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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Latest update from Singapore LNT & LVA

imageThis is the latest update from Thomas who had a Lymph Node transfer a few weeks ago in Singapore.. This is a link to first instalment..

https://lymphnodetransplant.wordpress.com/2014/12/13/singapore-lymph-node-transfer/

7th December 2014

I was discharged yesterday. Feels good to be back home.

I have had my measurements for compression garments taken. I am lucky that I may be able to fit into an off the shelf size. Will be back to the hospital tomorrow to try them.

I was ordered to be partial weight-bearing on my operated leg. I try to not walk too much at home, elevate the leg and continue my bed rest. I intend to so till I have my stitches removed. I didn’t dare to really bend my groin too much fearing I may squash the nodes there! Do others have the same feeling?

As far as I know that the garment needs to be re made when it gets loose. The physio here also discourage circle knit garments. I used tubigrip for many years, it does control the size a little but needs to be changed regularly.

I guess it is a long and slow process from now on to see any real results, but I do see my leg coming down as the skin is sagging from the rest. I hope with the garment it will help the skin to contract. I guess my leg is like a deflated balloon!!

11th December 2014

I just received my compression stocking yesterday from my physio, the vendor flew them in from Germany. It is a class two stocking, I was told it was not flat knit as it is not a custom-made one, but would still do the job. This is not the final garment at this stage. My stitches are still not removed so I can only wear them 3/4 up my thigh, leaving some not pulled up. I tried wearing it today again but I experience some pain and took it off. I will probably use a tubigrip or bandage instead for the time being. What brand of compression garments do others use?The physio says the size will increase when I start full daily activities and does not want me to feel disappointed, at this point they would start taking measurements on the progress.

I will have my first review with the doctor on Monday, I am eager to know what his plan is and I have lots of questions to ask! Eg. When to start full weight-bearing, start massages, etc.

26th December 2014

Merry Xmas!!!

I am glad I could get out for a Christmas gathering. I had my stitches removed on Monday. My physio told me to start full weight-bearing on my leg so that I could have my muscle working again. The overall size is smaller, compared to my first visit two weeks ago just after my discharge from hospital! However it was slightly bigger than the previous week due to increased activity. The physio told me to start increasing my activities so that they can get a realistic measurement for the final compression garments that Will be ordered next week. I hope I will be getting flat knit. Dr Terence also ordered toe caps as my current stocking is an open toe compression garment.

After a day of Christmas activities my toes swelled up, as expected, I bet my legs did too. I was reminded that my legs would swell still by the physio, so I am prepared, but I will bed rest during boxing day. The size is coming down but with some walking activities has started to increase again, all I can hope is that my transferred nodes start to improve my lymphatics.

I hope the nodes survive, I do worry about this! I intend to swim when I get better in about 6 months time, my physio says that the pool is good. I am doing deep breathing a few times a day. Dr Terence told me that the MLD can be started in a months time. So far I have been walking well without much pain but I am not doing big movements or squatting.

Indeed it is a roller coaster of emotions.

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Copyright © 2013-2014 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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Sue’s experience with Complex Bandaging..

Complex bandaging treatment for Lymphedema is time-consuming and restrictive while you have it done. Sue has had great results in combination with her Lymph Node Transfer… Some surgeons do this immediately after surgery and others later. It also depends on finding a therapist or Lymphedema clinic that can do this for you. Sue found it difficult to get this done properly after surgery but then found a new therapist and has had great results. I will be having this done in May to clear the last of the stubborn fluid from the mid leg area and to stimulate the nodes to grow and function more. I have to say it is like having a plaster cast on!!! Not funny but it does the trick. I also note Sue’s comment on how much money is spent on garments and treatment to keep the Lymphedema under control. This is something that not everyone is able to do, more financial help from health services in every country is needed. Everyone should have access to garments and treatment no matter where they live. I will add some links at the end on how to bandage..

Thanks Sue for this latest update and so glad your surgeon and Lymphedema specialist were happy!!

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My complex bandaging kit… Photo Helensamia

“Helen, I will have more to add to this but yesterday I saw my lymphedema specialist.  She was so impressed that her eyes filled with tears.  She could not have been more proud of my progress.  She had a photo in her cell phone of my leg the last time she saw me — the time she was so disappointed in its appearance.  Now that I had 8 weeks of compression wrapping and wearing a custom garment day and night, the improvement is amazing.  I see the surgeon tomorrow, and I hope that he will be just as pleased.  He, too, was disappointed with the last visit so I am hoping to make him proud, too.  I truly believe most of the improvement is from good compression wrapping.  I had compression wrapping in the past, but it was just a roll of foam, wound up the leg, nothing around the toes or the foot and two large and two small bandages.  The new therapist put foam pieces in stocking nets which I wore on my upper and lower legs, both sides, the toes were individually wrapped and there were compression pieces of foam on my foot and along side both ankles — and the foot was all wrapped up as well.  If everyone could get to a therapist is on top of lymphedema and knows the right way to wrap the leg or arm, there would be a lot greater improvement in their condition.  I never had manual lymph drainage during the 8 weeks I was wrapped and they don’t believe in the pumps.  I know how to wrap properly now so I can always wrap the leg if I notice some extra swelling.  The measurements taken yesterday confirmed that all aspects of the leg were down – as I said, I lost 58% of the fluid from the wrapping.”

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Wrapping toes too .. Photo google images

“Hi Helen – here is another update — I saw my surgeon yesterday. He was much happier with me than the last visit. I suppose it was because I finally did what he and my lymphedema doctor have been encouraging me to do — wrap the leg and then wear compression garments day and night! He did ask me whether he had done lymph node mapping before the surgery (I apparently was one of his first patients), and I told him that he had not. I think that means he could not be able to tell me whether any new ones had grown. So I will just have to guess at it! No matter, as it is what it is. If the surgery is as successful as yours, I really think they are there growing. My leg looks so much better — sure it is not a match for the other, but it’s good enough! I just know I cannot get lax about the compression garments. My insurance pays 1/2 of the cost — I just ordered one cocoa brown thigh high with toe caps and one blue with toe caps — my share of the cost $750! Now that would not be too bad if they lasted for more than six months. But I will have to replace them every six months. I wanted three stockings – black, blue and brown to match my clothes so that’s why I ordered them.

As far as the pump goes, my doctors do not like them. So I will probably stop using mine — it’s just another thing I won’t have to waste time on. When I think of all of the time and money I have spent since I got lymphedema, it makes my head spin. I don’t know if you remember this, but Betty Grable insured her legs with Lloyds of London. I think I ought to do that, too!.”… By Sue.. Thank you

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Full leg bandage .. Photo google images

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Full leg bandage.. Photo google images

This is a link to an article on Complex bandaging and videos to show you how to wrap for legs and arms..

https://lymphnodetransplant.wordpress.com/2013/04/16/complex-bandaging-includes-videos/

Copyright © 2013-2014 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://lymphnodetransplant.wordpress.com/ Thanks

Apples and Oranges…

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Google images

Over the last few weeks I have spoken to doctors and other patients who have had surgical treatments for Lymphoedema, I have come to the conclusion you cannot compare legs and arms!! In much the same way that apples and oranges are both fruits, they are different! Legs and arms are both limbs, but they are different! Legs are bigger, they do more work, gravity does not help and there is a much bigger volume of fluid to clear, the Lymphatic vessels have to grow through a larger space and bring the lymph up into the abdomen when gravity pulls it down to the ankles!!

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Google images

Prior to surgery I thought that like the lymph node Transfers to the arm I would start to see results within a few weeks, Sue and Jennifer had thought the same. We were not prepared for the very slow results or the intense Physiotherapy that we would need to see progress. Jennifer is now two years out from the Lymph node Transplant and she has a 20% reduction in the size of her leg. Scans have shown that the transferred lymph nodes are producing Lymphatic vessels so the hope is that these results will continue to improve. Sue is about 6 weeks out from her Lymph node Transfer and she is doing Manual Lymph Drainage three times a week and wearing a Reidboot or Bandages at all times. Me I await a scan on Thursday to see if there are viable Lymph nodes in the transferred tissue. Sue had seen a lady on television who had Lymph nodes transferred to her arm pit and after two weeks her arm was close to the size of her good arm. The reason I started this blog was to build awareness of Lymphoedema and to tell the story of surgical intervention from the side of the patient. Therefore I am  saying that if you have a Lymph node Transfer and/or  Lymphatic venous anastomosis to the leg, be prepared to be very very patient. There is no instant fix but change will happen gradually, the first changes are usually a softening of the leg and a better response to MLD. If you hear that someone has responded to the treatment quickly do not get disheartened as everyone is different. Liposuction to both arms and legs does see instant results but garments must be worn 24/7 as this does not cure the Lymphoedema.

I would really like it if others would allow me to post their experiences of surgery for Lymphoedema or the process of looking into it. I would like to hear about surgery for arms and legs, what led to this decision, have you had Liposuction, Lymph node transfer or Lymphatic venous anastomosis? What is it like to have Lymphoedema both secondary and primary? People sharing their stories leads to a better understanding for others and improves outcomes. I will not use real names so as to respect your privacy. I am happy to edit your post so don’t feel you have to write a perfect item for me even if you give it to me in point form that is ok… Thanks…

Please email Helen at helenbrd@bigpond.net.au

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Google images

I look forward to hearing from you…

Stepping Forward… One step at a time!

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Flowers that last till I am well..

I have not blogged for a few days, mostly because I felt that I was just standing still, not moving back or forwards but quietly healing and resting. Today however was a giant step forward, with a trip to see the doctor and at last a chance to move to the next stage. I did not sleep well last night and got up at 5am very restless and anxious about my impending doctors visit. My knee was also sore as the stitches were really starting to tighten and pull, making it very difficult and painful to bend, at 5am this morning I had had enough, I needed to see progress.

The doctor was pleased to see me, though I think he was not impressed with my straight leg walking as I had been unable to bend it much. However as soon as he removed the stitches it felt so much better and already movement was easier, it felt good to get rid of the tightness. The incision in my neck he thought was healing well, with no problems. The doctor also arranged physiotherapy for me and would see me again in three weeks, but I can contact him sooner if any problems arise.

Due to the surgery I have not been able to wear my normal compression stocking for the last three weeks but the doctor feels that by the end of week four I could start to wear these again. Eventually one hopes to no longer need compression garments but that could be months or a year down the track. At the moment it is important to get the swelling down in the leg, caused by a mix of surgery, cellulitis and Lymphoedema. I have an appointment with the physiotherapist who specialises in Lymphoedema, I am to see her next Thursday and take my compression stockings, knee highs and bandages so we can work out how best to treat this for now. My knee is bigger at the moment than usual, so may have to be remeasured for my compression stockings or bandage for a while. I will also be able to have a lymphatic massage now the infection has cleared, just six more days of antibiotics and all should be well.

There are times when I wish I had a crystal ball and could see into the future, it is so difficult not to have a sense of panic about the outcome. When you have been through cancer there are many times when you have to wait for results, I used to think a couple of days was too long, now I have to wait six months for an MRI and Lymphoscintigraph to see the results. In the meantime I have to make the best of it and hope to see some gradual improvement. I would like to get back into a pool, when it has healed more, as that has always helped me in the past. The waters natural compression as you are walking is like Manual Lymph Drainage, especially as the pool I go to has water up to the armpits the whole length. I would love to be able to go for a really long walk but that is a couple of months away I think!

I am now allowed to walk a little more, drive the car short distances but elevate leg when sitting. I think I will be able to return to work in a couple of weeks and as I only work part-time for myself I should be able to manage this!! I think some normality in my life would be good. I just need to take one step at a time till I reach my goal!! Oh, but the goal at the moment does look a long way away!!!

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More of my wonderful get well flowers and candle..