Radiation Induced Lumbar Plexopathy

Thanks fir sharing this infomation in the hope that others find answers for their unusual health problems post treatment

rectalcancermyass

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A few weeks ago someone left me a comment on Twitter after I tweeted about my balance problems. She mentioned Radiation Induced Lumbar Plexopathy, something I never heard of it, so I did some research. From what I read, I could very well have this.

My balance problems became evident after I was weaned off pain meds. Before that my doctors thought I was wobbly because of the heavy-duty pain meds I was taking. But when I was drug-free, they checked me over and all they could tell me was “I don’t know.”

I looked around the Internet to see if I could find out for myself and the only thing I came up with was… maybe the chemotherapy attacked my nervous system. I only had two doses but the first one they gave me was accidently over-dosed, so I figured that’s when the damage was done. Since I found nothing concrete and my doctors didn’t seem interested…

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Thank You

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March is drawing to a close and I would like to take the opportunity to thank everyone for making this the best Lymphedema Awareness month ever. For the first time we had World Lymphedema day, on March 6th, as everyone united to bring awareness to a disease that affects millions but is not well supported or understood.

imageBoth those with Primary and Secondary lymphedema stepped out of their comfort zones to tell their stories. What a variety of personal accounts have been shared across social media. The effect lymphedema has on people’s lives is different for each person. The severity is also different for everyone ranging from one limb to the whole body. Some people get many bouts of cellulitus and infections, others non. In some the swelling is very severe, in others manageable. The one thing that unites all Lymphedema sufferers is the need to care for their limbs 24/7 and the need for better financial, physical and mental support. The burden of care financially should not just fall to the patient, in which case many cannot afford the care that is needed.

imageBy bringing awareness we hope to educate people on the needs of those with Lymphedema. We hope to move governments to introduce legislation to cover more of the costs faced by those with lymphedema. We hope to encourage reasearch into this often misunderstood problem.

Thank you to every single person who  has been involved in building awareness of Lymphedema. The story writers, the bloggers, the Facebook pages and groups, those that shared on social media those that liked and read and talked about Lymphedema. Those who ran workshops and groups. To Kathy Bates for stepping out to be our spokes person. Everyone no matter how big or small has led to March 2016 being the best awareness month ever…

Well done all …

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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

Lymphedema Lilly brings Hope

This is the best news ever from Dr Marga re Lymph Node Transfer Surgery. At last it is no longer called Experimental and has become excepted surgery for Lymphedema … How exciting … This truly gives HOPE to those with Lymphedema .. This is the post from Lymphedema Lilly and Dr Marga …

This is a link to her FB page .
https://www.facebook.com/The-Dr-Marga-Practice-Group-275005705498/
imageVASCULARIZED LYMPH NODE TRANSFER (VLNTx) Means HOPE!
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One of the most disheartening aspects of lymphedema is that it is commonly described as a deforming, progressive and chronic medical condition for which there is NO CURE. Lymphedema sufferers often relate reaching out to health care providers for treatment and meet only with a lack of knowledge of this disorder on the part of nurses, physicians and both occupational and physical therapists. This limited access to quality care or assistance results in chronic anxiety and depression for many as it robs patients of any kind of hope to combat the long-term complications and associated disabilities of this disorder.
Lymphedema Lilly was introduced by Dr. Marga F. Massey to help disseminate the most sophisticated treatment options available for the treatment of lymphedema currently available in the United States. This year is a hallmark as microsurgical lymphatic reconstruction has been accepted by the surgical community as a reproducible, effective and safe means to bring relief to patients suffering upper and lower extremity lymphedema. Major academic institutions have added lymphatic reconstruction to their educational missions for residents and fellows as well as in specialized post-graduate educational symposiums. The American Society of Plastic Surgeons now offers lymphatic reconstruction CME Instructional Courses for experienced Plastic Surgeons to learn more of these reconstructive procedures. The battles with insurance companies for coverage are less frequent. In short, patients now have HOPE as access to health care options is easier and more accepted as the standard of care by the medical community.
VLNTx is the most sophisticated form of microsurgical lymphatic reconstruction available today in the United States. Diseased areas of a patient’s lymphatic system are reconstructed using healthy lymphatic tissue including lymph nodes transferred from a remote location elsewhere in the body. Arterial and Venous blood vessels are reconnected using the intra-operative microscope as a means to ensure survival of the transferred lymph nodes in the zone of prior injury, hence the title “Vacularized”. All of Dr. Marga’s patients are enrolled in the oldest American prospective clinical trial addressing VLNTx for treatment of extremity lymphedema to ensure validation of the technique and to track long-term complications. Dr. Marga has more than 10 years of clinical experience in the field and is a Certified Lymphedema Therapist offering care for patients in 5 Centers throughout the US.
Lymphedema Lilly Trivia: It’s rumored that Lymphedema Lilly’s eyes and smile were designed with an attempt to artistically emulate Dr. Marga’s loving approach to being Happy while living with Lymphedema.
Till Next Time, Be Health and Happy!” Dr Marga Massey

Website http://drmarga.com

Thank you to Dr Marga and all the other surgeons who have worked so hard to have this surgery excepted. Three years ago I was the first person in Australia to have this surgery for my lymphedema leg. I started this blog as there was  so little information and non at all from patients. In the last three years I have watched as things have changed, as surgery has improved, as insurance companies do not call it experimental….. All those who have Lymphedema now can have HOPE … One day there maybe a total cure… One thing is certain we are moving towards the light at the end if a very dark tunnel … Helen

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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

 

 

The unwelcome guest Part two..

imageIn Part Two Loretta tells of her time in Hospital for a Lymph Node Transfer. It did not all run smoothly but she is home and healing well now.

The unwelcome guest Part two

“In 2013 my cancer surgeon encouraged me to speak to a Plastic surgeon that was operating on people with lymphedema. I went for a consult and he said he would take lymph nodes from my neck and put them in to my ankle. I asked him how do I know I won’t get lymphedema in my neck and he said there was a chance!!! I was not happy with this answer and never went back!!! Then in June my surgeon told me about a Dr. at Sloane Kettering who was doing something new with lymphedema patients. I went to see Dr Dayan in July, he told me about the testing he did called Reverse lymph Node Mapping using lymphoscintigraphy. This new test could prevent possible Lymphedema at the donor site, by choosing nodes in areas where they are plentiful. It is also used to check where nodes need to be transferred, to improve the lymphatics. Dr. Dayan is probably the nicest individual I have ever met, he takes the time to speak with you and your family and answer all your questions. I actually went to see him twice before I made my decision. I also asked to speak to a patient that he operated on to see what they had to say. I finally I had the surgery on January 26th 2016 so I am just now recovering.

On the morning of the surgery I had lymphoscintigraphy done on my arms to choose the best nodes to use for the donor site. Dr. Dayan decided to take lymph nodes located under my right arm which were draining into my trunk. I just want to add the lymphoscintigraphy is not something to be afraid of as I had it done three times, twice in my hands and another in my hands and feet. I opted for the lidocaine injections first and all you feel is a pinch then the dye is injected and you do not feel it.

After the surgery Dr Dayan was happy with how it had gone but he told me in order to get the donor nodes they had to cut a nerve and then he sewed it together.The day after surgery the PT tried to get me out of bed but my BP dropped 50 points and I felt so sick. So they asked me to sit on the side of the bed while they remade it. Then the PN emptied my drains. She pulled on the tubing, as they all did, but very close to the donor site, instantly I was in agonising pain. My medical team was there and they tried various pain medications, thank goodness after about two hours the pain subsided. My doctor came and started me on a different medication, for nerve pain, that kept the pain controlled. He did say it could take a couple of months before it totally settled. I also got an infection at the site of the transferred nodes in my calf, so I had to start IV antibiotics. This was a worry incase this damaged the donated nodes. It took a few days to be able to get out of bed due to my blood pressure dropping but gradually I was able to manage. Those first days I felt disappointed in my self for not managing better but I forgot that this is major surgery and it effects everyone differently. I did not want to go home till I could walk and manage ok.

When I had my ovarian cancer surgery I got out of recovery at 2 am the surgeon asked my husband did he think I wanted to go home? How crazy is that they sent me home 10am that morning and later that day I was back in the ER. So this time I was in no hurry to go home.
In the US the insurance companies want you out right away, that is why I was surprised they were even paying for my surgery. Before I could go home the nurse taught me How to give myself an injection of a blood thinner, I think it is lavolax but not sure as was too nervous following instructions to see the name!!! I had to give myself injections for 30 days post surgery!!

As I started to feel better I sat on the edge of the bed good leg dangling lymph leg tucked on bed to get acclimatised to getting up. The nurse and my husband got me to stand up and then sit in a chair. I still got nauseous so they gave me Zofran to take away the nausea. About 20 minutes later the PT came and I got up and I walked/hopped about 10 feet to the hall, sat for a few minutes then walked/hopped back to my chair where I sat for 4 1/2 hours. I felt proud, it felt so good to be out of bed. My doctor came and told me I would not be going home till after the weekend but the next day they will take out the foley catheter I was happy about this but a little scared that I would have to get up and leave myself enough time to get to bathroom…… Hopefully sharing my progress report will help others.

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Eventually I got home and felt so happy to be there, I love it. I still had both drains and they would be taken out on Wednesday 2/10. I had the option of going into the Dr earlier to take out leg drain but arm drain was still producing too much? It was not worth it for me to go into NYC for one drain. I live in NJ about a 45 minute ride but I could not get to the car as my garage is down fifteen stairs and four front steps. When I came home from the hospital my husband parked in the driveway and our local rescue squad sent 2 EMT’s . They put me in a chair and carried me up and into my bedroom. So if I went into the city for one drain I would have to get the rescue squad to come twice, so it was best to wait and get two done together.

I am now walking on my leg but I am not 100% yet, still some pain and a lot of stiffness in the calf which is the site of the transferred nodes. I stopped bandaging because too much compression is not my friend it actually causes more swelling. My foot was so swollen but since I stopped bandaging it has gone back to normal. I still wear toe caps on it and have started to wear my ready wrap again with some cotton padding over the transplant site. This has only been for 2 days, I checked with doctor and therapist first and showed the difference in my foot and the improvement since I stopped bandaging. I also stopped with any compression at night. I kept waking up in pain because my foot and ankle was hurting so much and would have to take off whatever I was using for compression, I even tried my Tribute and that was too much as well. So now I happily sleep without anything but elevated my legs ( I have a bed that raises the foot and head) and have seen the swelling in my calf getting better as well as my thigh. My doctor tells me to be patient it could take up to a year or more to see any results. So time will tell, hopefully when I am at my optimum size I will be fitted with a custom stocking:)

I am happy for anyone to ask me questions and I have told Helen to share my email with people. Just send your questions as a comment and I will answer.” Loretta

Thanks once again Loretta for sharing your progress. We can never forget that this is major surgery and sometimes things do not run smoothly as Loretta found. However all those problems are now resolved and it is time to heal and have much patience…

Any information included in this blog does not replace the advice of your Lymphedema Doctor or therapist….  Helen

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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

Exercise to help your lymphatics..

From time to time I am asked by people if they can write an article for this blog, some I refuse and others I accept. This is an article about Rebounding as a way to help the lymphatics. I was once told that 15 minutes a day jumping on a mini trampoline would be great for my lymphedema. I gave it a go and was amazed that it was hard work!!  But it felt good … I am aware that some of you would not be able to do this exercise but for others it is something different to do at home. I think you can also get mini trampolines with a handle for support.

https://www.rebounderzone.com/blogs/rz-blog/112881093-10-ways-rebounding-improves-your-lymphatic-health

 

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Rebounding & your Lymph System … Health Benefits Galore!

As you may know, your lymph system plays a vital role in your body’s ability to fight disease and self-maintenance. But, unlike your circulatory system, there is no “motor” to get your lymph system revved up and your lymph moving. There are various self-care methods you can use to stimulate your lymph, including manual lymph drainage, skincare, and exercise. Exercise is extremely important, as not only does it benefit your overall health, but can help relieve some of they symptoms of lymphedema and other lymphatic disorders. If you are living with lymphedema, make your exercise time count with efficient exercises that impact your lymph system. Lymph in your body flows vertically, meaning traditional exercises such as running won’t be as effective as you would like with getting your lymph moving. Focus on vertically oriented activities that use the force of gravity, such as jumping jacks and rebounding. Rebounding is just a fancy term for bouncing on a trampoline, and it can have tremendous benefits including increasing your lymph flow and improving your overall health. In this infographic from Rebounder Zone, you can see the wide-ranging positive impact rebounding can create for your body. Don’t let a sluggish lymph system prevent you from living the active life you want and enjoying the health you deserve!
Leonard J. Parker III
Business Development Manager
Rebounder Zone
http://www.rebounderzone.com
832-356-8251

Lymphedema… The unwelcome guest that never leaves!!

imageHaving cancer and going through surgery, chemo and radiation takes its toll but the hope is that after all this life can move on. Imagine however that an unwelcome guest appears after all this, lymphedema. Lymphedema is that dreaded side effect of cancer treatment that remains as a constant reminder of what you have been through. For some people the cancer may return and treatment continues, for them Lymphedema is an added burden that requires their attention 24/7 along with on going treatment. Lymphedema if ignored will flare up and cause even bigger problems such as pain and infection. It effects self-image and impacts on ones quality of life it is also an added financial burden. Lymphedema is the unwelcome guest, post cancer, that never leaves. However we must never forget that some are born with lymphedema which impacts their entire life. However in this story the focus is on lymphedema as a side effect if cancer treatment. Loretta tells us of her experience with Lymphedema after treatment for Ovarian Cancer.

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This is Part 1 of Loretta’s story
“I was diagnosed with Ovarian cancer in March of 2011. I had gone in January to my Gynaecologist for my regular Pap Smear, I received a call to come back as it was irregular. I went back in February and the test was redone this time the results were normal. My Gyn Dr. Daria Klachko said to me she would like to do a cervical and uterine biopsy. That was done sometime in February and that too came back normal. She then told me she wanted me to go for an ultrasound, that was done in March and unfortunately that showed a mass the size of an egg on one of my ovaries. I then went for a CT scan which confirmed the results of the ultrasound. At that point Dr. Klachko referred me to a friend Dr. Mario Leitao who is a gynaecological oncologist at Sloane Kettering hospital in NY. He confirmed by worst nightmare, I had Ovarian Cancer. While we were arranging surgery I said, “please don’t let me get Lymphedema.” I was familiar with Lymphedema, as my older sister had it also from a gynaecological cancer surgery, however I did not at that time appreciate her struggle with it. In June, when I went back to Dr. Leitao, I found out I was indeed very lucky, I had stage 1A clear cell, although clear cell is very aggressive none of the 26 lymph nodes he removed showed any sign of cancer. I had a mix of feelings at this stage, relief that my cancer was caught early and was not in the nodes but some anger too that 26 nodes were removed as I was already having some signs of lymphedema. I told him I was getting some swelling in my left thigh but he attributed it to post op swelling. When I finished with my chemo the swelling was more pronounced and I was diagnosed with Lymphedema. During this time I also had genetic testing done, I tested positive for the BRACA mutation. This was done at Sloane Kettering, they told me that since both my sister’s had cancer and my late father that they had the gene mutation too.

My LE fortunately was very mild at this stage. I was fitted with a 15-20 compression stocking in January of 2012 and went for MLD on a regular basis. I decided not to go to Sloane Kettering for MLD I found a place nearby in New Jersey and a Dr. who was supposed to be a lymphedema specialist.

My husband and I decided to take a trip to France in June, unfortunately we didn’t get a direct flight and by the time I got to Paris my left leg and foot were very swollen. I was frantic, to be away from home and trying to deal with an ever-swelling leg, my low compression stockings were no help at all. I bought new sneakers and tried to elevate and rest as much as I could but I was in Paris!! Then a river cruise on the Rhone, so how much could I elevate? It was at this stage I started to realise the true effects of lymphedema. When I came back I went to the Dr. in NJ and showed her the swelling, which by that time was out of control, the only thing that helped was staying in bed off of my feet. We upped the compression but still nothing helped. This was a miserable and worrying time being unable to control the Lymphedema and the impact it was having on my life. It was at this point I called my surgeon and asked if he could get me into The Sloane Kettering Lymphedema program. At Sloane Kettering I was bandaged but didn’t do well with the compression. The first night I felt like my foot was on fire but kept the bandages on until the next day, when I took them off I had sores behind my toes. Needless to say I didn’t bandage again. However I tried a ready wrap and that worked. At this point I was hoping to find some other help for my Lymphedema as I was having such difficulty controlling it.” Loretta

Thanks Loretta for sharing with us how your lymphedema started in the second part we will hear about Lorreta’s Lymph Node Transfer and her time in hospital… Remember March is Lymphedema Awareness Month and by telling our stories we allow people to understand the impact of Lymphedema on our lives.
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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

Everything You Wanted To Know About Lymphedema But Were Afraid To Ask: An Interview With Cynthia Shechter, Breast Cancer and Lymphedema Rehabilitation Specialist

Another informative post from Carrie on her experiences with Lymphedema … Thanks for sharing

My Little Bs Have the Big C

Wow!!!!  I am humbled by the overwhelming response I received in response to yesterday’s post, Lymphedema and How It Has Changed My Life.  So many of you have shared your experience with lymphedema, whether you got it as a result of breast cancer treatment, another surgery or trauma or as a hereditary condition.  This has made me believe, even more strongly than before that we need more research, education and awareness for this disease.  What an incredible community we are creating when we share our experience.

Today, March 6, is officially World Lymphedema Day, which makes me even more thrilled to introduce to you, Cynthia Shechter of Schechter Care.  Cynthia is an OT specializing in breast cancer and lymphedema rehabilitation.  She is not only the OT that has helped me manage what I thought was a condition that would only get worse with time and could not be helped…

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Lymphedema and How It Has Changed My Life

Sharing this heart felt account of living with Lymphedema … It is so important for people to understand the impact it has on our lives … Thanks

My Little Bs Have the Big C

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It’s the side effect that’s barely mentioned.  A whisper in passing by the surgeon and radiation oncologist.  Spoken nonchalantly as if not talking about it means it won’t happen.  But many of us know that this is not the case.

Today it was announced that the U.S. Senate unanimously voted that March 6th will be World Lymphedema Day.  This landmark decision is the first step in bringing awareness to this awful condition.  I wanted to use this opportunity to not only tell you all about lymphedema but how it has impacted my life.

Lymphedema can happen to anyone who has lymph nodes removed during their mastectomy, a sentinel lymph node biopsy or radiation to the area.  I’m not even talking about those who are born with or develop the condition as part of a hereditary trait or those who get it as a result of another bodily trauma.

Lymphedema is…

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The “ayes” have it: US Senate passes World Lymphedema Day bill in unanimous vote

Best news ever….sharing this from Lymphie Life… How exciting for all those with Lymphedema … Our voice is being heard

The Lymphie Life

By USCapitol (U.S. Capitol Building) [Public domain], via Wikimedia Commons By USCapitol (U.S. Capitol Building) [Public domain], via Wikimedia Commons Amazing, wonderful, exciting, encouraging, super-great news, everybody: last night, at 6PM EST, the US Senate became the first national governing body to establish March 6th as World Lymphedema Day!

From an update by the Lymphatic Education and Research Network (LE&RN):

The US Senate has become the first national governing body to establish March 6 as World Lymphedema Day. The bill was written and presented by LE&RN, with Sen. Schumer (NY) and Sen. Grassley (IA) co-sponsoring. Sen. Mitch McConnell (KY) presented the bill in session, at which Sen. Dan Sullivan (AK) presided and where it passed unanimously.

This is a huge victory for the lymphedema community! It elevates us to the national stage, increasing our visibility and our need for more research, better insurance coverage, and accessible treatment for all those living with lymphedema. There is still a lot of work to be…

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