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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Are you Heating Up or Cooling Down?

helensamia:

These are some great tips for the summer months and travel… Thanks for sharing …

Originally posted on Life With Lymphedema:

Does anyone else find his or her symptoms worsening during the summer months? Just because summer is heating up, does not mean your Lymphedema has to. I have made it a point to keep track of my personal journey and have also spoken to others affected by Lymphatic conditions to provide you with some helpful tips and tricks. The most common effects of increased Lymphatic symptoms more so during the summer months seem to be heat, humidity, travel, diet, dehydration and stress. So how do we stay mindful of these effects in order to maintain a healthy lifestyle and thrive with our conditions?

First I encourage you to journal, take photos and track your symptoms good and bad. I have gained so much from doing this since being diagnosed. It has allowed me to mentally and visually track my progress and grasp a more in depth understanding of tools that may…

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Elizabeth shares her lead up to Surgery on 19th June

imageThis is the latest update from Elizabeth who will be having surgery with Dr Chang on 19th June… I am sure that we all wish her well and thank her for sharing with us her progress…

“I am beginning my countdown to June 19, 2015 which is my surgical date for a lymph node transplant and the lymphaticovenous bypass with Dr. David Chang at the University of Chicago Medical Center. I initially found out about Dr. Chang from this blog on which I am presently writing. I am so grateful for the support and the commeraderie I have received on this blog-The tears, feelings of hopelessness/helplessness, not to mention the loss of body image was something I had not experienced before. Once I read about Dr. Chang from this blog,(he was originally from the MD Anderson Cancer Center in Houston, Texas) I felt my first rays of hope. For this reason, I vowed that I would share my story so that I could help others–so others will not give up searching for a more permanent solution instead of the countless conservative measures that we Lymphies must endure.
I want to share my experience as I go along so I don’t forget anything.

I went for an evaluation with Dr. Chang in September-a lymphoscintigraphy is a test where dye is injected between the toes to determine where the lymph nodes stop draining. After being told that the drainage in my left leg stopped at my knee, I knew I wanted to have the surgical procedure as soon as I could work everything out with my place of employment. I researched to make sure Dr. Chang was in my network for my health insurance, and Thank God he was as was the surgical procedure.

Dr. Chang emailed his research to me so that I could understand the procedure and what my chances were of getting back to “NORMAL”-All I want is to get my left leg measurements to be similar to my right leg, (which is still normal). The difference in measurement of my left leg to my right leg is about 2 inches bigger in the left thigh, 1 1/2 inches bigger in the left knee and about 2 inches bigger in the left calf. I have been applying wraps, compression garments, bedtime garments, MLD-you name it, I have been the most compliant patient but I really need a more permanent solution—In order for me to put on the Elvarex 1/2 panty 40 mm of mercury compression stocking, I have to sit on the floor with a pair of Playtex purple rubber gloves and pull up this thick stocking even when it is 95 degrees outside. I wear the stocking under my blue jeans as well as under the spandex I wear to the gym. Now finally, even though I know this is a chronic condition and I will always have to wear a compression stocking, I am hoping the amount of compression will decrease after the surgery. Maybe I’ll be able to wear a jobst compression panty hose that has 20-30 mm of mg compression instead of 40 mm. Everyone needs hope-The vascular surgeon here in CT that I confer with occasionally, told me that I should speak on the topic of lymphedema since I have researched this topic so much and feel so passionate about it. While I don’t feel knowledgeable enough or confident enough to talk to a group of people about lymphedema, I would love to help anyone get past the emotional aspect of this chronic disorder. I would love to give this disorder a face-

A short time ago Sandra Lee from the cooking channel told the world that she was having a bilateral mastectomy. My heart goes out to her because everyone who has cancer will have lymph nodes removed. With the removal of lymph nodes, comes the possibility of LE. I will continue to post information so that I may help others who may be thinking about this procedure. Please Pray for me. God is listening.”

Thank you- Elizabeth

We wish you all the very best on the 19th June… Rest and heal after… We look forward to hearing your progress. Take care Helen

Help support the National Lymphedema Network!

Originally posted on The Lymphie Life:

Throughout the month of May, the National Lymphedema Network is running their second annual Stomp Out Lymphedema virtual walk to raise money for lymphedema education and awareness. “While the field of lymphology has come a long way, countless patients with lymphedema and other lymphatic disorders remain largely unheard,” according to the NLN. “Patients continue to be misdiagnosed or worse—ignored. The Lymphedema Awareness Campaign’s goal is to change that.”

Last year, the NLN raised almost $20,000 to launch various initiatives through their Lymphedema Awareness Campaign. These projects included educational videos and free education kits to be distributed to recently diagnosed cancer patients in efforts to spread awareness about lymphedema before it develops, and to give them the proper knowledge if it does. This work is invaluable in empowering lymphedema patients and educating the medical community.

The NLN are in the midst of this year’s fundraiser and, with about two weeks left…

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Stronger Together – An open letter to the lymphedema community

Originally posted on Life With Lymphedema:

One of the major reasons that we wanted to start this blog was to bring together primary and secondary lymphedema in the same place. We understand that there are some differences in our challenges, but we will never lose sight of the emotional side that connects us. Encouragement towards one another makes us stronger as people and friends. We grow from our struggles and thrive with the success of managing our lymphedema together.

It is discouraging to hear people complain that cancer-related lymphedema gets too much attention in the media. We understand that it is frustrating for people with primary lymphedema to feel ignored. The reality is that primary lymphedema is much harder to diagnose. It is less likely to have an obvious cause and it can show up a different times in a person’s life. However, we believe that the major point is often missed: LYMPHEDEMA IS BEING TALKED…

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Lymphedema Awareness Day

helensamia:

Joining together to build awareness of Lymphoedema. Thanks for this post that brings together those giving Lymphoedema a voice.

Originally posted on The Lymphie Life:

Happy Lymphedema Awareness Day!

Today is a day for us to join together and use our voices not only to spread awareness about lymphedema, but to celebrate our amazing community. I am constantly in awe of the lymphie spirit, which is so persistent and positive in the face of something that can, at times, feel so hopeless. It’s true that there is no cure for lymphedema, but there is hope through spreading awareness—and that’s what today is all about!

Established by the National Lymphedema Network in 1994, Lymphedema Awareness Day is specially designated to honor lymphedema patients and our health care providers. It’s also a day for us to raise our voices and let the world know that we’re here and that we deserve treatment, insurance coverage, and support for this condition.

Lymphedema affects millions of people worldwide and can be caused by injury, trauma, or congenital defects in the…

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