5 months post surgery update and MRL results

helensamia:

One node growing… But wish and hope there are more… Good luck xxx

Originally posted on My lymph node transfer journey UK:

Hi all,

So I had my MRL on the 3rd july and just received some preliminary results this week. The surgeon says it is good news, that they saw one functioning lymph node on the MRL and this means that the flap is alive and working. I was a little disappointed that they didn’t see any more nodes as surely one node can not do what I need it to do. I know it is still really early days and there may be others there that were just not seen but it is so hard to be patient. I am hoping to have another MRL near to xmas time where hopefully they will see more growth from the free flap and the channels forming more pathways. Has anyone else had an MRL before and if so what did they see? I know i should feel so happy that the flap is…

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Liz hits the pool.. Great Lymphoedema exercise

imageHey Everyone,
Last evening was another milestone–my first time in our community pool in 2 years!!!–It felt wonderful–Very ‘freeing’–no need for compression garment just pure freedom. My affected leg felt exactly like the unaffected leg…and guess what?–no one even noticed my leg. I had this misconception for the last 3 years that the whole world was looking at my leg but that is not reality. I had the feeling that my leg was so important to everyone and people would be staring at my leg but the truth is …it was only important to me which is still huge but it can not rule your life (It ruled mine for 3 years and I’m so sorry I allowed that to happen)….The mild compression the water provides is gently messaging your extremity and encouraging lymphatic drainage.

We have been having a miserable heat wave here in CT. for the past few days and the water in the pool was cool, clean, and invigorating. I paid for a new membership so that I could remain motivated to go to the pool at least 3 times per week and get that ‘feeling’ again. Hopefully, it is encouraging those new lymph nodes in my groin to grow big and strong.

Someone had written at one time that she wore compression garments in the pool. After discussing this point with Dr. Chang’s LE therapist and my therapist here in CT. I wanted to clear up the fact that compression garments in the pool are not needed. The water pressure provides that service to us. Thank God!! Liz

Previously I have written about Aquatic exercise and how good it is for Lymphoedema.. This link also includes videos of water exercises… Water is a natural compression and just walking up and down the pool is great for the legs as there is more compression at the feet and less going up the body… Just like a garment!! Freedom… Helen

https://lymphnodetransplant.wordpress.com/2013/07/21/aquatic-exercise-for-lymphoedema-includes-video/

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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Surgery with Dr Chang…. Liz… Chicago

imageThis is an update from Liz about her surgery with Dr Chang… It sounds like it has gone very well..

“My Surgery is completed!!! My surgical date with Dr. Chang was on June 19 and I am back home now and the waiting game begins. I will start at the beginning of my surgical journey and hope I can answer any questions anyone may have.

My husband and I arrived in Chicago on 6/17- on 6/18 I was scheduled for 2 appointments-one with the Lymphedema Therapist to measure my left leg as compared to the good leg; the second apt. with Dr. Chang. Both appointments were short and to the point and then we went back to the hotel room which was right on campus-the Quadrangle club. We were within walking distance to the hospital. I did not want to stay in downtown Chicago because the trip up to the medical center was a distance by cab and I was afraid of arriving late for appointments or better yet, I did not want to arrive late on the OR date!!. Furthermore, the Chicago Blackhawks won the Stanley Cup that weekend and it would have been chaos cabbing it up to the medical center.

All day on 6/18 I ate light because I was nervous; my last bite of food ending ay 8pm. On 6/19, at 5 am my husband and I walked to the hospital (about 3 blocks). Everyone was helpful and courteous-a new modern facility-courteous, professional service-everyone was very helpful and calming. I was escorted to the pre-op area where I changed into the OR gown, had an IV inserted into my arm and answered questions, while my husband stayed in the skylab area (7th floor). The gave him a “ringer” like they give you in “Outbacks” (to let you know when the table is ready) it is given so that the hospital staff can let the family know the progress of the patient. Once my pre-op tasks were completed, they allowed my husband to come to my floor to be with me. He was escorted by a patient representative-they were all so thoughtful and professional.

Finally, at about 7 am the anesthesiologist and residents came over and eventually took me into the OR. I said the Lords prayer in Greek as they were wheeling me into the OR!!! Next thing I knew I was in the recovery room- the surgery took about 4 1/2 hours-Dr. Chang did a LNT, and 2 lympho-venous bypasses below my knee. I had no incisional pain at all- I had 1 Jackson Pratt (JP) drain in my right neck and 1 JP drain in my left groin hooked up to a Doppler so we could hear perfusion of the lymph nodes. The only pain I had post operative was a severe anesthesia headache and some nausea. I was treated for the nausea with an IV antiemetic, Zofran. The headache persisted from 1 pm till 8am the next day-they could not give me anything for the H/A (not even Tylenol) because they did not want me to have anything in my stomach in the event I had to go back to the OR. Finally, morning came (6/20), and I was beyond hungry -it had been 36 hours without any food or water-LOL -I ‘room serviced’ almost everything on the menu-(not really)-all I can say is they did finally give me some Tylenol and about 12 hours later the world was a better place-my husband googled anesthesia and the first side effect is headache- so then I understood. I did not have any incisional pain at all. From the first touch of my calf, it felt soft to touch–that was such an emotional lift!! it brought tears to my eyes. The leg was wrapped with the comprilan dressings and the Doppler continued making swishing sounds all night long. The doppler was connected to my left groin. By morning, the foley catheter (which collected my urine) was removed and I was allowed to get out of bed and walk to the bathroom- I would disconnect the Doppler and walk to the bathroom. When I returned to bed, I would reconnect the Doppler. Now it was Saturday morning, 6/20. I was getting antibiotics through the IV for prophylaxis, and IV fluid but within 12 hours, the IV’s were discontinued because I was eating and drinking. On 6/21, the PA came in to see the leg and unwrapped it- when I saw my leg for the first time, I was really thrilled at the decrease in the measurement from the knee down to the ankle. Dr. Chang said I was a prime candidate because I had been wearing compression garments for the last 3 years and also using a nighttime garment and the LE was controlled. I have worked very hard in all aspects of this chronic disorder and all I want is my life back to some sort of normalcy. While in the hospital, I would disconnect myself each hour from the doppler and walk up and down the entire corridor- I figured the corridor length was approx. 1/8 of a mile and shaped like a horseshoe; it was not difficult.

From the groin to the knee it will take from 6 months to a year or maybe longer to see a difference. Depositing a lymph node into a new spot is like putting a seed in the ground-flowers don’t spring up immediately it takes a year or two to see growth from that seed–the lymph node is the seed and it grows over time to become a channel of roots and stems. On 6/22 I was Discharged from the hospital-one drain was removed that day. I still had one drain pinned to my t-shirt but I didn’t care. We took a bus into Chicago and walked a good distance. We even went up to the top of the Trump Tower and had cocktails! On a pedometer I brought with me from home, the distance we walked was about 7 miles each day-not speed walking but casual walking. We stayed at the hotel on campus until 6/25. My last appointment with Dr. Chang was on 6/25. He checked the drain sites and removed sutures in the groin-by now both drains had been removed.

It was an uneventful experience-Thank God. Meaning, what had to get done, got done without complications-now, all I have to do is wait for the results. I feel I have done all there is to do for this disorder and it is time to get on with my life.

I am thanking God for His guidance and standing by my side through this long journey- I know that I would not even know Dr. Chang’s name if it were not for this fabulous blog site-I believe God led me to this blog site and allowed me to gain knowledge and humility from all of the fabulous and heartfelt stories I have read over the last 2-3 years. Thank you all for your prayers during my surgery. I am praying for you all as well.” Liz

Thanks Liz it is good to hear that you are going so well… It sounds like a very positive experience.. Thanks for sharing with everyone ..Helen

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5 month post surgery update

helensamia:

Sharing the blog if a lady who had LNT to her arm in England …

Originally posted on My lymph node transfer journey UK:

hi all,

sorry I haven’t written in a while…life sort of takes over! Some of the reason for not writing is that I haven’t seen much of a change since I last wrote. I had a check up in birmingham and the nurse is still optimistic that the new nodes are working although I haven’t seen any more improvement in my measurement since my last post. The lymphodema nurse now thinks the fluid has moved and what is left is fat that was originally lymph fluid. She has suggested that I discuss the possibility of liposuction to remove this fat…but says it is too early days to do that yet. I was sort of horrified at this..the last thing I want is another operation but I suppose if it helps  my arm look like normal again then I’d definitely consider it. I am booked in to see my surgeon on…

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Sometimes life does not go as planned!!

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I am sure that those of you who have followed my blog over the past couple of years will wonder why I have not done an update of my own progress. March 2015 was the two-year anniversary of my Lymph node transfer and I am very happy with the results, not a cure at this stage but a huge improvement. There will be more on this later…

The reason for my lack of posting is I have been very ill with another late stage effect of radiation and cancer treatment. I started to experience weakness in my legs, I had falls, my legs felt numb combined with pins and needles,(peripheral neuropathy) gradually it became harder to get up stairs and to walk in general. December 2013 was my first appointment with a neurologist…. 2014 was a very difficult year, full of doctors appointments many, many tests, scans, a biopsy, neurological tests etc. I was seen by two neurologists, an immunologist and also visited a Clinic that specialized in Functional medicine.( Combining alternative medicine and conventional medicine).By the end Of 2014 I was given the diagnosis of Radiation Induced Lumbar Plexopathy, a very, very rare and untreatable side effect of radiation that leads to paralysis of the legs due to damage to the nerves in the Pelvis. http://emedicine.medscape.com/article/316604-overview#a0101 Women who have had Breast cancer treatment can get Radiation induced Bracheal Plexopathy which leads to weakness or inability to use the arms and hands.

The first three months if this year was spent in hospital, doing intensive neurological rehabilitation, in the hope of regaining the use of my legs. Sadly this did not happen. While in hospital I learnt to use a wheelchair, and everything else I would need to manage with paralysed legs. We have had to sell our house and we will be moving into a home that is wheelchair friendly. Thank goodness for the help of those physios and occupational therapists who got my life back on track while I was in hospital. You can imagine there has been many tears coming to terms with this and I never imagined I could have something healthwise that was worse than the Lymphoedema!!!

It is very hard for me to write this, only 0.16% in 1000 of those who have had pelvic radiation  get this side effect. It can happen from 0-30 years after the radiation. It is difficult to get information and to connect with others but via the internet and the American Cancer Society I have connected with a couple of ladies. This is certainly not something they tell you about when you are having Radiation!!! No I am not starting a new blog at this stage, or trying to build awareness of this side effect!!! All my energy goes to getting through each day and learning to live with my new “normal”.

However even with all this the Lymphoedema journey still continues with I feel good results. Due to my illness I had to withdraw from the research program at Macquarie University Hospital Sydney as I could not have the MRI or Lymphoscintigram done. The measurements would also all be effected due to the muscle wasting of the legs, due to lack of movement. Since the start of the year I have not worn compression stockings, they are difficult to get on and uncomfortable on the sensitive nerves in my legs. Surprisingly my legs have stayed really good without compression. They are soft all the time, a bit of swelling in the ankles goes down over night and I have had no cellulitus since the surgery in March 2013… My lower leg is the same size as my good leg and the thigh a little bigger but does not get worse. Maybe a transfer to the groin as well as the one to the knee would have helped this but there will be no more surgery for me now!!!!

One of the things that is important for Lymphoedema is movement so on the recommendation of the rehabilitation doctor in the hospital I got a MotoMed machine http://abilityinmotion.com.au/products/movement-therapy/motomed/ This has been the best thing I could have done for the Lymphoedema and for my paralysed legs as it keeps the muscles moving and keeps the circulation going. I am unable to peddle, so the motor kicks in and I can do 25km of passive exercise plus I usually do 5km of active exercise, with my arms, for the upper body. This and deep breathing every day helps to keep my Lymphoedema in order, plus I elevate the end of my bed at night to help any swelling. Even the ankle on my good leg swells a bit sitting in a wheelchair all day, so there is double reason to look after my circulation.

I intend to keep this blog going and to share people’s stories and their progress. It has become quite a useful resource for those going ahead with surgery for Lymphoedema. Over the past two years I have noticed an increase in those having LNT and Lymphatic Bypass surgery, LVA, plus Lymph sparing liposuction to help their Lymphoedema, in both arms and legs. I think we are yet to find a 100% cure but there appears to be improvement, how big the improvement depends on the condition of the limb pre surgery and the care given post surgery. It can also take a number if years to see the ultimate response to surgery. Please keep sending me you stories and adding your comments to the posts, it is this sharing of knowledge that helps. Of course non of this replaces the advice of the surgeons who are looking after you, I am also glad to see that some of them are collect data on their results.. This is so important for the future…

Thank you to all of you who have supported me in the past year and who were aware of my problems, you have made it all a little easier to get through. Everyday for me is now a new experience……

If you would like to contact me please send an email to helenbrd@bigpond.net.au

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A question for you all … Please help…

Ann has asked me to share this question so more of the people who follow this blog can answer her questions… It would be great if you would write any answers for Ann as a comment at the end of this post.. If you are willing to email her then please email me your details to helenbrd@bigpond.net.au and I can pass these on to her.. It is a huge decision to go ahead with surgery for Lymphedema and it is very difficult to get answers when it is so new… However everyones experience can only help each other so i look forward to your responses… Thank you so much … Helen

“Is there anyone on this blog with primary LE considering surgery? Anyone familiar with Corinne Becker’s track record? I emailed her and she’s emailed back-I’m impressed. I hear very good things about Chang but struggle with his deeming MRL not of great value. Since my situation is congenital, I can logically deduce that MRL would be a valuable tool when considering surgery on a patient, to know as much as you can about them before operating. However, I think he is just so confident in his procedures he feels it’s just another expensive test. I think he feels the solution/surgery/procedure is the same no matter what the imaging shows.
Dr. Becker, on the other hand, sees significant value in MRL. She distinguishes between hypertrophy and hypotrophy of the lymphatic vessels, and says that will dictate which procedure is used. That in cases of severe hypotrophy (not enough vessels), LVB can actually do harm to the remaining vessels. She uses LNT for hypotrophy and LVB for hypertrophy (too many vessels/tangled mess) and sometimes recommends LNT as well for that. Is anyone familiar with these two categories? Anyone had surgery by either of these surgeons? Is there a way to reach a larger audience on this blog with this question?” Ann

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