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

31 thoughts on “Elizabeth shares her lead up to Surgery on 19th June

  1. Hello Elizabeth

    Thank you for sharing your story. It also shows that no matter how strict you follow the guidelines for le treatment, it can still go worse. Doctors here seem to think that conservative treatment prevents it from going worse. So if it is worse you are not taking care of it. But many stories show it different. Conservative treatment is sometimes not enough to keep it under control. Now only the doctors need to realise this (what many patients already know).
    Sharing your story might help this process. So thank you and sending you good vibes from far away ☺️.
    Keep us updated!

    • Hello Kharimata–It’s funny how God works in our lives!!!—after my surgery in June and coming home and sharing the journey with all of the bloggers on this site, around September,I started getting tired of this long journey-I continued wearing the Elvarex, and the quilted garment at night but I started getting a bit lazy when it comes to going to the gym etc…..I continued going at least 1-2 times per week but I was going in a half hearted manner….. Then about 5 days ago, I wanted to eliminate 1513 emails in my inbox—Once I started re-reading the messages in this blog, I realized how much I missed the give and take we offer to each other. Furthermore, reading other peoples entries, re-motivated me. In addition, I realized my own measurements in my left leg had decreased. I have not really measured the leg since coming home from Chicago because I felt that I would “see” the decrease and I did not want to get disappointed by measuring it-But that is not true—since the reduction occurs so gradually, you may not “see” the results until you actually measure it a few months later….Happily, I thank God every day for the favor he grants me in guiding me to re-read blogs or go to the gym, etc…..plus getting back into this blog and sharing with others all of the hardships and emotional ups and downs of this journey..Thank God we are not alone–We all have each other!!Liz

  2. Dear Elizabeth, I have met with Dr. Chang and am considering the same surgery. I have primary lymphedema in my left leg below the knee. He is recommending bypass as well as node transplant, but he is also comfortable doing just bypass on me to start if I wish to go the conservative route, to see if that is enough. The reason I hesitate to do the node transplant is because my situation is primary (congenital) and I am not sure if my lymphatic system overall may be compromised, in which case I would hesitate removing nodes from anywhere. However, he seems very confident taking from the neck area is a very safe harvesting area, but he still admits there is theoretically a chance it could cause a problem but extremely remote. He has never had a patient of his experience a problem. I am curious, is your situation primary or secondary lymphedema and what have you found in your research about this? I know the body has redundancies built in and the clavicle area is certainly node-rich. That said, though, even with a remote risk I still hesitate. On the flip side, having the node transplant part, especially with the leg, can be the factor that really leads to a great outcome because it will generate new pathways over time (a whole highway of vessels) versus the bypasses which are fewer. I do know however, the less severe the lymphedema and less scar tissue, the more effective the bypasses are. That is my situation, so the bypasses may be enough. I am trying to weigh this decision now and know I will at the very least for sure do the bypass surgery. Best of luck and I really hope you post your post surgical progress!

    • There is a specialist MRI examination that maps the entire bodies lymphatics.. This is very helpful especially in the case of primary LE… I know it is available in New York with Dr Smith or Dr Dyan.. They both always use this.. Dr Becker also uses it in Paris.. Maybe you can ask Dr Chang if this is available at his hospital as it would help you make a decision.. I had nodes taken from the neck as my dr said we had many nodes there but i had secondary LE not primary.. It is difficult when you have to make these decisions … From Helen

      • Thanks! Yes, I am aware of the MRL and all the physicians you mentioned. That was my thought exactly, but Dr. Chang’s response to that was that the MRL does not show him anything more than what he can see with the ICG dye. However, that doesn’t quite square with me because the MRL shows the nodes and vessels as an entire picture and the system as a whole. That said, I know Chang is one of the preeminent surgeons/pioneers in this field and I just get the impression he thinks the MRL doesn’t add enough value commensurate to the expense and elaborate nature of the test. My gut, though, says that something like that would be exactly what would give me the comfort level I’d need.

        • Yes it is having that whole picture when you have primary but i guess he feels he can see many nodes in the neck area and feels happy with that…. He is certainly a well respected surgeon in this field with quite some experience…. At least you have spoken with him about this and got his opinion but I understand the hesitation…

        • I wasn’t sure where to put this entry so I’m hoping this is a good spot. 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 operatively 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

      • Also, you bring up a great point and I suppose I could let Dr. Chang know I am willing to travel to New York to have the test, and would provide the data to him to review. He certainly knows how to read them-I think he doesn’t use it for several reasons, the most obvious that there is not an MRL in Chicago, where he’s located. If it were covered by insurance (which I feel it probably would be because my policy seems to cover all this stuff) perhaps it is worth it to me to go through the hassle of it for my own piece of mind. Do you know if these MRL’s tend to be pretty reliable? Thanks so much for reminding me of this option! I have heard on symposiums that Dyan and Smith are willing to help patients get the diagnostics even if they aren’t going through surgery with them.

        • For peace if mind and your concerns in the future it is probably worth it for you if you are able to do that… I know others with primary who have had it done with various results… We do not have this test in Australia but i would really like the opportunity to take it….

          • Thank you, for your post, Helensamia. when you say you know others with primary with various results…what kind of information do they find out? Do they find if the problem lies in vessels and/or nodes? Do they actually see areas of the body where there are nodes lacking or pathways obstructed? Also, I don’t know if I mis-spoke earlier so I should clarify: I am not sure Dr. Chang uses the ICG dye to check the neck nodes or not…I need to get clarification on that. I think it may be that he just knows from lymphatic anatomy that the neck is a rich source…really not sure and I don’t want to communicate inaccurate information.

            • Kimber who has posted on this blog has primary LE in both legs but the MRI showed her upper body to be all normal… So nodes were used for LNT from upper body… Another lady who has LE in one leg found that her upper body was also lacking some nodes too so surgery not suitable.. I believe it maps the nodes and vessels but not sure exactly… Post surgery at one or two years it shows the progress in the growth of the transplanted nodes which is very exciting…

    • Ann, My LE is secondary lymphedema from a low grade (stage 1) uterine Cancer–why did they have to remove 6 lymph nodes from my left groin when I had such a low grade tumor?- Anyway, I too had the same fear as you regarding the removal of lymph nodes from my right clavicular area- I am a nurse and despite having taken care of many radical neck dissections I have never seen LE of the neck. That is basically what Dr. Chang said to me also. Our necks are loaded with lymph nodes. Our bodies have a total of 6-700 lymph nodes, which is amazing!! How would the removal of 6 lymph nodes from my groin cause this amt. of pain and heartache?
      Actually, there is a fine balance in our bodies and any change disrupts the balance. I have been the good girl scout in caring for this LE–Followed all rules, have always kept my weight at a constant, stayed in good shape and kept exercising, and now I’m ready for a new chapter. All I want is to get the word out there-Dr. Chang’s office has been wonderful about getting back in touch with me since I too, have fears about removal of lymph nodes from one spot to another, but I have learned to trust him and the research he has done. Dr. Chang has been doing this procedure and researching the patients for 20 years. I know I will always have to wear a compression garment but my hopes are that I will eventually be able to wear less compression, maybe a 20-30 mm of mercury compression garment instead of the 40 mm of mercury that I presently wear in the Elvarex compression. I am hoping my left foot and ankle swelling will decrease. My foot size has not changed, it is still the same length , a 7 1/2, but the swelling of the left foot and ankle have prevented me from wearing some of the pretty shoes I bought pre-LE–I have been living in sneakers because they are mesh and they have more “give”… In the end, I am grateful to be cancer free and alive 9 years after my hysterectomy (stage 1) –we can all get through this–we are tough-we are women and we can handle ANYTHING..Liz

  3. Liz, Thank you for that information on the clavicle area. You being a nurse and having had clinical experience that helps with your understanding of the nodes in that area is really meaningful. Also, I will include you in my prayers…I know this procedure will be something that should really make a tangible difference for you! Looking forward to hearing about your progress after and wishing you well -Ann

  4. Here is what my Physical Therapist wrote in an email I sent her, asking her about the safety of harvesting nodes in the neck: “There are a lot of LN in the neck (but I wouldn’t say it is the most plentiful area)…but the reason they harvest from there is it is the least likely place to cause complications. The reason is simple–gravity. The lymphatic system does not have to work as hard to drain the face because it is draining downward into your circulatory system at your heart. There is a Dr Massey (sp?) that was at the conference I went to at U of C and she stated that she only harvests from the neck due to low risk AND she does not practice with a big university health system and cannot get all the high end tests paid for by insurance. (solo practitioner, now in Neworleans I think). She is well respected and liked in the PT world.”

    • Yes Dr Massey does a lot of surgery with Breast Cancer patients and others… The reasoning makes a lot of sense.. Certainly so far i have not heard of anyone getting LE in the doner site… The only side effect i have heard from the neck as the doner site has been some nerve pain for a few weeks after but this has then settled.. I did not have this problem after my surgery in fact both areas were fairly pain free other than the first few days post surgery.. I think day three i stopped my pain meds.. But again everyone responds differently.. I know when i first heard the nodes would be taken from my neck i was a bit anxious but since i have heard it is the preferred area with most of the surgeons..

      • I must say, this site is a Godsend for those of us considering surgery. I did check Corrine Becker’s website and she discusses donor sites there. This is my own theorizing, but as I piece all this together, it is seeming to me that mapping is super important if taking from regoins around the arm or groin (auxilla, thorax, etc.) but perhaps mapping is not as important if taking from the neck b/c of gravity. This could explain Dr. Chang’s dismissal of needing the MRI. Just a hypothesis on my part at this point. I plant to try and somehow get another opinion on this from a credible surgeon. It would be great if I could somehow get in touch with Dr. Becker’s people to see if she’d give any insight. Thank you so much for starting this site/blog and I am for sure going through with LV bypass in 2015 and weighing if I do LNT as well but regardless I’ll be doing LVB and would love to share my experience when appropriate to help anyone else who may benefit from hearing about my outcomes!

  5. 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?

    • I will share this comment as a post then everyone who follows the blog will see your question… If you use the search ability on the blog at the end of the posts and put in Kimber… She has primary LE and has had surgery with Dr Becker… Also Jennifer has had surgery with Dr Becker.. Sadly at this time Dr Becker is not practicing in New York any more only in Paris… There are some who have been to France to have surgery with her…also search Dr Becker for links to other posts in this blog … I hope you get some responses to my posting this … Helen

      • So many thanks for your wonderful blog. Is there a way to get in touch with Jeanie on your site who had surgery with Dr. Chang a year ago? It would be great to see her progress now. Looks like the last post I can find of hers was only 4 mos after surgery. Also, I search Chang on your blog and it looks like there are a few who’ve been treated by him, but no primary. ? Is that correct?

        • I do not have a contact for Jeanie but hope she may see this and respond… Not so many people with primary LE have had this surgery done as I think some Drs at first would only do the surgery on those with secondary LE… I think they were being very cautious at the start but maybe now are embracing the Primary LE more.. I hope we get some response to your questions but sometimes it takes up to two years for people to see results from the LNT. Then people forget to repost their progress…

      • Oh, and Dr. Becker said in an email to me she’ll be practicing in Miami soon. I asked her how soon and haven’t heard back yet. Seems like she’s really done a lot with congenital.

        • She has been doing this surgery for more than 20years but sadly has not followed up on results etc so it is great research lost… I think that the DRs now are collecting data as it is so important for on going progress… Patients really want to know the results of others as this is a big decision to make so it is a great pity that Dr Becker does not have much of these.. She does have some articles on progress that she maybe able to send you..

  6. Pingback: Follow up with Liz.. 8 months post LNT | My Lymph Node Transplant

  7. I stumbled across this page and noticed two stories that stuck out to me!!the one of Cindy and Elizabeth I would like to speak with you both further about your surgeries have lymphedema right lower extremity and had surgery with Dr.Granzow in California 3 years ago I live in the Carolinas my personal email is roxymachine270@gmail.com look forward to hearing back soon

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