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.
https://lymphnodetransplant.wordpress.com/ Thanks

Doctors visit… One year after Lymph Node Transfer

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centennial Park Sydney

The true meaning of life is to plant trees, under whose shade you do not expect to sit. ~Nelson Henderson

On Friday it was my one year check up with the surgeon who did my Lymph Node Transfer. In fact it was exactly to the day, March 14th 2014, and what a year this has been!! The doctor was happy with my progress, we established by the ultrasound that two functioning nodes are present, maybe three, improvements in the leg seem to be inline with what is expected at this stage. These changes are not easy to measure, as it is more about the condition of the leg by the end of the day. What I have noticed in the last few weeks is the ankle remains the same as in the morning. Prior to the LNT my ankle would have puffed up by the end of the day, even in my compression stocking, especially if I had to sit with the leg down and not elevated. Sitting at a conference, working at my desk, sitting at the table, talking to clients, standing to long, these and more would all have led to swelling. I can now do all of these things with out the ankle and foot getting all puffy! This is a huge plus as it means the nodes are starting to work. However although my L-Dex reading is now 7.1 the actual measurements are similar to the morning I was measured pre surgery. These measurements have been lost, but I had some old ones, so can compare those. My leg was never very big, as I would not have been a candidate for this type of surgery. Had my leg been larger or more fibrous I would then have needed liposuction, or a mix of LNT and liposuction, as some have had. Decisions on the type of surgery required and suitability can only be made by the specialist plastic surgeons and depend on the condition of the limb and how much fibrous tissue is present. Surgery for me was also to reduce/stop the incidence of infections.

I am part of a research program, at Macquarie University hospital in Sydney, and doctors have realised that measurements alone are not giving a clear picture of the improvements in the limb. They do not show that the limb has softened, they do not show the difference over the course of the day. There is however a new machine arriving that measures “moisture” in the limb, with this they hope to be able to do some more accurate, before and after comparisons. It also needs noting that the Lymphasytagraph that I had at six months, showed the injected dye moving up to the pelvis 20 minutes faster than pre surgery. Therefore results are a mixture of different things, L-Dex, Lymphasytagraph, ultrasound, MRI, measurements and mine and the doctors observations. Over the next year it will be interesting to monitor on going progress as the nodes continue to grow.

My doctor has suggested that I do two weeks of Complex Bandaging and Manual Lymph drainage, which will entail a trip to the hospital everyday to the physio department. He has requested this to move fluid out of the knee and middle of the leg, as this is much slower to reduce. He feels this would give the new nodes a “boost” and help them to work more efficiently, once some of the more stubborn fluid is removed. After the surgery my knee blew up like a football, so this has been the slowest area to respond. My next visit to the doctor will be in three months time to see how the Complex bandaging has helped.. Is the knee swelling during the day and are the nodes coping better? At this stage I am still wearing a compression stocking 30-40mmg. This may need to be reduced to a smaller size after the bandaging…

What should be remembered is that every patient is different when it come to treatment of their Lymphoedema. Some will be suited to surgery and some not. Plastic surgeons, who specialise in this type of surgery, will assess each individual, decided on suitability and if they fit the criteria, what surgery would be best. I write this blog from my personal experience and that of others, but in no way does it replace a specialists assessment. Below are some links to information on various types of surgery for Lymphoedema.

http://ecancer.org/journal/letter/9-is-there-a-role-for-surgery-in-the-management-of-lymphoedema.php

http://stanfordhospital.org/cardiovascularhealth/lymphaticvenous/treatments/surgery.html

http://corinnebeckermd.wordpress.com/about/

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/dealing-with-cancer-treatment/lymphedema/index.html

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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.
https://lymphnodetransplant.wordpress.com/ Thanks

Six month check-up

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Tomorrow is my six month check up day to see if there is any progress after the Lymph Node Transfer/transplant I had in March. To say I am anxious is an understatement, as I want there to be signs of improvement, but not sure if there will be. I am to have an MRI to check the fluid levels in each leg, they compare the good and bad leg and show % differences. I am to also have a Lymphasytagraph which maps the lymphatics in both legs to see if there is improvement. This is a very long test, as they inject radioactive fluid between the toes (yuk) and then take pictures over a four-hour period to map the progress. I am due to arrive at the hospital at 7am and will be there till the afternoon as the MRI also takes an hour. I will have my iPad and phone to keep me occupied!! I hope to get the results while I am there as not due to see the doctor till the end of October. After tomorrow I will know more!!

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.

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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!!

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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.

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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!

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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!

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New Beginnings

Lymphatic system

Lymphatic system (Photo credit: Wikipedia)

I have been asked what Lymph  Node Transplant Surgery involves and the criteria needed to be eligible. I hope in this post to be able to answer those questions, however I can only answer from my own experience as every hospital and doctor world wide would be slightly different. If you are interested in these procedure you are best to investigate your own options.

My first appointment was to ascertain if I would be a suitable candidate for Lymph Node Transplant or Liposuction. Measurements of my leg were taken, in comparison with my good leg, also the condition of skin and my own general health both physical and mental. It was decided that my next step would be with the plastic surgeon who performed the transplants. The usual criteria was to have had lymphoedema for less than five years but my leg was not fibrous or much bigger than my good leg (I believe less than 10% bigger) and skin and general health good. Before a decision could be made I had to have a Lymphoscintigram.

A Lymphoscintigram maps the lymphatic system and how well it performs, in my case I was to have both legs mapped. Tiny injections of radioactive material were made between each toe, then for four hours pictures were taken, using a Gamma Camera, as the material passed up my legs. Lymph nodes showed up as large black dots and the lymph vessels as tracers up the legs. This test showed I still had lymphatic activity and nodes  in the ankle of my bad left leg but the lymphatics were much slower in this leg than the good one. My left knee showed some lymphatic activity but the left groin had no lymph nodes but in the right leg the groin shows seven lymph nodes. The outcome of this was that there was still enough lymphatic activity in the left leg to allow for a Lymph Node Transplant! WOW!!!

Ann Arbor Hodgkin's Lymphoma; Lymph Node Regions

Lymph Node Regions… Ann Arbor.. Wikipedia

My understanding of the surgery is that I am to have a small area removed from my neck that contains lymph nodes, vein and artery, then using micro surgery this is to be inserted behind my knee to improve the lymphatics in my left leg. If successful it will give me better immunity to infections replacing lost “filtration stations” and could help the lymphoedema but I have no guarantees! Prior to surgery, yesterday, I had an MRI to look at the structures in the leg. The surgery is to take seven hours, I guess after I will know more!

The thought of a cut on my neck scares me but the doctor has said that the neck is a rich source of lymph nodes, so maybe some scarves for a while! This is certainly a time for New Beginnings what ever the outcome.

My juice today carrot, ginger, cauliflower and beetroot.

Fruit and vegetables, Fremantle Markets, Frema...

Fruit and vegetables at Freemantel Markets Western Australia Wikipedia