that there was something wrong with my legs.

I finally understood that lymphedema is not only incurable but it also gets worse. No doctor or therapist could do anything to heal my leg. I buried my broken hope and sadness deep in my heart and locked it away. I figured having these negative emotions didn’t help anything if the condition was incurable anyway.

All I could do was THINK about solutions on my own, OBSERVE my condition and progress, and DO what I could do to compress my legs effectively and keep my condition from worsening. Therapists gave me suggestions on how to deal with my condition but I still had to THINK, because they were everyday things. These processes became part of my life.

Found a new treatment

One day, I was browsing the internet and looking for some new tools to support my toes because they started to swell. I came across an article about Lymphaticovenous anastomosis (LVA) and its effects.

The article shocked me. It explained that LVA is a surgical procedure performed by connecting healthy lymphatic vessels to veins located nearby, to drain excess lymphatic fluid directly into the blood circulation.

After I read the article, I went to my family doctor to find out more about the LVA and ask for his opinion. My main question was whether there were any side effects or if it would cause any stress to the body. My doctor explained how the lymphatic system and blood system works. According to his explanation, even if the surgical treatment didn’t work well, there would no substantial effects aside from small scars on my body. He suggested that undergoing the surgery might be a good idea since I was suffering from lymphedema, which is incurable. He referred me to a doctor who specializes in lymphedema and the treatment usages of massage, bandaging and compression garments. I told this doctor that I was interested in undergoing LVA, and he then referred me to a surgeon.

Process leading up to the surgery

After the first physical examination of my legs, I underwent lymphoscintigraphy to evaluate my lymphatic system.

A doctor injected a radioactive substance between my toes and the substance flowed along with my lymphatic system. If there were no obstructions, the substance was supposed to reach my heart within 20 to 30 minutes.

The results of my test were not good. The substance did not even reach my heart. My lymphatic functions were at only 10% in my left leg and 50% in my right leg. I had originally thought that there were no problems with my right leg, so I was shocked to see this result.

My surgeon explained the condition of my lymph system with the results of the lymphoscintigraphy and also described four different kinds of treatment.

1)Complex physical therapy

This therapy includes wearing compression stockings, bandaging, and undergoing massage treatment, which I had already been doing for years.

2)Surgery: Lymphaticovenous anastomosis (LVA) to create bypassesThe scar from the surgery would only be 2-3 cm and bypasses would be created right under the skin, which minimizes stress on the patient.After the surgery, compression stockings and massage treatments would be required to support the lymph system and maximize the effect of surgery.This surgery will be successful if functional lymphatic vessels are found. If there is sclerosis of the lymph vessels, the surgery cannot be performed. I learned that these sclerosis types are found in severe stages of lymphedema. This makes skin hard and results in hyperplasia.

3)Lymph node transplantation

4)Liposuction

The surgeon recommended that I undergo LVA if I wanted to. I was told that it would be better to perform the surgery on both of my legs. He told me it would be beneficial to have some bypasses on the right leg to prevent any future edema because of the 50% functionality in that leg. He also mentioned that there have been cases of patients who did not see any improvement even though the bypasses were created. Sometimes the surgeon cannot find good vessels to connect with the veins; in that case, the incision would be stitched up without creating a bypass.

Aside from the surgery, I definitely needed intensive massage treatment and compression stockings to support the flow of fluid after the surgery because of the severely decreased lymph functioning in my left leg.

Before I made my decision, the surgeon let me think about it overnight and gave me a chance to research LVA more. I went home to think and I started to feel extremely happy because of the newfound hope that I gained from my surgeon. The opportunity made me very positive and happy.

What is Lymphaticovenous anastomosis (LVA)?

When I researched LVA, I found a lot of information about it on websites and blogs that talked about the experiences had by many patients in Japan.

I was really surprised with the amount of information available on the internet. There are so many people who praise the treatment and how it improved their conditions. Some of them said they don’t need to wear compression stockings anymore.

I also found out that this procedure evolved around 2010 because of the inventions of better performing surgical tools and instruments, and the development of supermicrosurgery. The LVA procedure requires a high-power surgical microscope (with 50x magnification), super fine surgical sutures that are 1/10 the diameter of human hair, and tiny forceps to hold it. It requires ultra detailed work and specialized techniques to connect the lymph vessel (ranging from 0.2 mm to 0.8 mm) to veins. The surgeons have to be trained well to perform the surgery.

Finally, I noticed that the surgeon I was referred to was one of the pioneers in the innovation of these medical instruments and techniques. Wow.

No matter what information I found on the internet, I was pretty sure that my decision was not going to change. I would just go for it. I was pretty sure if I left my legs as it were, the edema would progress more and cause more pain and start to limit my life more. Even though it was uncertain whether there would be any improvement after the surgery because of my severe condition, I thought, “Why not take the chance?”. I thought I could live with the consequences. The next day, I made an appointment for the surgery.

The day of the surgery

The day of my surgery, I walked to the operating room with a nurse and lied down on the table. First, I underwent an examination called Indocyanine green lymphography to evaluate the flow of my lymph fluid and to find potential lymph vessels and veins. My doctor injected an indocyanine green substance around my toe, and it was very obvious that it flowed toward my heart until it reached a place where my lymph system was injured. Once the substance reached that area, it spread out radically and stayed there. My doctor explained that there was a place where the fluid is stagnant. An ultrasonography was used to find where to make the bypasses.

The surgery was performed by local anesthesia, so I was watching the whole process on a huge Panasonic monitor showing every detail of it. It took about 3 hours to finish everything. My surgeon kept conversation going with me as well as the other nurses for me to feel less stress during the procedure. They were all very nice.

It was so interesting to see every step of my surgery though the screen. Because I didn’t feel any pain, it was like watching the surgery being performed on someone else.

And OH! I was absolutely astonished with the surgeon’s outstanding performance. His skills were exceptional! I couldn’t believe how he could connect a 0.2 mm wide lymph vessel to a vein using four equally distanced stitches around the circumference!!! The performance even amazed a neurosurgeon who was observing. He said that it was great work.

My surgeon created 6 bypasses in total on both side of my legs, connecting lymph vessels ranging from 0.2 to 0.8 millimeter to veins.

A new method of massage and compression stocking

I stayed at the hospital for 5 nights to minimize any body movement. Right before my release, my surgeon referred me to a therapist for massage therapy and a compression stocking.

The massage I received was very different from what I used to receive. It seemed that they perform new methods for lymphedema patients. I did not see how the therapist massaged my leg but it worked very well. It seemed like all the remaining lymph fluid flowed into my veins through the new bypass. As a result, my leg’s swelling was relieved around the areas where there were bypasses. I still have swelling where there is no bypass. The therapist made me some assisting boots made out of urethane foam to wear at night. It is very easy to wear and works very well.

During my stay at the hospital, I already noticed the difference in my legs. The difference in the size of my legs before and after the surgery was obvious 2 weeks after. The condition became even better after the massage.

The differences before and after the surgery

It has been about 6 months since the surgery. Here is a list of the improvements so far:

1)Diameter of my legs:My legs are 6 cm smaller than before. Not many people notice my problem which makes me feel really GOOD.

2)No more pain:While I still have minimal pain where no bypasses were created, most of the pain is gone! I can sit in a car for 2 hours and I am able to sit in a place for 12 hours. I can attend 2 hour seminars, now!

3)I can walk better:I feel more balanced when I walk. Before, when I got tired, my left leg used to trip a lot because I couldn’t take proper steps with it.

4)My toenails are healthier:Before the surgery, my toenails were yellow and they were thick.

5)Finally, I feel much better knowing that there are still other options of treatments. This makes me very positive. I realized that having hope makes people happier.

I feel very fortunate that I was able to undergo this treatment and meet my surgeon. If I underwent this surgery while my system worked better, I might be cured even more than I am now. Nevertheless, my quality of life has changed in many way, and I truly appreciate the results!

There is so much information about LVA from patients of different types of lymphedema in Japan. Some say that their edema was cured almost 100% which allows the patients to not have to wear stockings or have lymph drainage. Other evidence shows that for patients who suffered from cellulitis occasionally, the cellulitis was gone for good after the surgery. It seems that the treatments differed based on the severity of the lymphedema.

I have found that there are many happy patients who have undergone surgery. And I am one of them.

Lastly, I am going to undergo another bypass surgery for areas where edema and swelling still remains. I hope it works well again.

Please leave a comment – I will gladly answer any questions!

N Nakamura

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