Update from Cindy..

Just received this update from Cindy who is two years post Lymph node transfer with Dr Graznow …going well but always have to be vigilant for any issues … it is about gauging what works best … however not having to wear compression all the time is great… LNT will continue to improve too ..

“This is long overdue. December 11, 2016 was my 2 year anniversary for the VLNT. I am pleased to report that my leg size continued to stay small and I spent a lot of time out of my garment. I was beginning to hope the Lymphedema was gone. All that changed when I put a pair of socks on to wear with my boots. The socks were crew socks so the elastic was around my calf. While at work I decided to check and see how my leg was handling the elastic. I was horrified to see the swelling (and pitting) right above the sock. I ran home during lunch and put my garment on. Next day it looked good and I continued to not wear my day garment. Overtime, I realized I could feel my calf getting bigger during the day. It was slowly getting larger and heavier. I am back wearing my day garment, using the Jovi at night and receiving MLD twice a week. My leg looks and feels great again. I’m fairly certain I will be able to go without my day garment again. I don’t want to rush it. I waited an entire year post VLNT to experiment with not wearing my garment. Think I will give it a month before I try again. I’m grateful for all those days without my garment. I now realize I can have nothing on my leg that restricts circulation.

Wishing everyone a happy and HEALTHY 2017!!” From Cindy

Please everyone remember that March 6th is world Lymphedema Day

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Copyright © 2013-2017 by Helensamia. All rights Reserved.

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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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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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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

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One year after LNT …. Cindy

imageCindy had a great Christmas celebration one year after her LNT…

“I attended the party and did not wear any compression. I’m attaching 2 photos.  I also wore heels. It felt wonderful to feel the fabric of my clothing against my leg!! Polished my nails and put on a pair of heels. When I arrived home I had no visible swelling. Yay!!! The next day I immediately got into my compression again. My husband suggested I not wear the compression and see what happens. I can’t do that, I’ve gone through too much to get where I am today. Instead, I will periodically go with out compression. I think my leg looks great and it feels great too. Since having my surgery a year ago, I wear compression every day. I do not wear any compression when I go to bed. The only other significant change I made is that I dropped 7-10lbs before having the LVNT and have kept that weight off.” From Cindy

Thanks for sharing Cindy and for all the questions you answer and help you give others, have a great Christmas and New Year .. Helen

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Cindy’s update on the funding issues for those with Lymphoedema

imageAlways great to hear from Cindy and how she is progressing, she is also great at responding to people’s questions and staying in touch with everyone. This is a link to one of Cindy’s previous post https://lymphnodetransplant.wordpress.com/2015/08/06/cindy-8-months-post-surgery-with-dr-granzow/

In her latest update she despairs of the  system that does not allow her to claim for the stockings she needs. Insurance for the treatment, care, support and garments seems to be lacking world-wide for Lymphedema. How has it been for all of you with cover for your lymphedema? In Australia without private cover there is little help from Medicare. Even with private cover there is a gap in cost and what the patient pays.

Cindy says …. “I am happy to report my leg has remained small, feels soft, has more flexibility and looks good. Though, I still wear compression during the day. I must remind myself that my surgery didn’t cure my lymphedema, it improved the appearance and overall health of my leg. I have a Christmas party to attend and will go without compression for a few hours. I will post an update after the party. Even if my leg swells a little, I am confident elevation with bring it back down. Nonetheless, it is a little daunting to think about not wearing compression!

I am replacing my garments every 3 months and am paying out-of-pocket. I have insurance that will cover them, but am unable to find a local medical supply company to order them. It was just brought to my attention, that the company I deal with has an exclusive agreement with a manufacturer, they will only sell their products. So, I am on my own when it comes to buying my Elvarex. I cannot put into words how angry I am over this. I find a garment that works for me and even though my insurance will cover it, there is no 3rd party to order it for me. Guess there is politics involved when it comes to lymphedema too. Everything about this wrong! There are few local services available for treatment of lymphedema, the ones that are here either don’t take certain insurances or choose to work exclusively with one company. I do not understand why everyone cannot work together when it comes to treating and managing lymphedema. Bless all of those involved in surgical, pharmaceutical and stem cell research and/or treatments for lymphedema. Bless all those PTs, OTs and others that help us manage our lymphedema. Shame on all of you out there (insurance companies, DME supply companies, some doctors, etc) who block our access to the treatment we need.

I will update after my evening out with no compression! :)”

Thanks Cindy for your update, if anyone has questions for Cindy please add them as a comment…

In America the Lymphedema treatment Act  is fighting for better cover for lymphedema .. http://lymphedematreatmentact.org

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In Australia we have Lymphoedema action Alliance.
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In England the Lymphoedema Support Network 

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Please add in the comments any other groups who are fighting for recognition for those with Lymphoedema. We deserve better coverage from our government health funds. This coverage should be for those who have Secondary and Primary Lymphoedema world-wide.. We need far better funding than we have at this time …

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

Kim’s surgery for Primary Lymphedema and Chylothorax

imageKim made contact via this blog a few weeks ago, she was looking for some help from myself and others, she wrote
“I developed primary lymphedema in my left leg and abdomen a year and a half ago. I also developed a chylothorax https://en.m.wikipedia.org/wiki/Chylothorax and have fluid drained twice from the lining of my lung. A doctor at UPenn Hospital Center is working with me to do a lymphscintigrapy. I have read that lymphatic transplants don’t work well for people with my history (Late onset Primary LE). I am 60 and in very good health otherwise. This has come out of the blue.”

We were able to answer some of her questions about our own experiences with surgery, testing, various doctors and hospitals, plus expectations pre and post surgery. Kim has now reached the next stage in her treatment to repair the Chylothorax and help the primary Lymphedema. Unlike secondary Lymphedema, caused by cancer treatment, we do not hear so much about Primary Lymphedema. Often people have difficulty finding a diagnosis or a doctor who understands Lymphedema and its impact on the body. I am  very pleased that Kim is sharing her experince with us but sorry that this should happen to her. Today Kim wrote..

“It’s only because of the encouragement from people on this site that I have chased down the people and institutions that might be able to help me. I am 60. My lymphatics are apparently just failing, Primary LE Tarda. Since this began in Spring 2014 with swelling in my leg, it progressed quickly over the summer. Bandaging, MLD, and a flexitouch pump are the main lines of therapy. But now I have abdominal ascites, and have had my chest drained four times since June. They take out a little over two liters each time and of course always test it. The lymphangography I had last month did not produce many good images, because of fluid in my chest. My thoracic duct up near my collar bone was shown to be normally shaped but did not have a strong clear image indicating that it is probably not conducting fluid well. I went home and had my chest drained again then returned this past Monday for a lymphscintigraphy. They used diabetic needles and it was not as dreadful as I had been anticipating. Also 8 mgs of valium orally ahead of time was a good idea!

Those images showed my left (worst) leg has one main duct that is carrying fluid, although not well, it stops at the knee, then nothing above the knee. The right leg which has begun to swell this summer, has 4 good lymph channels that look like a 4 lane highway except at mid calf, where they all look torturously varicosed, then straightens out and the lymph channels run well up through my abdomen.

So the plan is three fold. Insert a a shunt(tube) from my abdomen through my chest and attach to the subclavian vein. It has a small pump that I will use to activate the draining into the vein to remove fluid. Its very much like a Denver Shunt that is used for people with kidney and or liver failure. Soooo thankful this is not the problem I face

Second part is to have a thoracic surgeon perform a pleurodesis on my left lung. They use surgical talc to create a scarred area that causes the lung to adhere to the chest wall, eliminating the space where the chyle likes to hid in my chest. They have done this procedure for years for people with pleural efusions caused by lung or ovarian cancers or lymphomas. Once again I have to say….SOOOO thankful this is not the problem I have.

And third, here is where I am feeling some anxiety and maybe a little premature disappointment. I will meet with doctor at UPENN who does lymphovenous bypass microsurgery. I hope there is enough patency in the one good lymph channel that he will be ale to create a working anastomosis or two or three… Because my lymphatic failure is diffused I am not a true candidate for LNT, so the bypass is my best chance.”

Thanks so much Kim for sharing and we wish you well while you have this surgery. I hope you will let us know of your progress in the hope of helping others with similar problems.

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Kim at her son’s graduation

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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Some questions to help Lisa pre LNT

imageLisa sent me an email prior to her LNT…. As you can see she would like to hear how people are progressing, plus any advice for before and after surgery. What we all need to remember is that everyone is different having this surgery, the condition and size of the leg or arm, plus general health. This makes it hard to compare progress, as some will respond more than others plus some quicker than others. Always remember to ask lots of questions and comply with pre and post surgery protocols for the best results. Also each surgeon is different in what his protocols are, some are very strict and some not so much. The biggest thing to remember is you need patience, this is not an instant fix and it can take up to a year to even see small changes.

If you have advice for Lisa please use the comments to pass on your support to her. We would all love to hear how some of you are going who had the surgery in the last two years. How is everyone progressing? What is the best advice you would give someone pre surgery and post surgery?

Look forward to hearing from everyone… Helen

“My name is Lisa and I live in Dallas, TX. I am having the lymph node transfer at the end of the month at MD Anderson with Dr. Alexander Nguyen.

How are you doing since your surgery? Are you still feeling good about your surgery? Is there anything you wish you would have done before or after the surgery that you didn’t?

Just a little background. I had cervical cancer in 2002. Had a hysterectomy but no radiation or chemo thank goodness. I developed lymphedema though in my left leg in 2008.

In 2013, I had the lymphatic venous bypass surgery at MD Anderson with Dr. Roman Skoracki and was pleased with the results but wanted more! Dr. Skoracki has since left MD Anderson to head up the lymphedema program at the Ohio State University hospital. I loved Dr. Skoracki and highly recommend him to anyone in that area…in case want to put him in your blog. I was originally scheduled with Dr. Chang but he moved to Chicago right before my surgery.

Now I’m with Dr. Nguyen and I really like him as well and am scheduled for the transfer on 9/29. At my last check up in April of this year, I told Dr. N I wanted to try more of the bypass surgery. He told me I would get the best results with the lymph node transfer. Actually, Dr. Chang, Dr. Skoracki and Dr. Nguyen have all told me I would get the best results with the transfer but I was to chicken the first time 🙂 So I have decided to go for it but I’m nervous, scared and excited and hopeful all at the same time.

Dr. Nguyen is taking the lymph node from my stomach and either transplanting at the groin or calf, depending on where I need it. I will have a drain for several weeks. Did you have any drains? If so, anything I need to prepare for with those?

I would love to hear any suggestions and recommendations about preparing for the surgery–I’m following the blog as well.” Lisa

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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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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

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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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Liz… Five weeks post op…..

imageGood morning everyone,
This is week 5 post op from Dr. Chang– I will be going for re-measurement of my left leg this week and I was told that prior to going for re-measurement, I should make the leg be as small as possible, so that I can get the max amount of support from the new Elvarex for which they are measuring me. The therapist told me to make sure the night before going I use the flexi-touch, then put on the quilted night-time garment on and on top of the quilted garment, wrap the comprilan wrap around the quilted garment…..I should go to her the first thing the next morning while I still have the comprilan wrap on so that I get measured at my lowest possible measurement and in this way, give full support to those new lymph nodes which are growing…..Wow–I guess they know what they are talking about..I even passed that by Dr. Chang’s therapist, Betsy.
By the way, I got my estimation of benefits, (EOB) 2 days ago for the cost of the surgery…anyone have any guesses on the cost of this surgery??? Thank God for insurance…
That is my plan for this week–the hottest days of the summer -in the mid 90’s..AND I have jury duty on Thursday—lol–keep on keeping on….Liz

Thanks for your latest update Liz.. It is great to hear your step by step progress… Thanks Helen