Four year on….

imageToday is world Lymphedema day….March 6th… four years ago I started this blog to write about my Lymph node transfer surgery, as I could find nothing from a patients point of view. Four years later there are Facebook groups, websites and people on Instagram sharing there stories of surgery to help lymphedema. It is no longer seen as experimental and I believe there are improvements in results all the time. Lately some surgeons are using various combination of Lymph node transfer, (LNT) lymphatic liposuction, Suction assisted protein lipectomy (SAPL) and Lymphatic vascular anastomosis (LVA)… we are still waiting to see long-term results of this combination but it is exciting news.

https://stanfordhealthcare.org/medical-conditions/blood-heart-circulation/lymphedema/treatments/surgical-treatments.html

http://www.cancercenter.com/treatments/lymphedema-surgical-options/

https://lymphedemasurgeon.com/suction-assisted-protein-lipectomy-sapl

I am still waiting for someone to be able to throw away their compression after surgery but for sure it helps the limb. In my case no more infections, my leg remains soft and responds very well to compression plus I have days with no compression and it stays ok… Due to other health issues I was unable to have more surgery plus due to these health issues I am now a paraplegic and use a wheelchair, this is not helpful when you have lymphedema. I feel sure that if I was still able to walk, use a pool and exercise my results from surgery would be even better. https://lifeinawheelchairblog.wordpress.com/about/

We are also seeing more research into various other treatments for Lymphedema such as medications and artificial lymph vessels. We need as much research as possible so that we can see advances in a cure for Lymphedema. Lets hope that in the next four years we can see this happen…We need a cure for Lymphedema ….

Although I do not post very often on this site anymore it is always monitored and questions answered.. I love to share people’s stories so we may help each other…

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Copyright © 2013-2017 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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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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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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Update for Sometimes Lymphedema just feels Awful

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The previous post “Sometimes Lymphedema Just Feels Awful” was originally posted in September 2013. Jennifer has now sent an update and it is great to see that life can improve due to the new surgical procedures.

Jennifer says…

“I’ve since had 2 lymph node transfers, one to the groin area, then 2 years later area a 2nd one to the inside thigh area. My progress since that last writing has been measurable. I am so much better off than I was before. I don’t feel pain and pressure any more, I’ve lost a few centimeters in circumstance as measured against the ‘good’ leg, and I have no limitations in terms of physical activity.
I ride my bike in the heat and humidity of summer and have no worsening of my edema. I can get through a long day, at the office, running errands, working out, etc., and still be okay at the end of the day. I can take trips, even longer flights with minimal issues of extra swelling. In fact, we got stranded in Chicago on a return from a getaway to Arizona, and sat in the plane for 4 hours, cramped in our what seems like ever shrinking seats and leg room, and had no problems. I am not ‘cured’ by any stretch of the imagination. I still have to wear compression stockings, still the same strength 30/40 and wear a night wrap. I’ve not been able to go without them even for a day so far. It’s been over 4 years since the 1st surgery and 2 years since the 2nd surgery.
I am talking to Dr. David Chang at the University of Chicago about a LVA Lymph-Venous Anastomosis to see about relieving the fluid in the calf and knee area, that are still problematic . He said I was a good candidate.
The procedure would take 4 hours, where a total of 4 incisions would be made to make those connections along the leg. They are very small incisions, less than an 1 inch, and connect a lymph vessel branch to a vein. Though I’ve read that patients have been able to get rid of their compression stockings after this procedure, Dr. Chang stayed neutral on the subject. It really does depend on the individual’s situation. Dr. Chang is only 1 of a handful of surgeons in the U.S. that do this type of procedure. He learned the technique from Dr. Isao Koshima in Japan.
So, I am very near a decision to go ahead with this procedure. I will keep you all posted!”

Thanks Jennifer for your latest update and I look forward to on going news.. Helen

Other posts from Jennifer

https://lymphnodetransplant.wordpress.com/2013/06/04/exciting-news-from-new-york-nodes-are-growing/

https://lymphnodetransplant.wordpress.com/2014/03/20/news-from-jennifer-march-2014/

https://lymphnodetransplant.wordpress.com/2013/05/07/two-years-after-lymph-node-transfer-in-new-york/

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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

 

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.
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://lifeinawheelchairblog.wordpress.com
Thanks

A Catch up

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Just a quick catch up to show you my legs early in the morning … The left leg had a lymph node transfer 2 years and 8 months ago from neck to knee.. As you see the calf ankle and foot are looking good in the morning and yesterday I did not wear a compression stocking. However due to my “Life in a Wheelchair” https://lifeinawheelchairblog.wordpress.com/about/ by the end of the day my ankles and feet swell because of all the sitting!! My Lymphoedema leg is worse but fortunatly they do go down over night. I sometimes feel quite sad that having gone through everything to try to improve my lymphoedema that another health problem, lumbar plexopathy,  comes along to make things difficult. I am quite sure that had I not been in a wheelchair this surgery would have been a great success, in fact I do believe that without it my leg would be far far worse sitting all day. One thing I looked forward to after my LNT was to wear some fancy shoes but other than first thing in the morning my feet do not look good in sandles or little danty shoes!! How ever I found these little ankle boots that buckle up from top to bottom and stop the swelling.image

 

This is also an adaptation for my legs being paralysed. During the winter I love to wear boots but I had not realized that my toes were curled under, as I put them on, causing a pressure sore. These little ankle boots ensure that does not happen as they open all the way to the bottom and I can make sure my toes are straight. So if nothing else I am learning to adapt and find ways that help my Lymphoedema even though I am in a wheelchair. I also elevate as often as possible, move my feet and ankles by rotating them with my hands, also bending my knees and I never forget to do some deep breathing, anything that helps!!

Today I got a call from the physiotherapy department at the local hospital for assessment. I hope that they will not only give me exercises to strengthen my upper body but also those that help the lymphatics. Today will also be an indoors day, as it is 38C, as we all know that does not help lymphedema.

How are you all progressing? Do you have a “catch up” for every one? Please add as a comment or email me so I can create a post for everyone to share helenbrd@bigpond.net.au

Happy Thanksgiving to all of you celebrating..image

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Cindy’s update re measurements…

imageThis is an update from Cindy to make it clear how much work is needed both pre and post surgery to support the nodes while they grow. The measurements start from two years prior to surgery.

“I don’t want there to be any confusion over my leg volume and for anyone to think the size of my leg changed overnight, it didn’t! For eleven months before surgery I was diligent in getting my leg ready, compression 24/7, using my pump, MLD 3 times a week and I lost approximately 10 pounds in weight. In January 2014, I weighed 123-127(pounds), today I weigh around 115-117 (I’m 5’4″).

We do not have LDex readings, everything is done by measurements.
In June 2012, my leg volume was 9347, the volume of oedema was 674.
In January 2014, leg volume was 9766, volume of oedema was 1056.
On December 9, 2014 leg volume was 7801, volume of oedema was 220.
On August 4, 2015 leg volume was 7702, volume of oedema was 34. I’m reading all of this off a spreadsheet used by the PT in California.

My surgery date was 11th December 2014. As you can see from my numbers, I devoted all my time and energy to getting my leg as small as possible prior to having the procedure done. There is no way I would have been able to devote that much time to my leg on a permanent basis. Since having the surgery, I no longer need to do all of that. Though, I do wear compression during the day, MLD once or twice a week. Some weeks I don’t get any MLD treatments (either my therapist is away or I’m away)..It’s so important that people don’t look at this procedure as a miracle cure. Anyone who is thinking of having the surgery done, should know there is a lot of work to be done on their part, it’s not just the surgeon. Compliance is mandatory! ….. over the next few years I hope to see more improvement as the nodes grow. Slow and steady wins the race..” Cindy

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

Liz, four weeks and counting down to the first year!!

imageAn update from Liz… Love to read about her progress…

“We are now into the very end of week 3–This Friday makes it 4 weeks since the surgery for LNT and LVB with Dr. Chang. The good news is the ‘wraps are off’–YAH–now I am back to wearing the Elvarex during the daytime and under my workout tights to the gym. I will also wear the Elvarex to work under my scrub pants. I have seen the LE therapist here in CT and she did the MLD (also called the Complete Decongestion Therapy) on Tuesday of this week. That felt wonderful.Tomorrow with will be my first day back to the gym in 4 weeks.

I have been in touch with Lisa, RN at Dr. Chang’s office to ask a few questions and I have also sent emails to the LE therapist who works with Dr. Chang. I just needed a few things clarified. They did get back to me quickly. I should not be expecting a miracle overnight-within the year there will be changes and a reduction in volume. At least I have something to look forward to. All incisions have healed-I use the flexi touch apparatus at night and then I wear the quilted night-time garment to bed. When I wake up in the morning, the leg is soft. I then apply the Elvarex again and go about my day. I know I can not obsess about this. I have to let my body just do “it’s thing”–whatever that may be. I know in my heart I have done all there is to do for the LE and now it’s time to let my body take over and grow the ‘long roots of the lymph nodes’–lol-You have to have fun with this once in a while…On the discharge instructions it is stated that in a couple of weeks, I should get re-measured for new elvarex but I really don’t think I need to–the same size Elvarex I wore before my surgery are the same ones I am wearing now–they are still as difficult to get on now as they were then. I sit on the floor with my purple Playtex gloves/turn on the fan/ and sweat as I struggle to pull them up and fit them into the groin crevice!! OMG that was descriptive!!LOL. I’ll figure it out as I go and I always know I have a fabulous back up system when I need one. Someone out there from this blog will have an answer if I need one. You are all very warm, sharing, caring, people with a wealth of knowledge to share.
Tomorrow, I’m hoping the gym feels wonderful ….. My husband tells me to come to the pool with him (a community pool) but I’m not comfortable yet–eventually I will. Here is my one question–what brand of compression panty hose do you wear that can supply you with the same compression as the Elvarex? When I do wear panty hose, Jobst, which I seldom do because they eventually bunch around my ankle/knee/ groin, and I think they are doing more harm than good. I was wondering if anyone else had any ideas about a different brand other than JOBST medical compression?? Thank you-hope to hear soon–Liz”

Thanks for keeping us in the loop, great patience is needed now till there are signs of change… A softening of the leg seems to be the first change… Helen

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Liz.. Two weeks post surgery … Dr Chang

The latest update from Liz….

“I am now 2 weeks and 2 days post surgery and Dr. Chang denied my email request to go to the gym!!!—Oh well-I had to try—I am allowed to go for a 2 mile walk and “build up to a 4 mile walk” but no gym yet–I have told him that the day I was discharged from the hospital my husband and I went into Chicago and walked at least 5 miles (I wore a pedometer)–it was a casual 5 miles but it was still 5 miles. Hey, I have to listen to him. I really respect his professionalism/ability and I believe I can be and want to be the poster child for LE. I pray every day for the best possible outcome for all of us and LE relief for all of my new-found friends on this blog.
The golf ball size swelling I had at the base of my neck where lymph nodes were removed has decreased in size and for that I am very grateful. It was a small accumulation of fluid which was reabsorbed into my own blood stream without any intervention at all– just patience. Every day is a new beginning for all of us including my lymph nodes–lol–Just like I talk to my beautiful blue hydrangea which have decided to bloom this year because we have had some rain, I also talk to my new lymph nodes which I hope are growing big and strong in my groin….God, I sound crazy but I’m just really excited!! I am hoping to generate excitement and proactive behavior in everyone who has LE–we are at the dawning of a new frontier for LE care..More providers are hearing of the procedures being performed–More insurance companies are approving of the procedures. We are a voice–I know this will happen in our lifetime! God bless everyone and keep hanging on.” Liz

Thanks Liz as always for keeping us updated and your resonses to others questions.. It is a great resource for others.. Helen…

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