Lori’s story of Primary Lymphedema and treatment

imageToday Lori sent me her timeline of Living with Primary Lymphedema and the effect that it had on her life..it actually made me cry when I read how her life fell apart as the Lymphedema got worse over time. This is a very honest and open account and should be read and shared by everyone.. This is the face of Primary Lymphedema….

Lori’s Lymphedema Timeline….

“Approximately five years ago in 2007, I noticed extreme swelling in my left leg. I first sought treatment from my primary care doctor, and then was referred to a vascular physician. I underwent a CT Scan to rule out a venous clot. The vascular surgeon did not find a venous clot and sent me to another vascular specialist to try to determine the cause of my leg swelling. He performed an ultrasound and ruled out a vascular cause of the swelling, and referred me to a lymphedema specialist for what he suspected was lymphedema. I was diagnosed with lymphedema by Dr. Rockson at the Stanford Center for Lymphedema and Venous Disorders.

At the Center of Lymphedema, I was instructed in conservative treatment for lymphedema, which is very time intensive, and which I have been doing. The treatment involved the standard decongestive massage therapy with compression bandage wrapping, manual lymphatic drainage, pneumatic machine massage, and then compression garments during the day. I diligently did this for 2 years, and during that time, my leg swelling worsened to the point where I could not zip up my boots because it was so much larger despite my efforts.
I felt frustrated, and took part in their clinical trial with Keoprofen for six months. However, the medicine also didn’t help my lymphedema. During the six month trial, my leg swelling continued to overall increase! This was very discouraging.

Over the last three years, I have been wearing compression garments daily, using a gradient pneumatic sequential pump daily and wearing a night-time compression garment. In the last three years with all of these interventions, my leg swelling worsens. I can’t find a pair of shoes to fit my left foot. I had to buy two pairs of shoes, one pair a size larger to fit my left foot. A lot of my slacks didn’t fit because my left leg was too big for the left pants. My activities or rather lack of activities are dictated by my lymphedema. Forget skiing or ice skating as I couldn’t fit my foot into the boot in the winter. Exercising was always challenging with the compression garment bunching behind my knee and causing skin irritation and abrasions. Now, the throbbing and swelling and pressure precludes exercise.

My leg has really suffered in the spring and summer. It is very painful and uncomfortable with the warmer temperature when my leg swells even more. The swelling is unbearable and I minimize going outside. I try to spend my entire time inside in the air conditioning. The lymphedema has taken over my life. My whole day would be focused on what time I will wrap my leg and pump my leg as it very time-consuming, and I have had to decline normal social activities and interactions that most people take for granted.

A major concern of mine is developing a life-threatening infection. I check my skin, especially where the garments rub my skin, like around the knee and ankle. A few months ago my leg split open on its own. I noticed a trickle of blood running down my leg. This was a small cut, but it was scary for me. I worry about developing cuts, insect bites, and a horrible infection. I take a risk every time I shave my leg.

As I get older, my leg will continue to get bigger and bigger. Sometimes I wake up crying, wondering how I will deal with this the rest of my life? This disease is unforgiving and making me depressed. I can’t enjoy family functions because I can’t stand or even sit for any length of time without it starting to throb. This disease has taken over my life. And my left leg continues to get bigger, and swell, and get bigger, and swell.

In the last six months, I have been seeking treatment at Washington Hospital in Fremont, Ca. The lymphedema clinic took more measurements of my leg, and informed my that I had approximately 900 ml of fluid in my left leg. I also had a lymphoscintigraphy which revealed no lymphatic activity in my left leg! The radioactive nuclide never made it up my leg after several hours. I also had an MRI of the lymphatics which confirmed the massive edema and no lymphatic flow of my lower leg.

In September, 2012, Dr. Rockson evaluated my lymphedema and determined that my medical condition had substantially deteriorated. My profession is an elementary school teacher (2nd grade). He recommended that I undertake an indefinite leave-of- absence to restore my health because standing on my feet teaching became unbearable.

As it stands now, I can’t work and am on disability. I need to go back to work to help support my family. I’m the mother of four children and two are in college.

In early April I met Dr Vasile is a reconstructive surgeon in New York, who specializes in microsurgical lymph node flap transfer for lymphedema treatment. I chose Dr. Vasile because she works very closely with Dr. Becker, who pioneered the lymphnode transfer surgery. I had exhausted conservative therapy, and this was my chance to cure and/or halt the progression of lymphedema. There are very limited basins of lymph nodes that can be used for this surgery, and thus a very limited number of chances to get this right.

On May 29, 2013 I had my surgery. I remember waking up very happy and relieved it was over. I stayed in NYC for five days to recover and see Dr. Vasile on post-surgery day two. After surgery Dr. Vasile and Dr. Becker told me not to put any pressure on the incision site which is adjacent to my left knee, on the right side, about two up from my knee. I also have an incision under my arm (four inches) where lymphnodes were taken out. I was bandaged just up to the knee with no compression. My instructions were to STOP using the Flexitouch pump and to have manual lymph drainage with my Lymphedema therapist and keep all pressure off the incision site for one month. Dr. Becker wanted me to start swimming as soon as my incision closed and the JP drains were out. My knee began to swell like crazy and I called my doctor and asked if I could use my Tribute garment and just wrap with compression up to the knee. She agreed, and I began using the tribute nightly. I started swimming about two weeks after my surgery and felt better after being in the pool.
Last week I had my first manual lymph drainage session with my lymphedema therapist. She compared measurements to our last session which was five months ago. My calf had gone down in size, but other parts of my leg had increased. She reported her findings to Dr. Vasile who said this was perfectly normal. My therapist has told me to try treading water for 15 minute periods instead of swimming. I have been working on this for the past week, and feel better when I am in the pool and treating my leg to the natural compression of the pool. I wear my compression thigh highs from Jobst during the day.
Overall I can say the lymphnode transfer was a blessing from God. I felt that God led me to Dr. Vasile, and He guided her hands during the surgery, along with the hands of Dr. Becker, Dr. Chen and Dr. Levine. Being under general anesthesia was very scary for me, but the Lord was in control of it ALL. I give God all the glory and praise in my situation! I will be healed as much as the Lord is willing and I will be satisfied with what he has in store.” Lori

Thank you Lori for sharing your story with us… It can only help to give a voice to Primary Lymphedema and the impact it has on everyday life.

I need to add a footnote to this with regard Primary Lymphedema and surgery.. It is very important that the whole lymphatic system is checked to ensure suitability and that the removal of nodes for the transfer does not cause more problems. Lori had MRI in NYC at Weill Cornell which mapped the nodes in her body. Other than her left leg the nodes were normal so surgery could go ahead. Every person is different and in writing this blog I do not replace a medical assessment and a plan for treatment. A connection with a Lymphedema specialist or therapist is essential. Lymphedema is a serious condition which can become worse if not treated properly. Surgery is very very new and all of us that take it on are really “guinea pigs” testing the water for the future. There are no guarantees at this stage but we hope that one day it will be more main stream treatment..
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16 thoughts on “Lori’s story of Primary Lymphedema and treatment

  1. Oh my gosh, this story is so close to mine, its great to know I am not alone. My primary lymphedema started when i turned 18 back in 1988. After many doctors telling me to loose weight, numerous water pills that did not work, I was diagnosed with Lymphedema in 2006. By this time my leg has really suffered from swelling to ongoing infections. I have done the manual drainage, the compression stockings, wraps for day and night, and preventive medication, but have been told my return is so severe by the therapist. I have been on disability a little over two years and continue to be hospitalized approximately every 3 months with infection. Is there any support groups that I can attend. I too have watched not just my life change but my children’s as well. Thank you again for telling your story which sounds just like mine

    • Where abouts do you live re support groups.. We try to stay connected re the Internet.. It is good to share stories so that people do not feel alone.. FB also has some pages where you can connect with others re information etc.. I can pass these on to you if you like..

    • Dear Karen,
      I am the mother of a 25-yr-old daughter who was diagnosed with lymphedema 6 years ago. Your story and Lori’s story is her story. The despondence; the despair; the lack of hope! The takeover of one’s existence by the time-consuming and hardly effective measures now in existence! Would that this new surgical procedure be perfected to a state that it can benefit more sufferers. If you are a member of a support group which you recommend, I would appreciate receiving details. Thank you.

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  3. Dear Lori, It is hard to read your story, as I have similar diagnose. It changes your life in a very strange way. Sometimes I think it is a poisoned gift: you get two legs, but in the end you are told you can not use them in a normal way. Every decision during the day is in favor of your legs…to try and keep them as healthy as possible. It is very strange, you end up from being a ‘normal’ person to someone with a dissabillity and this from one day to another. I hope stories like this can wake up the sleeping doctors: for too long this disease was left out of research,… But it can happen to anyone of us, without a proper reason.
    I hope I can manage to keep mine under control, until, hopefully one day they will find a cure. Please know, although I never met someone or saw someone with this problem, there are many like ‘us’. And internet is good to bring us together, like Helen’s blog. I wish you all the best with your recovery. I saw good results before, I am still holding back because apparently I have less nodes everywhere and I am so afraid of getting le at donor site but one day I will have to make a decision. But I am sure it will work out for you, you are in good hands.

    • Thank you… All we can do is spread the word so that there is a better understanding in the medical world and more research… We need more than just maintenance …. Helen

  4. Thankyou for sharing your story.
    My 16 year old daughter was diagnosed with primary lymphedema 2 years ago. We were horrified when we learnt the treatment consisted of bandages and stockings.[when will the skinny jean craze finish!!!] We took our daughter to Italy for microsurgery last October. We have not ,as yet had her tested to see if the procedure was successful. Although her leg has not got smaller, it is in good condition so we are hopeful. The professor in Italy has also prescribed her to have penicilen injections every two weeks to prevent any infections. The doctors over hear say there is no problems in long term use of penicilen .
    Thanks so much for this blog. It is so helpful and you do suddenly realize you’re not alone.

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  6. A heart breaking story but with a happy ending. I am sure there is an updated one to this that I will find and I hope the surgery has been a great success. It fills me with so much hope that this surgery can – in some cases – be carried out on Primary sufferers. It makes me feel so positive about my 2 year old daughter’s future.

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