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

The leg is getting smaller!!

image

On Friday I went for my 18 month post Lymph Node Transfer surgery check up. I am part of a research program here in Sydney. I will have follow-up for at least two years so that the doctors here can make decisions on future LNT surgery. There is a definite opinion that LNT surgery does not work if there is fibrous tissue present, as the new nodes cannot break this down, but can clear fluid and protect against infections. Therefore it is very important for the doctors to decided who is suited for LNT and who is best suited for Lymphatic Liposuction surgery. From this view point, at this time, at Macquarie Uni Hospital they are performing more Lymphatic Liposuction than LNT surgery. There is talk of maybe doing a LNT on these liposuction patients in the future, but so far this has not happened. The hope would be that the LNT would help post Liposuction and stop the limb swelling again. At this time after Lymphatic liposuction compression garments need to be worn 24/7 otherwise the arm or leg will swell. Lymphatic Liposuction is different to the liposuction for weight loss as care is taken to preserve  the existing lymphatics. http://www.ilfconference.org/fibro-lipo-lympho-aspiration-flla-a-lymph-vessel-sparing-procedure-lvsp-for-advanced-stages-of-lymphedema/

So back to my appointment and measurements which have reduced since my visit in March 2014. One of the measurements that is used is the L-Dex reading. http://international.l-dex.com/what-is-l-dex/ This compares the good and bad leg and shows how much fluid is present in the LE leg in comparison to the good leg. In March my reading was 7.1 then June 5.1 and now it is down to 4.5 which is within normal range. This is very exciting as there seems to be a gradual improvement each visit. The doctor also felt the area at the back of my lower thigh had softened a lot, with the help of three weeks compression bandaging, MLD and Compression Garments. I have also had no infections since the surgery 18 months ago so that is a huge plus for me. I am back in a pool without fear if infection which I am very happy about. If this surgery keeps my leg in the best state possible then that is a big improvement, as my fear was always that it could get worse and worse.

I have not been writing so many updates on my own progress as there has been little to say!!! It is a slow and steady reduction which takes lots of patience!!  Will I ever not wear compression?? Only time will tell… Next appointment will be March 2015, my two-year anniversary. I will be having an MRI and Ultrasound done then but I declined another Lymphasyntagraph!! No more injections between toes needed!!

If anyone else has an update to share then send this news via email to helenbrd@bigpond.net.au and I will create a post… As always sharing helps everyone… Helen

image

Story in pictures.. Building awareness..

Apologies for my lack of updates!! I have been very busy setting up my twitter account and working on my Facebook page in the hope of spreading the word about Lymphoedema. Cyberspace gives a world-wide canvas to  work on and every person who reads, shares, likes and now twitters helps to educate and teach others. Often those of us with lymphedema feel we are the only people who know about it!!! We all have stories of misdiagnosis, lack of treatment and ignorance within the medical world. Often we find out about treatment and care for ourselves or via others who have lymphoedema. We are the best at supporting and understanding each other. Everyone who reads this can help to build awareness by emailing to friends, reblogging, following my Twitter or Facebook page… Both of which have links by scrolling to the end of these posts.. Share and like… Together we can make a difference.. 😃😃
image

The other part of this post is to tell a story in pictures of my three weeks spent having complex bandaging. At the end of the three weeks my L-Dex reading was down to 5.1… The best it has ever been for the past 12 years. My leg responded very well to the MLD and bandaging to the extent that it looks as if the transferred nodes are starting to really help the lymphatics in my leg. One problem area was the fibrous tissue at the back and side of the thigh. This we know cannot be helped by the Lymph node Transfer which will only help move the fluid. Three weeks of MLD, bandaging and the use of laser has softened this area so now there is more chance of it shifting. I have also been measure for a new compression stocking. Previously I have worn a circle knit stocking but the therapists at Mt Wilga prefer the flat knit garments which have a seam up the back and are quite thick. This was the type of garment I had 12 years ago but i did not find them comfortable as I had an up to the waist garment. However this new garment is much softer and feels very comfortable. The decision was made to order a custom-made Elvarex by Jobst. The off the shelf garments are now not the right size as the shape of my leg has changed, lower leg almost the same as good leg but from just below knee upwards still quite swollen. So here is the story of my three weeks in pictures.

First week you can see how swollen the knee area is and middle of leg

First week you can see how swollen the knee area is and thigh

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Taking the bandages off each day ... Starting to see improvements

Taking the bandages off each day … Starting to see improvements

A chart of progress measurements

A chart of progress measurements

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Elvarex flat knit stocking, black as so over beige!!! Happy with results

Elvarex flat knit stocking, black as so over beige!!! Happy with results

So where am I at now? Well the leg is still reducing but I still need at this stage to wear a compression stocking. July 4th I have another follow-up appointment with my surgeon. More photos taken more measurements and progress report. I am still part of the research program so will be monitored for at least two years. I think after fifteen months I am starting to see progress… Not a cure yet but progress in the right direction. It shows that time is needed and a lot of patience to see results. In six weeks I return to Mt Wilga for a review of my stocking and how it is fitting and also another measure in the hope there is more reduction.

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

Precautions to lower the risk of Lymphedema after cancer treatment.

image

http://www.cancer.org/

American Cancer Society

American Cancer Society (Photo credit: Wikipedia)

During surgery for various cancers Lymph nodes may be removed and radiation given. This leaves the effected limb at risk of Lymphedema. Myself I have one leg with Lymphedema and one at risk, as Lymph nodes were removed on both sides followed by radiation. I therefore treat the at risk limb with great “respect” to protect it from Lymphedema. Once Lymphedema starts that is it, there is no going back, so if there is a way to stop it starting I encourage you to use it!! I thought this article from the American Cancer Society gave very good advice,  a great deal of which is important for limbs which are at risk or which have Lymphedema…taking these precautions may also stop your Lymphedema worsening.

“For people at risk of Lymphedema

At this time there are no scientific studies to show that lymphedema can be prevented. Still, most experts say following these basic steps might lower your risk of lymphedema, delay its onset, or reduce its impact.

Get regular medical check-ups.
Regular check-ups should include screening for lymphedema. If you’ve been recording measurements of the affected part of your body, this may be part of the check-up. Talk to your health care team about how often you should be checked.


Report changes.
After surgery and/or radiation, you will learn how the affected part of your body normally feels. Any changes in size, color, temperature, feeling, or skin condition should be reported to your doctor right away.
Try to get to and/or stay at a healthy weight.
We know that obese people are at higher risk for lymphedema. Talk to your health care team about what a healthy weight is for you, and get their advice on how to get to or stay at that weight.


Exercise.
It’s important to use the part of your body that’s been affected by cancer for normal, everyday activities to help you heal properly and regain strength. Using your muscles also helps the lymph fluid drain like it should.
Certain types of exercise can reduce your lymphedema risk, too, and some exercises can make lymphedema better after it starts. If you’ve had surgery or radiation treatment, ask your doctor or nurse when you can start to exercise and what type of exercises you can do. Avoiding exercise and allowing your body to get out of shape may lead to lymphedema and episodes of swelling that are sometimes called flare-ups.
But keep in mind that some kinds of exercise can increase your risk of lymphedema or make lymphedema worse if you already have it. Overuse, which can result in injury, has also been linked with the start of lymphedema in some people. Work with a well-trained fitness or health professional to design a program that’s right for you and starts at a low level of intensity and progresses slowly to avoid overuse.
Follow these tips for exercising safely:
• Use your affected body part as normally as you can. Once you are fully healed, about 4 to 6 weeks after surgery or radiation treatment, you can begin to go back to the activities you did before your surgery. But check with your doctor first.
• Exercise regularly, but try not to over-tire yourself. Before starting any exercises, talk with your doctor, nurse, or physical therapist. They can help you set goals and limits so that you can work at the level of activity that’s right for you.
• If the affected part of your body starts to ache or swell, lie down and raise it above the level of your heart.
• Avoid repetitive overuse of the affected body part. Sudden increases in how long or hard you work out might trigger or worsen lymphedema.
• Any exercise program should be started gradually, increased cautiously, and stopped if you have pain, more swelling, or other discomfort. Talk with your doctor if you have any of these problems. If they continue, ask about being referred to a lymphedema specialist.


Use of compression garments
Compression garments are fitted sleeves or stockings that can help control lymphedema. They can help prevent and reduce swelling by moving lymph fluid from the arm or leg back into the body. Careful fitting is needed and you should follow your health care professional’s advice on use and care of the garment.
Compression garments are most often used by people who already have lymphedema. But if you are at risk for lymphedema, you might want to use one to lower your risk in certain high-risk situations. For instance, lymphedema has been linked with air travel, possibly because of air pressure changes. But there are pros and cons to using a compression garment on long or frequent flights. Ask your doctor or therapist if you should be fitted for a garment to wear during air travel.
Do not use a poorly-fitting compression garment under any circumstances, as this may increase risk for lymphedema or make it worse if you already have lymphedema.
You usually do not need a compression garment to prevent lymphedema during exercise. But if you’ve noticed swelling while exercising, talk to your doctor or therapist.


Try to avoid infections, burns, and injuries.
Your body responds to infection, burn, or injury by sending extra fluid and white blood cells to the area. If lymph nodes and vessels are missing or damaged, it’s harder for your body to move this extra fluid, which can trigger or worsen lymphedema.
Some basic precautions, good hygiene and careful skin care may reduce the risk of lymphedema by helping you avoid infections, burns, and injuries. Follow these tips to help you care for the part of your body that had surgery and/or radiation:
• Keep the affected area clean. Careful skin care can help you prevent infections.
• Keep your hands, feet, and cuticles soft and moist by regularly using moisturizing lotion or cream. This will help keep your skin from chapping or cracking. Push your cuticles back with a cuticle stick while they are soft (after a bath) rather than cutting them with scissors. Try not to pick at or bite your cuticles.
• Clean and protect any openings in your skin caused by cuts, scrapes, scratches, bug bites, hangnails, or torn cuticles. See “How to care for cuts, scratches, or burns” in the section “Take care of yourself.”
• Watch for early signs of infection, like pus coming from a cut or scrape, rash, red blotches or streaks, swelling, increased heat, tenderness, chills, or fever. Call your doctor right away if you think you have an infection.
• Be extra careful when shaving, and use a clean razor on clean skin.
• Use an insect repellent to avoid bug bites when outdoors. If a bee stings you in the affected area, clean and raise the limb, put ice on the sting, and call your doctor if there are signs of infection (see above).
• Avoid activities that irritate or chap your skin.
• Protect your body, especially treated areas, from sunburn. Use a broad spectrum sunscreen that
is labeled SPF 30 or higher, and try to stay out of the sun between 10 a.m. and 4 p.m.
• Your affected limb might not sense hot or cold as well as it did in the past. Test bath water temperatures with an unaffected limb.
• Avoid extreme temperature changes, such as heat from hot tubs and saunas. If you use a heating pad or ice pack on the affected area, limit the length of time you use it until you know how your body will respond. Both heat and cold can damage tissues and can increase fluid build-up. Some doctors may advise you to stay away from all sources of extreme temperatures.
• Protect yourself against falls, fractured bones, and serious burns.


Be aware of cellulitis.
Cellulitis is an infection in the tissues just under your skin. Signs of this problem include redness, warmth, fever, pain, and flu-like symptoms. Report this urgent medical problem to your doctor right away. See the section “Take care of yourself” for ways to help prevent infection.
Cellulitis can lead to or worsen lymphedema. In fact, if it becomes a repeated problem, suppressive antibiotics may be used to keep it under control.


If your arm is affected
• Whenever possible, have your blood drawn, IVs, and shots given in your unaffected arm. Get flu shots and vaccinations in your unaffected arm or somewhere else. Let all your health care providers know that you are at risk for lymphedema.
• Wear protective gloves with sleeves when doing household chores using harsh chemical cleansers or steel wool, when gardening or doing yard work, and when working with animals that could scratch or bite.
• Wear a thimble when sewing to cut down on needle and pin pricks.
• Use oven mitts that cover your arms instead of hot pads. Be careful when frying foods, boiling liquids, and removing food from a microwave oven.
• Keep pets’ claws trimmed to avoid getting scratched.

If your legs are affected
• Always wear well-fitting, closed shoes instead of sandals or slippers. Do not go barefoot. • Keep your feet clean and dry. Wear soft protective socks (cotton or padded types).
• Dry the creases between your toes after bathing.
• Cut toenails straight across to help prevent ingrown toenails.


Try to avoid pressure or constriction.
Constriction or squeezing of the affected body part may increase the pressure in nearby blood vessels. This can lead to increased fluid and swelling (much like water building up behind a dam). Some people have linked this to the start of lymphedema. Here are some tips to help you with this:
If your arm is affected
• Wear loose jewelry, clothing, and gloves. Do not wear anything that forms a snug band around your arm or wrist. Be sure compression garments fit well and are worn properly. Clothing and compression garments should be supportive and have smooth, even compression.
• Do not use shoulder straps when carrying briefcases and purses.
• Wear a loose-fitting bra with padded straps that do not dig into your shoulder.
• Have your blood pressure taken on the unaffected arm. If both arms are affected, blood pressure can be taken on your thigh. Or, you can ask that blood pressure be measured by someone using a hand pump and stethoscope rather than using a machine; the machines often use high pressures for a longer time.
If your legs are affected
• Avoid socks, stockings, undergarments, or pants with tight elastic bands.
• Wear shoes that fit well.
• Try not to stand or sit in one place for too long (more than 30 minutes). Do not cross your legs when sitting.
• Most people with leg lymphedema benefit from wearing a compression stocking when up and walking around. A compression stocking can help squeeze the lymph fluid through the remaining vessels before it builds up. The stocking must be well fitted to apply the right pressure while avoiding too much tightness near the top of the stocking. Ask your doctor or physical therapist if you should be fitted for a compression stocking.

You can’t change the fact that you have or are at risk for lymphedema. What you can change is how you live your life – taking good care of yourself, making healthy choices, and doing what you can to make your body and your mind feel as good as possible.”

Thank you to the American Cancer Society for this information which is very helpful http://www.cancer.org/ for more information please visit their website…

image

I’m Dancing too!

Well I am still in the A team, not on the bench and not in the dressing rooms ready to go home, the coach is happy and training continues.

image

Yesterday I saw Dr Quan Ngo, for my three month post surgical check up at Macquarie University Hospital and he had the ultrasound report  from last week.

This report is for: Dr Q. Ngo
Referred By:
Dr Q. Ngo

US – LEFT KNEE 30/05/2013 Reference: 1029330

ULTRASOUND LEFT KNEE

CLINICAL HISTORY: Lymph node transfer to medial left knee in March
2013. To assess for presence/number of viable nodes.

REPORT:
High-resolution ultrasound of the left knee was performed.

There are two visible lymph nodes in the medial left knee within the
subcutaneous tissues measuring 6mm. There is marked subcutaneous
oedema.

Radiologist: Dr Y. Ong

The Dr said he did not know how many nodes were transferred, as they don’t look into the flap of transferred tissue so as not to damage the nodes, but he was happy with two. There had been a real fear that the infection may have damaged the nodes so this is fantastic news. I now feel like I have two little babies in my knee that I have to nurture and care for!!

image

Measuring board allows for accurate spacing while taking the circumference of leg or arm.. Google images

Next my measurements, but here there is a bit of a dilemma, as my pre surgery measurements have gone missing, it seems they were not entered on the computer and the hard copies have gone walk about! There has also been a change in how they take measurements, since the team visited Sweden to see the doctors there last month. On Wednesday the physio took my measurements with new spacing up the leg, inline with the new system, so they do not compare with those taken last month!! They also do not compare with the only pre surgery measurements found which were taken in 2009 at Mt Wilga Hospital. I guess that from this month we will be able to track progress again in an official way once we have a few measures done by the new system!!! On a positive note my L-Dex reading is now down to 8.4.

image

L-Dex chart…Google images

Then Dr Ngo checked my knee movements and gave me some exercises to strengthen and help with bending etc. He also took photos to compare with pre surgery and later on down the track… For sure I will not be winning the sexy legs competition!! Now when I do my MLD I am to take the hand over the new nodes to encourage them to work and to become part of their new lymphatic system. He also checked the areas that are still numb from the surgery, but these are getting much smaller as the nerves start to reconnect and heal. The numbness was great after surgery as it stopped there being any pain! There is one area that bothers me being numb and that is down the front of my leg and it affects my foot but the doctor says that this will also settle over time. These are all the little side effects that I did not know about before surgery!! The other one is the scar on my neck which has gone a bit lumpy in the past week, there seems to be a problem with the dissolving stitches and a reaction to them, which is very strange. The Dr suggested I use silicone gel which you buy as a small sheet and place over the scar. He called it the “Rolls Royce” of healing! This is supposed to induce healing and get rid of any raised areas or redness… We will see how that goes as it had been healing very well up to now. If in a month it has not settled or gets worse I am to contact the Dr. I sometimes I think these little problems are coming my way so I can write and prepare others for what is ahead, hopefully from now on it will all be plain sailing!

image

Various Lymphoscintigrams… Google images

My next visit to see Dr Ngo will be in three months on September 14th. Prior to this I am to have a lymphoscintigram to map the lymphatics and an MRI to check the fluid levels in the leg, both to compare with pre surgery scans. In the mean time I am to keep doing what I am doing! Nothing has changed so far with my “Living with Lymphoedema,” MLD, compression and Ready Wraps are all still part of my life, even though I would love to throw them all in the rubbish bin!! I hope one day in the future…….. The doctor said I am back on track after the infection and that is all I can ask at this stage…  My next goal is to build my fitness up again!

image

Time to Shrink the leg!!!

Compression decreases as you go up the leg to push fluid in lower leg upwards.

Compression decreases as you go up the leg to push fluid in lower leg upwards, eventually joining upper lymphatics and leaving the body.

Today was my first visit to the Physiotherapist who specialises in Lymphoedema, as the doctor will now allow me to wear a compression stocking or to have bandaging done. The infection now seems to be gone, I finished my antibiotics today so I can now have Manual Lymph Drainage, MLD, as there is no more fear of spreading the infection. I can hardly believe that it is a month since my surgery, that I am now back on track at last, though I would say I am about two weeks slower getting to this stage than what had been expected. I was very anxious about my appointment today as I needed to feel I was moving forward, that I was able to make some kind of progress otherwise ones brain feeds on doubts!

My physio started the session by examining both my legs, the incision in my neck, and then the knee. Were there any problems with movement of my neck and shoulders? What was the range of movement for my knee? Where was fluid collecting? Neck and shoulders were moving fine, no  problems and healing well. I can nearly bend the knee to 90 degrees, this is improving every day, it is also getting easier to get up and down the stairs each day. The major issue is the Lymphoedema and fluid retention in the leg, mainly around the knee and lower thigh but to some extent all over from the waist and down the left leg. This is due to the lack of movement for three weeks, infection and the surgery. I guess to be expected but hard to cope with……

image

Plotting history of L-Dex readings

Today we did a full set of measurements of both legs, the first since last year when being assessed for the surgery. The measurements now are not at their best but with a bit of work these will improve. The physio also did an L-dex measurement. This is done using a special machine that measures the fluid in the good and bad limb. This will give us an accurate guide re the reduction of the Lymphoedema in the left leg  post surgery. To obtain the reading an electrode is placed in the top of each foot and on my right hand, these are connected and the readings taken, it takes a couple of seconds and you feel nothing… One of the easiest tests!!!

image

Shows readings from good and bad limb..

To explain this better here are some quotes below from the L-Dex web site plus link to this info…

“The lymphedema index (L-Dex) is a measurement system used to aid in the clinical assessment of unilateral lymphedema of the arm or leg (swelling occurring in only one limb.)
ImpediMed L-Dex devices are the first cleared medical devices using low frequency impedance. They have been developed to help your doctor or physio detect the onset of lymphedema before feelings of heaviness or visible swelling occur. The devices produce a lymphedema index (or L-Dex) value that can help determine if you are building up excess fluid in your at-risk limb. The test takes only minutes to perform. It is painless and gives an immediate result.


Why Have an L-Dex Measurement?

L-Dex measurements are a quick, non-invasive and sensitive method for aiding in the clinical assessment of lymphedema of the arm or leg
L-Dex measurements can help your healthcare professional accurately monitor lymphedema whether in the early (hidden) or late stages.
L-Dex measurements made each time you see your healthcare professional can help them:
–Better clinically assess the early stages of lymphedema.
–Show you how any treatment or management is working.

How Does it Work?

The electrical signal travels through the fluid surrounding the cells which make up the muscle and tissue of the arm or leg. The amount of this fluid increases as lymphedema develops. Increased fluid means the electrical signal will travel more easily through the arm. An L-Dex device compares how easily the electrical signal travels in the unaffected versus the affected (or at-risk) arms and generates an L-Dex value from this comparison.

What Does an L-Dex Value Mean?

The L-Dex value indicates the difference in the amount of fluid in the unaffected limb versus the affected limb.
L-Dex values are displayed against a normal “healthy” range.
L-Dex values greater than 10 or an increase of 10 L-Dex units may be indicative of lymphedema.
L-Dex values indicative of lymphedema should decrease as a result of therapy.”

My L-dex reading today was 7.5 for good leg and 34 for bad leg!!! Not sounding so good but this is a measurement we can work on and reduce. For those of you who have had lymph nodes removed due to surgery this is a reading you can have done to detect if Lymphoedema is occurring in the hidden stage. On a positive note because it is a build up of fluid rather than fibrous tissue this can be reduced by the use of MLD and the compression stocking and or complex bandaging if needed.
At the end of today’s session the physio and I decided we would try to put on my existing compression stocking. We checked the measurements for ankle, calf and thigh and they were all good. Problem was no measurement for knee, however when we put it on it went over the knee well and felt quite comfortable, not sure if this is because my knee is still quite numb or it really is comfortable! Today the physio suggested leaving it on for a few hours then removing it to check knee incision is ok. Tomorrow when I put the stocking on I am to put a padded dressing over the incision, to protect it against friction from the stocking when walking, although it is looking good the area is still sensitive and needs to be treated with care. I am using pure vitamin E oil on both scars and they are healing well. I am to see the physio again next Monday and I will have another MLD and check the progress. I hope this works as otherwise I will have to have the complex bandaging and I really feel I would like to get moving more than this allows. Over the weekend I will continue self massage and exercises to help the drainage, and will wish that Monday brings positive results that the leg is shrinking!

Today was also a big mile stone as I drove my car for the first time since surgery… Yeh… Freedom!!

Starting measurement from Ankle upwards

Starting measurement from Ankle upwards.. Google images

image

Open toe thigh high compression stocking … Google images