Meeting with Dr. Becker next Friday

HappyTrisha

Okay, all of you peeps, even ones with LE of the lower limbs. You want to take a look at this!!!!!

I am guessing this is the same as lymphovenous bypass, just using different words. (Any medical types can help out here because the article is extremely technical.) Definitely check out the pictures in this one. This has definitely made me decide to look more into the lymphovenous bypass, especially because it is supposedly less invasive.

The name of the article is Microsurgery For Lymphedema: A Real Possibility of Cure, by Corradino Campisi. So if you Google it, you'll know you have the correct article if you see the name of the author (well one of the authors).

I think you're going to be amazed by the pictures alone - the before and afters, not the pictures of actual surgery, yuk!

Please let me know what you think!

HappyTrisha

Not sure what the font stuff is about, except that I did a cut and paste and tried to make the print smaller.

HappyTrisha

I just wrote to the author of the article to get more information on the procedure and to find out if it's being performed in the US, and if so, where. I'll report back.

(anyone know where our emoticons disappeared to?) Mine aren't showing up anymore!

Linda-n3

Happytrisha, thanks so much! The photos are amazing! Please let us know if anyone in the US is doing this procedure. Although I am stage IV, I could still live many years, and I really don't want to spend all my time dealing with LE if there is a viable alternative!

HappyTrisha

Linda, I've emailed several of the authors and also my PS to see if he knows of any doctors doing the surgery. I also found a doctor in Utah listed as the first in Utah to perform the lymphovenous bypass and I've emailed him (Dr. Robert Ferguson Jr.)! Dr. Marga Massey also mentions it on her website but I believe she will only take LE patients who are extreme cases and who have had no luck with traditional means. I don't fall into that category.

I will definitely let you know whatever I find out. And I'm with you. If there is something safe that can alleviate this condition, it certainly is much more pleasant living without the condition!

I would be thrilled in someone in my neck of the woods (RI) performed it but I'm not holding out great hope. However, I am not averse to travel!

hugz4u

Nordy. Thanks for checking in, I was getting a bit worried about yah. This lymph surgery stuff is so interesting. Hope you are still exercising like crazy!

kharimata

happyTrisha, thank you , I have read the report. The results look very nice, even with bilateral primary lymphedema.

There are many questions, for example: many of the people shown on the before and after pictures there le is more severe then in my case.

Both a lymfescintography and an MRI showed however that i have slow uptake, less nodes, less vessels (and very small ones that have not a good function). My legs are very thin, even more thin then people with 'normal' legs, but they are 2 cm different...

My surgeon and Dr. Becker told me that when there is nothing, there is nothing to connect. So the lymph-venous- bypass connects lymph system to vein system.

I wonder how they get this good results, because they have visible bigger problems then I have , but apparently they still have something from the lymph system that they can connect to venous system.

In my case, I have visible less signs, but both tests and both doctors told me there is nothing to connect. So they suggest to add something from the system: lymph nodes from another region.

It is a pitty that this is all sooooo expensive ( I have spend so much money to this problem already, including 3xweek fysiotherapy, stockings, wrappings, swimming and tests and trips to Paris) that another trip to Italy is out of the question for the moment. I would love to know however, what there answers would be...

Thank you for posting!

Concerning lnt: in the end of october I saw there will be another presentation of Dr. Dayan on livestream. I will post the link, when I can...

PinkHeart

Kharimata,

My heart goes out to you. I'm not surprised that insurance not covering LNT, but why not your physiotherapy?

I apologize if I have not remembered your story correctly, but will Dr Becker agree to do your surgery? Did she recommend a microsurgeon in your country or USA?

kharimata

Dear Happy Trisha, luckily my insurance covers my physio ( do this already for 10 years) but not totally. So if you count 10 years, 3 times a week... it has cost me a lot, even though i consider myself lucky that I do not have to pay the whole bill!

Dr. Becker agreed to do the surgery. I am still waiting for aproval of my insurance company... I can do it in my country and it would be less money, but I would feel more comfortable in Dr. Beckers hands....

Nordy

The bypass surgery is being done at MD Anderson, Dr. Nelligan at University of Washington and Dr. Jay Granzow in southern California. I don't know of anyone else out there that is doing them. Dr. Nelligan has been doing that procedure since 2009.

Nordy

Most of the papers written on VLA are by Dr. Campisi in Italy.

Linda-n3

Nordy, are you talking about lymph node transfer or lymphovenous bypass? I have looked at Dr. David Chang's video, he is at MD Anderson, I think - he is doing the bypass surgery. I have asked my BS for a referral for evaluation, will keep you posted.

HappyTrisha

The thing that makes me a little uncomfortable about MD Anderson is that they seem to be doing a variation of the surgery. And I'm not sure that the variation is as successful as the surgery written about in the Campisi papers. Dr. Feguson in Utah seems to be doing the surgery that is written about in the Campisi article. At least I think he is. It's all a little confusing to me.

kharimata

Hello,

There is a doctor in Belgium who does the same thing like Dr. Campisi, and he was trained by him. He says even after lva it is necessary to wear stockings all your life... The reason for me to do a surgery is to be at least some days be without this **** stocking...Maybe the other doctors have a different protocol?

HappyTrisha

kharimata, from Dr. Campisi's article, it seems that you don't have to wear compression garments the rest of your life. At least that's what I think it said. I'm going to have to read it again. I'm going to look more into his clinic, etc. If I had the money, I'd fly to Italy and have it done. I'll let you know what I find out!

Linda-n3

Dr. Chang states also that you have to continue using compression the rest of your life. He says a very rare case might get by without it. I am going to see him this month in Chicago just to check it out. I may not be a candidate anyway, but won't know unless I go see him. He has trained 4 others to do this procedure at MD Anderson. The thing is, my LE therapist seemed to think I might be able to get by without garments at some point anyway for at least a little bit at a time, so I am going to be VERY careful in how I proceed.

HappyTrisha

Linda, I am a total novice at this stuff. I just reread Campisi's article and found these two quotes:

"Clinical outcome improves the earlier microsurgery is performed owing to absent or minimal fibrosclerotic alterations of the lymphatic walls and surrounding tissues. Subjective improvement in our experience was noted in 87% of patients. Objectively, volume changes showed a significant improvement in 83%, with an average reduction of 67% of the excess volume. Of those patients followed-up, 85% have been able to discontinue the use of conservative measures, with an average follow-up of more than 10 years and average reduction in excess volume of 69% (Figs.4-8). There was a 87% reduction in the incidence of cellulitis after microsurgery."

"This therapeutical association proved to supply the best and long lasting results combining the efficacy of non-operative methods with the results of microsurgical procedures and giving the patient the possibility to wear compression garments irregularly at the beginning and also to avoid the use of stockings and sleeves in the long run."

That's one of the reasons I'm a little uncomfortable with the surgery performed by Dr. Chang and some others. From what I can figure out, they are using a variation of Campisi's surgery. Could that be the difference? I too am being extremely careful in how I proceed. I wish I had someone to talk to about this so that I could totally understand it. I'm doing my best to try to understand the medical terminology and what all of it means! Please keep us posted on what you find out. I wish Dr. Campisi came to the US to train surgeons, the way Dr. Becker does. Then at least one could have a consult and ask the relevant questions to the man writing the article!

Linda-n3

HappyTrisha, I will ask Dr. Chang where he learned the technique.

I think the comments from his article pretty much say the same thing that Dr. Chang says, but says it with a positive spin ("giving the patient the POSSIBILITY of " using garments less or not at all) but Dr. Chang is more conservative in his approach, letting people know they may indeed need to continue wearing garments as they will always have LE (same as what Dr. Camprisi says in his papers), but Dr. Chang also acknowledges that a FEW people may NOT have to wear garments ... I think he just doesn't want to make people think they will never have to wear them again at some point.

If anyone here thinks of any additional questions I should be asking Dr. Chang when I see him, please let me know! The more I know, the better and more informed decision I can make (that is IF I am even a candidate for this procedure!).

HappyTrisha

Linda, thanks. I will be interested in hearing anything you learn from Dr. Chang. You might ask him what he thinks/knows about Dr. Campisi's surgery.

Knowledge is power. The more information we get, the better. I really hope that you like what you learn and that you end up being a candidate!

About wearing the garment. If I was told I had to wear it once or twice a week, that wouldn't bother me. I just don't want to be a slave to it every day.

carol57

Linda, many of us are watching the surgical developments with great interest, and no small amount of trepidation. Wow and double-wow to those who take the big step and try a surgical solution. I would not be that brave! One of the biggest concerns that many of us have is that the community of surgeons performing LE-related surgery is not doing so very transparently...there's no seeming platform to track patient outcomes on a long-term basis and pool information about results, and then make that information available to patients, researchers and other surgeons and healthcare providers. So, you could do us all a great service if you ask Dr. Chang about his follow-up and his protocol for sharing his patients' results so that others might benefit.

I know that your meeting with him needs foremost to focus on your needs, and I would not be at all surprised if Dr. C responds well...cool-ly to a question about patient outcomes and tracking. But if you are comfortable asking about this, I think there are many LE patients who would be quite grateful to learn of his answer.

As a member of NLN's Lymph Science Advocacy Program, I have been fortunate to hear several surgeons' presentations and to watch a debate on this topic (surgeon 'for' and surgeon suggesting restraint). I've asked Dr. Massey and Dr. Granzow questions about patient follow-up and data sharing, receiving the brush-off in return. I'm not sure why they're on the defensive about this, but they are (I've never met Dr. Chang nor seen him speak, however).

Knowledge really is power, as Trisha says, and women should not have to speculate about outcomes such as the nature of garment wear/frequency following surgical treatment. Certainly there have not been enough surgeries of the various kinds to have statistically valid predictive models, but my gosh, the information should be much more solid than what we're grasping at here.

Best wishes on your meeting, and I sincerely hope that you are pleased with what you learn and that you can confidently make a decision as a result!

Carol

kharimata

Dear Carol

I am totally share your idea about this. I think it is just so hard because: there are not many surgeries performed yet, by different surgeons, with different patients and lymphedema that is so different even on day to day with the same person ..., with different pre- and post op protocol... that this is just a mission impossible to put it into clear data.

The huge problem I think is the lymphedema on it own... showing in different ways ... from day to day. But to me I guess, the presentation of Dr. Dayan is quite honest...

http://lymphaticnetwork.org/news-events/breakthrough-in-lymphedema

I have read so many studies, asked a lot of doctors like you did and spoke with many patients who had surgery done by different doctors. He is to me one of the first doctors who makes effort of a transparant presentation, and tries to give a clinical presentation of le surgery. Luckily there is a doctor who is also interested in tracking everything, developing strategies to have the best outcome with the Reverse Mapping Technique,...

And he is quite honest I guess in answering questions... I have send many and like you said there aren't many who answer... I ask my questions and they send me how much it is for a consult as a reply LOL

Dr. Dayan however took the time to answer some questions... very rare!

I guess only in ten years we will know

Until then we have to find the answers unfortunately ...

Helensamia123

I am continuing to write my blog and to gather as much info as possible re surgeries for Lymphoedema.. I am part of a research program in Australia but I think it will be a couple of years to see results as it takes that long for nodes to grow.. In Australia they are doing LNT and liposuction for more difficult cases.. I have to say that all the people I have contact with, world wide with various doctors, no one has thrown their compression away yet!!! For legs it looks as if two transfers may be needed as it is a larger area than the arms.. If anyone would like to share their surgery story with me, so I can create a post, that would be great please email me at

helenbrd@bigpond.net.au

This way we can create our own much needed info base where people can find out what surgery is like from a patients point of view...

For me 8 months after surgery I wear a 30-40 compression stocking during the day and non at night.. My lower leg looks good the thigh could be better.. When I had the Lymphasytagraph 6 months after surgery, the tracer moved up my leg 20 minutes faster than pre surgery.... It is a slow process but I hope the nodes will grow but as they are placed in the knee I do wonder if they are needed in the groin as well... The scar on my neck where nodes were taken has nearly disappeared.. So yes I still have Lymphoedema but at this stage easier to manage but a long way from a cure!!!

This is the link to my blog with latest updates which I will keep adding to as the months and years pass by..

http://lymphnodetransplant.wordpress.com/

Binney4

Helen, thank you for undertaking this collection of surgery stories. It's really an important work you're doing, and I hope those with experience will participate with you. I'm hoping for real healing for you, and for new knowledge that will make things better for all of us!

Gentle hugs

Binney

Helensamia123

Thanks Binney ..... It is a real loss that research and records have not been kept by Dr Becker that we can access... Everyone is an individual and results are different for everyone so it is difficult to make comparisons with the various surgeries... Post surgery care is what most if us were not prepared for... The bandaging and MLD the first few months... Anyway this is an ongoing story and if others will join me that would be great.. Hugs to you to Binney...

HappyTrisha

If we didn't have pioneers who were willing to brave the unknown, we wouldn't have settled the west. Not everyone is suited to be a pioneer. Being a pioneer isn't always a good thing, granted. But someone has to do it!

I don't judge anyone at all who wants to wait until enough information is gathered before doing anything. That's nothing but intelligent. I guess I've always had more pioneer in me than intelligence.

I've been in touch with Dr. Campisi. He wants me to send him a variety of materials to look at. He ended his email with "I know we can help you." I like that confidence, especially since it's backed up with experience.

So I waited to find a Dr. in NY because I didn't want to travel to South Carolina. Dr. Campisi is in Italy. Yes, there's something wrong with my head! Anyway, it will cost me nothing at this point but several more emails. I'm sure the price tag alone will be the end of it. I can't imagine my insurance company paying for a trip to Italy!

I'll keep you all posted. At this point I have to say, though, that I'm happy that for whatever reason I never went through with my VLNT, though it was definitely my intention to do so. This surgery is supposedly less invasive, and I like the thought of everything being done in one spot, without potentially aggravating another area. And there are doctors doing in right here in the US. I know that the doctor in Utah does the same surgery as Dr. Campisi. But you always like to look to the one who actually invented the thing!

Linda-n3

I don't know if I posted this link before, if so, I apologize for the duplication.

http://m.youtube.com/watch?v=35JlSdsDzbU&desktop_uri=%2Fwatch%3Fv%3D35JlSdsDzbU

This shows the microvascular surgery, and Dr. Chang answers questions. I think he paints a relatively realistic picture in some respects, such as reminding patients they will not likely be able to ditch garments but should get better control, but in other respects a little too optimistic in that it seems according to his patient outcomes, most people get SOME benefit. The question I will have is just how much benefit vs. how much extra care I will have to provide to this arm, which to me is a big cost. My goal is to reduce the amount of time and energy I have to spend taking care of my arm, period.

The other thing I think about is how much time and effort it takes to go through yet another procedure, including travel (which takes time and precious energy) and money and followup and "being a patient" (which I am truly SICK OF BEING!!!). I have local/regional recurrence and mets, so part of me thinks "why bother, I probably won't live long enough to get lots of benefit anyway" and the other part of me thinks "geez, I am probably going to live at least another couple of years as everything is stable for now, and haven't I earned the right to have a palliative procedure that might improve my quality of life for the time I have left?"

And so I am going to invest the time and energy for consult, learn as much as I can, and think long and hard. In the meantime, I am getting low level laser therapy, following the protocol from a pilot study that showed improvement with arm volume and function. I don't remember if I posted anything here about that as this thread is mostly oriented toward surgical approaches.

Helensamia123

This is a link to a lady who went to Italy I wonder if it is possible to get an update now???

http://leglogs.blogspot.com.au/

There is also another that comes up on google search but non continue after a while ... I do note that there seems to be a huge follow up program. I wonder where this lady is at now??

Helensamia123

The is another link too

http://lymphedemamicrosurgery.blogspot.com.au/p/how-to-become-patient-at-campisi-clinic.html

Both these links are for legs but I know that a lot of arms are done too...

HappyTrisha

Helensamia1, thanks for those links! I'm going to go and read through both!!

Linda-n3, this pioneer also had low-level laser therapy! And it was extremely effective. But I am always looking for bigger and better. So I keep heading west!!!

Helensamia123

HappyTrish... I have had laser too when I have had bandaging done.. I think it helps but hard to tell.. My therapist also used a hand held laser on the scar tissue after the surgery where nodes were placed in knee.. It is supposed to stimulate the cells.. ie. stimulate the nodes to grow!!! Trouble is it is hard to measure outcomes as you have no idea what it would be like without!!! There is also another lady taking about her year and a half spent in Italy having surgery with Dr Campisi!!! Will put the link up for that too... She was an Australian lady who just stayed there!!!!