Some questions to help Lisa pre LNT

imageLisa sent me an email prior to her LNT…. As you can see she would like to hear how people are progressing, plus any advice for before and after surgery. What we all need to remember is that everyone is different having this surgery, the condition and size of the leg or arm, plus general health. This makes it hard to compare progress, as some will respond more than others plus some quicker than others. Always remember to ask lots of questions and comply with pre and post surgery protocols for the best results. Also each surgeon is different in what his protocols are, some are very strict and some not so much. The biggest thing to remember is you need patience, this is not an instant fix and it can take up to a year to even see small changes.

If you have advice for Lisa please use the comments to pass on your support to her. We would all love to hear how some of you are going who had the surgery in the last two years. How is everyone progressing? What is the best advice you would give someone pre surgery and post surgery?

Look forward to hearing from everyone… Helen

“My name is Lisa and I live in Dallas, TX. I am having the lymph node transfer at the end of the month at MD Anderson with Dr. Alexander Nguyen.

How are you doing since your surgery? Are you still feeling good about your surgery? Is there anything you wish you would have done before or after the surgery that you didn’t?

Just a little background. I had cervical cancer in 2002. Had a hysterectomy but no radiation or chemo thank goodness. I developed lymphedema though in my left leg in 2008.

In 2013, I had the lymphatic venous bypass surgery at MD Anderson with Dr. Roman Skoracki and was pleased with the results but wanted more! Dr. Skoracki has since left MD Anderson to head up the lymphedema program at the Ohio State University hospital. I loved Dr. Skoracki and highly recommend him to anyone in that area…in case want to put him in your blog. I was originally scheduled with Dr. Chang but he moved to Chicago right before my surgery.

Now I’m with Dr. Nguyen and I really like him as well and am scheduled for the transfer on 9/29. At my last check up in April of this year, I told Dr. N I wanted to try more of the bypass surgery. He told me I would get the best results with the lymph node transfer. Actually, Dr. Chang, Dr. Skoracki and Dr. Nguyen have all told me I would get the best results with the transfer but I was to chicken the first time🙂 So I have decided to go for it but I’m nervous, scared and excited and hopeful all at the same time.

Dr. Nguyen is taking the lymph node from my stomach and either transplanting at the groin or calf, depending on where I need it. I will have a drain for several weeks. Did you have any drains? If so, anything I need to prepare for with those?

I would love to hear any suggestions and recommendations about preparing for the surgery–I’m following the blog as well.” Lisa

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46 thoughts on “Some questions to help Lisa pre LNT

  1. Lisa,
    I got your email and just replied to it. I also included my phone number, please feel free to call me. If after surgery you have any questions, or just need someone to talk to, pick up the phone or send me an email. Good luck to you. Please keep us all up to date, using this bog.

    Cindy

  2. It is so exciting to see more and more leg patients getting this surgery. A few years ago, I felt so alone having leg lymphedema. Everything I could find online was about arm patients. I was so grateful when I found this blog (thank you Helen). I hope that everyone that has surgery, will keep us up to date using this blog. Please don’t disappear!! Helen (My Lymph Node Transplant), was my go to person before surgery. I would be happy to share my email and phone number with anyone who is contemplating having this surgery.

    • I am in the process of being evaluated by an interventional radiologist at UPenn Hospital in Philadelphia. Dr. Itkin has a specific interest in lymphedema and is working with a surgeon trained in microsurgery. I trust itkin’s diagnostic skill and experience, but I am not sure about the rest of the team. I really don’t want to be someon’s research paper topic. I’m 60 and developed primary lymphedema in my left leg, and abdomen in April 2014. My health has been good up until then. This past June I developed a chylothorax and have had a total of 5 L of fluid removed from the lining of my left lung. It was tested and found no malignant cells. That is when I started seriously searching for a doctor with an established ineterest and success in diagnosing and treating lymphedema. Dr. Itkin repairs Thoracic duct leaks. At this point it’s not been established where the leaks and blockages are. So I am at the beginning of this process.
      Do you know if this surgery is considered elective by most insurance companies?
      Thanks,
      Kim

      • Kim,
        I believe most insurance companies consider surgery for lymphedema to be investigational or experimental. I’ve never heard them call it elective. Insurance companies are not convinced the surgery produces any long term benefit. Having said this, more and more insurance companies are agreeing to cover lymphedema surgeries. It may be denied the first time or even the second time. My experience is if you keep pushing them, they eventually agree to it. Do you subscribe to the NLN Lymph Link magazine? This issue is all about surgery and lymphedema. It includes an article on surgery for primary lymphedema. Google the National Lymphedema Network for information. Not sure if this is the info you were looking for, but I hope it helps. Good luck to you.

        • Hi Cindy
          Is it possible to scan and send me that article on Primary LE… Living in Australia I cannot subscribe to this Newsletter but i am often asked questions about primary LE… Must check if they have an online version… Thanks Helen

          • Of course Helen, no problem. I’m going to have my daughter help me. If I do it myself it will come over in numerous emails. Not sure how to do more than one page at a time. I’m also sending it to Loretta in NJ. This issue is the best one. Granzow, the PT he works with and 2 other surgeons all wrote articles on the surgeries available. Hopefully, I will get it to you tomorrow.

      • The best thing is to contact your insurance company… Due to the fact that this has caused quite a serious problem with the fluid in the chest area I would imagine it is almost treated as an emergency situation that is having a major effect on your general health… I feel that no insurance company could then call this surgery elective… It is difficult to find surgeons who are familiar with Lymphoedema but in your case it sounds like you have found the right person… It is sounding like you need to have a repair of the leaks and or blockage rather than a Lymph node transfer which is seen as elective by some insurance companies… However more and more patients are starting to get coverage… You really need your Dr to let your insurance know the effects the lymphoedema is having on your general health… Good luck and keep us posted …Helen

    • Hi Cindy,
      I developed primary lymphedema in my left leg and abdomen a year and a half ago. I also developed a 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 had come out of the blue. Can you share a little bit of your history and experience with me?
      Thanks,
      Kim Compton

      • I would be happy to share my story with you. Send me your email and I will go through it all. Have to work today, I will get to it over the weekend. Check out National Lymphedema Network (google it), they have articles on primary lymphedema. I get their quarterly magazine. I will look for articles that might apply to you, scan them and then email them to you. Don’t give up, try to stay positive. I know that is much easier said than done. I also recommend giving into pity parties now and then, just can’t be an everyday thing. Lol I’ve shed many tears. 😢Look forward to hearing back from you.😊

        • I do have some questions for you and it will be helpful to hear advice from a person who has been in this situation. For example, you talk about getting MLD once or twice a week. I haven’t been able to work that in for a lot of reasons. One is that I am a high school art teacher, three of my five classes are ceramics and sculpture so I am dependant upon maintaining mobility. I wear custom flat knit thigh high stocking on my leg during the day and a reid boot at night. I use a flexitouch pump in the evenings because I got carpel tunnel syndrome trying to do the massage on myself every night. My therapist is certified (LANA) but she is mainly all about wrapping the leg and not so much the massage. I may just have to face the fact that I won’t be able to keep up with the job demands of being on my feet. Especially since I notice that now my right foot is beginning to swell. Everytime I think this is stabilizing something new has come up. Last Spring it was the fluid on my lung.

          I was interested to read your story. Bravo to you for being so assertive in getting the treatment you needed! Did I understand it correctly that your LE came on as a result of pelvic surgery? Did you have radiologist who was able to pinpoint the insufficiencies through lymphscintigraphy? I am beginning to think that my issues are diffused through my lymphatic sytem, so I’m not really a candidate for surgery. I’m ok with that. I’m still at the point where I am pushing for more information via imaging about the status of my LE. Where are the leaks and where are the blocks. It would be a small comfort to have some information. From time to time when I get low it would help me fight wild speculation … *my lymph system is turning to shredded wheat*…

          To make it easier I’ll just list some questions, bear with me for repeating anything I’ve already said.

          These are about your pre-surgery issues: Did your medical insurance pay for all of the MLD and physical therapy associated with the LE? Did you wear bandaging after the MLD sessions and during the day? Is your therapist in a practice that treats specifically LE patients? What part of the country do you live in? How long did it take you to find a good physical therapist?

          Thanks, Kim

          • It sounds to me like you are on the right track as to your self care… I also think that as you have primary LE you are right to go for all the scans and tests that you can to find out exactly what is going on … There is also a form of MRI that is available in New York that maps the entire lymphatics… Not sure where else you can get this but you can check with the various specialist doctors… I am assuming you are in the US… If you look on the blog you will find articles from Kimber who has Primary Lymphedema. Use the search button at end of posts and put in Primary Lymphedema or Kimber.. I am sure Cindy will answer your questions too…. The main thing with primary LE is to ensure what is happening with your entire lymphatics before any surgery is considered especially a LNT where node are moved but you may be eligible for a lymphatic bypass where the lymphatic vessels are joined to the venous system… One of the drs who specialises in this surgery could answer your questions …. Look after yourself … Take care Helen

            • I live in the Virginia suburbs outside of Washington DC. You mentioned that there is a place in New York that maps lymphatics. Do you know the name of the institute? I met with a radiologist at UPenn Hospital Center who diagnoses and treats lymphatic leaks in the chest, but he suspects that the lymphatic fluid in my lung is being forced into my chest through negative pressure caused by natural action of the diaphragm, so, bottom line, the only thing he can help me with is the lymphatic mapping. Before I commit to going through the tests I’d like to investigate the resource in New York that you mentioned.

              And by the way thank you so much for running your blog. It has been a strong source of information and support. Kim

            • I suggest you contact Dr Joseph Dayan in New York this is a link to him https://www.mskcc.org/cancer-care/doctors/joseph-dayan
              I am not sure where this MRI machine is but I know that he has used it as with other Drs in New York… Several of the patients who have had surgery and written in this blog have had this procedure pre surgery … Especially if they live in New York… As I said before the only one I know with Primary LE was Kimber… For her only her legs are effected … Her upper body is good… I just feel that this combined with the Lymphosyntography may show what is happening with your lymphatic system… It is such a complex system that has been sadly neglected by doctors and when it goes wrong it causes all sorts of problems.. Especially in the abdomen as it is much harder to treat unlike a leg or an arm… The only other thing is if you are using a pump always clear your upper body first as the fluid from your legs gets pushed up into the abdomen and if this is congested it has no where to go … Also after just try to bring fluid up into the nodes under your arms and the neck so it can clear.. I hope this is of help to you … I have enjoyed putting this blog together as it is a resource for all of us that was sadly missing from a patients point of view… Happy for any questions .. Helen

      • Kim,
        Send me your email address and I will answer all your questions. Most of my history is in Helen’s blog (I don’t want to bore everyone with it again, lol!).
        I’m not positive, but I think I recall reading about someone with primary LE having surgery.
        Some doctors are in network with insurance companies, other doctors, like mine, work with insurance companies and arrange a fee agreement for the surgery (if the insurance company is willing).
        Look forward to hearing from you.
        Cindy

        • khcompton@gmail.com.

          Since I don’t want you to have to recount what you have already written, I will look for your story on the blog. Although to someone who wrestles with lymphedema, another’s story is never boring! Kim

          • IKim,
            My email is najarro2414@cox.net. Not sure if we ever connected via email (I have developed lots of new friendships through Helen’s blog—lots of texting and emailing taking place!) .
            If I didn’t get back to you, please accept my apology. As a sufferer of lymphedema, I know how desperate we are to get information. Look forward to getting an email from you.
            Cindy Najarro

  3. Hi☺ my surgery went very weĺl-have your leg in its best condition-eat right-low salt and wrap and wear compression garment up to surgery. Also low fat a week prior to surgery helps to n have clear drainage. Use a laxitive and empty out prior to surgery or you will be uncomfortable. I stayed 5 days in the hospital but I had to travel from Texas to chicago. Draims-for sure-2 of them-one in my neck and one in my arm. Hospital trained my husband to remove and to remove my sutures. Did have complications with white-hight fat content in my d4ainage. This can prevent healing of the area. Sutures-deep ones can cause a bulge that will go away in a few wèeks.

  4. I had the surgery (LNT) at the U of Chicago with Dr. Chang last May (2014).
    My leg hasn’t gotten smaller, but I do feel that I am able to be more active and after the healing process. There is a sense of less bulk…perhaps psychological, not sure. I am now looking to have the SAPL surgery done. Dr. Chang told me if I didn’t see the results I wanted, that SAPL would be the next option. There aren’t many of us who have had both procedures done, so, this network is extremely valuable! Thank you to Helen for keeping the information flowing! Good luck to you and God bless!

    • Hi Jeanie,
      What is the volume difference between your 2 legs? I asked Granzow about the liposuction, but he said there is not enough to take out that would justify having a second procedure. Did your insurance cover your first surgery? Will they cover the second one? Thanks..
      Cindy

      • My right leg is about 31-32%larger than my left leg. I don’t remember the exact volume measurements…I would guess12-15 pounds difference between the two legs….it’s significant. Have you had the SAPL procedure?

        • No, I haven’t had it. So it’s not fluid in your leg (no pitting)? Are you going forward with the surgery? I’ve heard great stuff about this procedure.

          • I don’t have pitting anymore in my right leg, which (from my understanding) is due to fibrous tissue and calcification of the lymph fluid over time. I use compression 24/7 and without it, my leg would be much worse. I know the compression is helping, it just isn’t ever going to make it better without removing some of the buildup of lymph fluids and solids that have accumulated in my leg over the past 18 years since I had cancer surgery. Insurance paid a good portion of the LNT procedure. I am working with dr. Granzow’s office re:insurance for the SAPL procedure. Insurance (knowledge and reimbursement) for reconstructive surgery after gynecological cancer surgeries isn’t as advanced as insurance reimbursement for breast cancer. I hope that thru education and awareness, the insurance community will understand that ‘quality of life’ issues are just as important for those of us who have lymphedema due to cancer and the removal of too many lymph nodes …and that these type of reconstructive surgeries will start to be covered by insurance companies.

            • Good luck to you Jeanie! Granzow’s office is great working with insurance companies. They helped me get my approval for my LNT. I don’t think anyone understands the quality of life issue. Only those of us who suffer from this unrelenting condition, truly appreciate how much our lives have changed. Do you have a surgery date?

            • The more we push the more the insurance companies have to cover this surgery in the US… In Australia we do not have this problem as it is covered so long as you have private health cover… But then it is not covered by medicare which is a problem for those with no private cover… Lymphoedema cause from surgery or primary should never be ignored or treated lightly… It is both a mental and physical issue.. Helen

            • Jeanie, I am strongly considering surgery with Dr. Chang in Chicago. I would love to email with you directly and ask you a few questions. I am at annwildman@comcast.net. For Lisa, the best to you! These surgeries offer hope and are encouraging, especially if you realize it’s going to take a little time to establish and do it’s work.

        • The Drs now seem to be more likely to to do the SAPL surgery if the leg is much bigger as thar usually means more fibrous tissue which will not change with a LNT as this only effects the fluid.. Dr Graznow seems to be doing the SAPL procedure and then maybe a LNT a year or more later… So far have not heard of someone doing this so do not know any results yet… Will be interesting to hear how you go … Helen

    • How are you doing now? I had the LNT last year and this year had lower SAPL done and hoping for more later (too much dead tissue and not enough time)

        • Wow! After reading thru all the posts, I am amazed how far the lymphedema surgeries have come in the last couple years. When I started researching this area about 6-7 years ago, there was nothing happening that I could see and not many success stories relating to long term lymphedema problems. Thank you to all the brave souls who have posted their results with the LNT, lymph bypass, and SAPL. And again, a very special thank you to Helen who has connected this network of pioneers. 😊👍
          My update is that I got approved from my insurance company just this week for the SAPL procedure, to be done by Dr. Granzow. We haven’t set a date yet, sometime in December or January is the goal. It took approximately 7-8 months for the initial request, the initial denial, the accumulation of supporting documents, the extremely well documented (and case study reviewed) appeal to the insurance company, the 30 day review of the appeal (by the insurance company) and now finally an acceptance from the insurance coverage. Ugh…..the process is extremely laborious and frustrating. I am thrilled that my insurance has finally agreed to support the next step….but it does require a great deal of patience to work through the insurance process.
          My LNT and bypass procedures were 18 months ago. So, I am very excited (and a little frightened) about this next surgery. The LNT and lymph bypass surgery wasn’t very painful, the recovery involved more leg elevation, wrapping and …again patience. I have heard the SAPL is a bit more painful. Crossing my fingers for minimum pain and a speedy recovery. (All the prayers and wonderful karma from the amazing pioneers on Helens blog are always greatly appreciated! )😊
          Sending lots of positive encouragement to all those who are faced with this chronic and disfiguring condition. These new surgeries are helping us and we are becoming more informed every year. Thank you to all of you who have posted your surgery results….and once again special kudos to Helen!

          • Thanks so much for your response… Did Dr Graznow help with the supporting documents? From what I read of others he is getting good results and his patients are very happy … I am interested to see the combination if LNT and the SAPL process to see if that then maintains the leg better after the liposuction. I hope you will write about your experience with the SAPL process as I would love to create a post from this … You can email me at helenbrd@bigpond.net.au so far i have not had someone share this experience for me to create a post …. I have heard it can be painful after but that this settles down as the healing progresses. I wish you well with your next step this journey to improve or cure your lymphoedema … As you say the surgery and its success is growing but much patience needed to see results. Thanks Helen

            • Dr. Granzow’s office was very helpful with putting supporting documents together to send to my insurance. He included his recent research as well as other research. I will let you know how it goes! Cross your fingers for a positive outcome!

  5. HI Lisa,
    I had a LNT two years ago in NYC. My surgeons were Dr. Vasile and Dr. Becker. My lymphnodes were taken under my left arm, below my armpit and transferred to my left ( lymphedema) leg. An incision was made about two inches above my knee which was two inches to the right. My incision was about five inches in length. I stayed overnight in the hospital and was discharged the next day. I had a drain in my arm and one in my leg, they were in place for about a week. The drain in the leg had to stay in longer. There is nothing you can do to prepare for the drains, just follow the post-op directions. You will have to measure fluid in each bag which is attached to your arm/leg and then measure in a little plastic container. It really doesn’t hurt and is easy to measure. I was happy post surgery, but my leg became swollen post surgery. I had to be patient and hope and pray for the best outcome. My physician reminded me that the final results can take up to two years. It has been two years and I do believe it helped but by no means have I been cured. I would encourage all who have this unforgiving disease to experiment with the LNT, because each one of us is made differently and will react differently to the LNT. You could be the one who gets the best results, so I encourage you.

    • Thanks Lori… Did you have some liposuction done too at a later?? Like you i feel it is not a cure but it does help… My leg is in much better condition and no infections which for me is important… So true too that everyone is different … Helen xx

  6. Hi everyone! It’s so good to hear from all you! Thank you Helen for posting my info. I ended up not having the LNT surgery BUT did have more lymphovenous bypasses done. When I met with Dr. Nguyen the Friday before my surgery he told me that if he could get just one good connection he felt like he could get me the same results as LNT but he wouldn’t know until he got in there. (He went back and reviewed the video of my first surgery in 2013 at MD Anderson so I’m thinking he saw something he could work with and just do bypass.) So I went into surgery not knowing if I would have LNT or just the bypass surgery. 😁 He was able to get 4 bypasses. One he said that was really good, 2 more and then 1 that he thought was just ok. I do see a difference in the size of my leg especially around my ankle. He was able to get 2 of the bypasses in just one incision so I only have 3 small incisions. My surgery was about 4.5 hours and I went home the same day! Just had some minor pain but that was it and same as the first surgery. I highly reccomend Dr Nguyen at MD Anderson in Houston. If anyone has any questions please email me at lrringo@hotmail.com. Love to all my lymphedema sisters! 💟💟💟

    • That is so good to hear that you are already seeing some results and a much easier surgery than the LNT… Great news … Keep us posted as to how your leg is after a few weeks … Take care Helen

  7. Hi Everyone:

    I am having a LNT with Dr Chang on December 9, 2015 for my right arm and hand lymphedema from breast cancer treatment. It’s very swollen, fibrotic and hard. I go to the ER about 3-4 times per year with a rash and/or cellulitis. Since he was one of the pioneers of the procedure I am flying to Chicago and staying for a week (I live in San Diego). I’m excited and scared about what to expect, scars, and results. Any feedback and support the community here can provide it really appreciated!

    • Dr Chang has a good reputation so you are going to an experienced Dr… Try to get your arm as small as possible pre surgery and follow all post surgery instructions .. A LNT will help to remove fluid from your arm but it will not remove fibrotic tissue… You should as Dr Chang about this … Also remember that the LNT does not work immediately and it can take a year or mire to see results till the nodes start to grow.. Dr Chang sometimes combines a LNT with a LVA… Lymph bypass to get quicker results … Remember to ask your dr all the questions you may have ..he is the best person to give you info … As a patient I can say you need patience to see results and follow all pre and post instructions .. Good luck and let us know how you go …. Helen

  8. In December it will be one year since my LNT with Dr. Granzow. My leg continues to look and feel good. When I wore a lighter compression garment I noticed some pitting in my ankle, or maybe I noticed a little pitting because I pushed much harder than I usually do. It is hard to separate the psychological and physical aspects of lymphedema. My PT here in Vegas thinks my leg looks and feels amazing. There is a real scare factor involved when trying to let go of wearing my Elvarex. I keep hearing about people combining a LVA with the LNT and wonder if I should have had both procedures done. Dr. Granzow is very conservative in his approach and believes less is more. He did mention doing the LVA at a later date, if necessary. I’m pleased that I no longer wear nighttime compression, thrilled that I was able to wear ankle boots for the first time in years, but would still like to wear a thinner stocking. As other have stated, the full benefits could take up to 2 years. I do understand that this isn’t a cure for lymphedema.
    The insurance aspect of getting these procedures done is frustrating. The length of time involved is unacceptable. I’m guessing they are trying to wear you down and have you give up! I have accumulated so much paper work since having this procedure done!!!! I seriously need another room to store all of my documents.

    • Over time you will experiment with your compression … Even if you just try for a day with a circle knit or non!!! I find that if I go without it can swell a bit but it goes down overnight and the next day it goes back to normal with a stocking on… I have given the thick Elvarex away and only wear a circle knit 30-40 but it is quite thin … I buy it off the shelf from Ames Walker who have various brands including there own which are much cheaper. They also have a flat knit black stocking which is great in winter… They have size charts you just have to know your measurements … I guess that I was able to do this from the two year mark but everyone is different … Stay patient you are doing well … Yes ankle boots yeh … I bought some yesterday that buckle all the way up from toe to ankle … I need this to get my toes in straight or they curl under due to the paralysis… I love them …i have also ordered the vibram shoes and boots that velcroe on http://www.hanigs.com/womens/vibram_furoshiki.aspx will see how they go … As we know shoes are always a bit tricky … Take care Helen

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