Meeting with Dr. Becker next Friday

HappyTrisha

Well, I got to correspond with the first patient!  I did a basic Q and A format, via email, and she said I was free to share the information.  I asked all the questions I could think of asking as a potential candidate for the surgery.  If you can think of anything else you'd like me to ask, just let me know.  She was happy to share information and I'm sure she'd be happy to continue.  I will separate the questions from the answers by using bold - or a diffferent color - or something!   Before the Q and A I will copy what she said about her background with LE

_________________________________________ 

Hi Trisha! I am glad you asked all your questions and if you have more feel free to ask away!! I am going to answer each question has you listed them. My case is different because my lymphedema is in the right leg and it got so out of control that the leg became deformed. I gave up hope a long time ago but because my oncologist found Dr. Vasile I said what do I have to loose!! Not only did they do the lymph node transfer they removed alot of tissue to reconstruct the entire leg. My leg now is just about the same size as my other leg which never had lymphedema in it!!! My leg weighed over 75 lbs before and walking was very difficult but now it weighs the same as the left and walking is great!! Let me know if you have anymore questions or concerns!! I have been helping out alot of people with this horrible disease!! You can share my story with others! I hope spreading the word about this surgery can help anyone feeling alone like I did!!

1.  Who did your surgery?  Was it just Dr. Vasile, or did Dr. Becker assist?  Or did Dr. Becker do it?

Dr.  Vasile and Dr. Becker along with 2 other surgeons preformed the surgery

2.  How long have you had LE, what caused it, where is it?  And was it a mild or severe case, or somewhere in the middle?

I have it in my right leg for 20 yrs due to Stage 3 Melanonma and it was extremely severe

3.  How long ago did you have your surgery, and where?  (for example, in NY?)

First surgery March 13,2012. Second surgery July 2,2012 NY Eye and Ear Infirmary

4.  Was your procedure out-patient?

NO

5.  How long were you under?  (Anesthesia scares the life out of me.)  Did you have any trouble coming out of the anesthesia or did it make you sick?

first surgery 9hrs, second surgery 7hrs. no problems at all

6.  If your surgery was out-patient, about how long were you there after surgery before they let you go home?

you must stay at least over night I was there for 5 days(my case is very different)

7.  What part of your body did they remove the nodes from?  Have you had any swelling at all in that part of your body?

first surgery left groin area transfered to right groin area. Second surgery left armpit area to right knee. No swelling in donor sites

8.  If you're not from NY, how long did you have to stay in the area before you were allowed to go home?  Did you have to go to Dr. Vasile the day after surgery?

I am from Long Island,NY but do to my case I stayed at the Mircale House in Manhatthan(I can give you more info
later)

9.  Did you have drains, and if so, how long were they in?

First surgery 3 drains for about 2 weeks/ second surgery 3 drains 1 week

10.  Were you in pain after the surgery?  Is there discomfort?

my case is very different so yes there was pain but talking to other patients they did great after surgery, one didnt even
take the painkillers given

11.  Are there things you have to do for any period of time to help with the situation - have massage, wear special garments, etc.?

I had to start lymphedema therapy and compression wrapping in Jan. to prepare for first surgery, 1 week after surgery in March went back to therapy( it felt great to be wrapped) got fitted for new compression garment then before second surgery did another 2 weeks of therapy had surgery and then went back right after for another 2 weeks of therapy. I am just now wearing the compression garment but I am wrapped at night

12.  Now for the million dollar question - did it work?  Has your LE resolved, and if so, did you notice it immediately?  Did the doctors say how long it could take to resolve completely?

in my case YES it has worked, the new nodes can take up to 1 year before you see if its completely resolved

13.  Are you glad that you did it, and given the choice, would you do it over again?

I am extremely glad I did it!! I  already did it twice and my third surgery will be November so yes I would do it
over again!!!LOL

 

Anonymous

Trisha- Thanks for sharing!  Sounds like lymph node transfer was a miracle for her with her LE so severe.  So happy for her!

HappyTrisha

Kate, it definitely does sound that way!  Once I find out the results of my MRI and verify that they can use nodes from my groin area, I'm signing on.  Fingers  crossed.

  

Dejaboo

Thanks for sharing Trishia.   Hope your MRI results show usable nodes

PinkHeart

Trish

Good luck on your mri. When is it?

Many thanks to this kind LE patient for sharing her story too and that surgery has been so life changing for her thanks to these surgeons.



My LN transfer is in 12 weeks. This thread and others is a huge help to me

kharimata

Thank you so much for posting it!

 As for me I am considering to wait till next year for this procedure, as I am still recovering from a lympho venous bypass. Only in six months I can see the results... After the next summer I will see how it is... I have it in both legs and primary so that makes it more complicated I guess. 

But when I still have big problems, I will for sure do this LNT. I hope in the next year more topics will come on this post with people who did it and can say one year later what the results are....

So to everybody: thanks for sharing your experiences!

Greetings!

If you could get more info on the girl in my situation (primary in both legs) it would be really helpfull!

HappyTrisha

PinkHeart, I already had the MRI.  I'm waiting for them to tell me the results.  Dr. Vasile did tell me it could be up to two weeks.  If I haven't heard anything by the end of this week, I'm going to give them a call.

kharimata, would you believe that I heard from the woman this morning?  Unfortunately at the time she called I wasn't able to talk, so I will be calling her back this afternoon.  I did get to ask her how she's doing and she said she's doing great.  Will post more as soon as I hear from her.

HappyTrisha

We played phone tag today.  When I called her back she wasn't there but I did leave a message.

And so I wait.

HappyTrisha

Still haven't heard back from the other woman so I will give her a call tomorrow.  Also emailed the doctor's office to find out the results of my MRI and how the nodes in my groin are looking!

Will feed back when I get responses form either!

 

HappyTrisha

More phone tag!  

PinkHeart

HT~ I thought you might find this "Ask the Doctor" question of interest as it relates to LN transfer surgery.  Would be curious as to where this patient had her surgery . . .

http://breastreconstructionnetwork.com/complications-from-vascularized-lymph-node-transfer/

HappyTrisha

Well I finally heard from one of them.  I talked to Dr. Vasile today and it seems that the nodes in my groin are alive and well.  Therefore I will be signing up for the surgery!  I won't have it, however, until after the holidays!

Still waiting to hear from the woman in Ohio.  Will try calling her tomorrow.

HappyTrisha

I thought I posted something but maybe I didn't hit submit!

I contacted the woman in Ohio today and left her a message.  I also gave her my email address so I am hoping that she just emails me, rather than our continuing to play phone tag!

HappyTrisha

I thought I posted something but maybe I didn't hit submit!

I contacted the woman in Ohio today and left her a message.  I also gave her my email address so I am hoping that she just emails me, rather than our continuing to play phone tag!

HappyTrisha

Just got off the phone with the woman from Ohio!  What an upbeat person she is!  Her LE is primary.  It seems that she was born without lymph nodes in one of her legs and with only a small number in her other leg.  The LE showed up about 15 years ago.  Of course she had no idea what was going on and went to doctors where she lived.  Nobody could figure it out so they told her to take diuretics and use compression stockings.  She said she feels this whole thing was from God because the way she found out about nodal transplants was watching Grey's Anatomy!  The episode was about a woman who had breast cancer and developed LE, and the surgeon did a nodal transplant.  (How funny and current is that!!!)  So she immediately went on the internet and started researching nodal transplants.  She said she emailed a number of doctors but Dr. Vasile was the only one who even bothered getting back in touch with her.  From there, she went for her consult, but prepared for surgery if she decided to go ahead with it.  She needed to have an EKG, a chest XRay, and have blood work.  She did all of that in Ohio and took the records with her.  She said that it was even a miracle that the surgery happened because there was no hospital time available but the doctors managed to find time and space in one of the NY hospitals.

She has had two surgeries so far.  She said that with the first one, she didn't have any pain at all and didn't need to take any meds at all.  They used nodes from under one of her arms and patched them into her groin area.  She stayed in NY for approximately three days.  She had to wrap and have daily therapy for one month.  After that the therapy was cut down, and I believe she has to wear a compression garment at night.  Her second surgery was to take nodes from her other underarm and patch them into her thigh.  She said that one set of nodes deals with the lower leg and the other deals with the upper leg, that's why she had to have the two surgeries.  She will be going back in November to have a final surgery.  With her other leg, the swelling is only in one part and so she only needs to have one set of nodes transplanted.  They will take the nodes from her neck this time because they do not like to remove nodes from an area where they've already taken some.  She is fine with that.

She said that the doctors told her not to be disappointed if she didn't see immediate improvement because the vessels have to grow and it can take up to a year for things to totally function.  She said that her calf is "jiggly" where before it was hard as a rock, so she is very excited.  And that surgery was only done three weeks ago.  So it seems that it is working.

She absolutely loves Drs. Vasile and Becker.  She said that Dr. Becker's eventual goal is to build some kind of center in the US where doctors can be trained in the art of nodal transplant.   

She said that if I had any more questions I was free to call her at any time.  We're also going to exchange email addresses so I can always email her any questions.  So if there is anything else anyone wants to know, just let me know.

Well, that's all the news that's fit to print!

proudtospin

Trisha, that all sounds so promising for all folks with this issue

hope all works for you, thanks so much for posting your experiences

natalie2610

as I primary my self ...this all sounds too good to be true....hopefully I will be wiser when ill meet Dr. Becker myself in November , but very optimistic thanks to ur post Trisha

Anonymous

I saw that episode, too!  First time I've ever seen any show address LE.  I had just got dx and it was pretty shocking seeing the size of that woman's arm on the show.  (Great special effects!)  So happy for that patient and really hope things work out for her.  Thanks for sharing, Trisha!

natalie2610

p.s my sister told me about this episode , its a good thing lymphdema is adressed this days....i have a true great feeling this could be it....hopefully its the same for all of us...keep us posted Trish

PinkHeart

When I told/showed my teenage daughter about my LE issue, she said she already knew about it from watching that episode, too!  Was it a patient with primary LE, or a breast cancer patient?

Anonymous

It was a BC patient who had severe LE in both arms.

proudtospin

I wonder if I could find the episode to see it on maybe Hula?  gonna search it tonight

would be interesting to see it  

HappyTrisha

Here it is!  I've never watched Grey's Anatomy, so I guess they have multiple things going on in each episode.

If the link doesn't come through, it's Season 8, Episode 15.  ABC has all of the videos from the season.

http://abc.go.com/watch/greys-anatomy/SH559058/VD55172223/have-you-seen-me-lately

natalie2610

True inspiration this episode...so just to let u know , Dr Becker will be landing in Israel on the 9th of November

So i will be meeting her during that week

Off course I will keep u informed afterwards to how's it been and what I found out

 Keeping my fingers crossed

HappyTrisha

Funny how our PMs and posts keep crossing!  I wondered if Dr. Becker was coming to Israel or you were going to NY!

Boy she's one busy doctor!  She's doing such good work for LE patients.         God bless her.

 

HappyTrisha

Very informative Q and A session with Dr. Becker on the Talk About Health website.  You can submit questions and she will answer them:

(Corinne Becker, MD, is a plastic and reconstructive surgeon from Paris, France. She has pioneered microsurgical lymph node (LN) transplantation.

Dr. Corinne Becker has done 4,000 lymph node transfers in the treatment of both upper- and lower-extremity lymphedema over the last 20 years in Paris.)

I just had a 40 lymph nodes removed and am seeing early signs of lymphedema (early edema, productive seroma). Am I eligible for a lymph node transfer?
Yes. Patients patients who have had a significant number of lymph nodes removed and are seeing early signs of lymphedema are candidates for lymph node transfer. I have performed numerous procedures in these cases.

The next steps for you would be to have a consult with a lymph node transfer surgeon to review the details of your specific case. 
1 Answer | 25 days ago 

What is the recovery process like after having a lymph node transplant? How long will I have to stay in the hospital?

After surgery, you will stay 24h to 48h in the hospital. I suggest to stay quiet 10 days (real microsurgery, hematoma to be avoided). 
1 Answer | 2 months ago 

Are there any doctors in Australia that do lymph node transplants for lower extremities?
In Australia, no one is doing this procedure. They were doing lymphovenous anastomosis, but certainly not for those indications. It is a logical approach to replace the lacking nodes in the fibrotic area. It is like a new road! And the nodes will fight the infections!

Come to see me in Paris or NY, if you can.

Try to do bandaging and send me photos and documents.
1 Answer | 2 months ago 

Can you talk about the different techniques for lymph node transplantation as practiced today by micro surgeons? How do they differ?
There is only one technique: a free vascularised fatty flap containing nodes. Till now, 3 donor sites: neck, thoracic, upper inguinal. 
1 Answer | 2 months ago 

What is autologous lymph node transfer?
This is a transplantation.

One has to look for a unit containing nodes. Anatomic studies show that several regions of the body contain nodes (nourished by artery and vein) that can be removed without disturbing the body or the drainage of the legs or arms.

This nodes can be dissected on the vessels, then disconnected and reattached in the recipient area to similar vessels.

The transplanted nodes are living. 
1 Answer | 5 months ago 

What success rates have you seen with lymph node transfer?
1. Clinically:

98% of all the patients are improved.

Normalization in 40% of patients after 2 years after having moderate lymphedema.

Rate of infections: 2% remaining for all chronically infected.

80% of patients have diminished or stop physiotherapy, garments etc. Quality of the skin, color, elasticity thickness is 98% improved.

Perimetry decrease each month (1 to 10cm) especially the first six post op months.

2. Examinations:

MRI lymphatic becomes normal in 40% of the cases.

Lymphangioscintigraphy is showing uptake of the Tch in lymphatic vessels as well as new lymphatic vessels.

Echography of the fat is showing reduction of the water in the fat.

EMG of plexitis is showing stabilisation of the palsy.
1 Answer | 5 months ago 

How do you measure success of a lymph node transfer?
The patients are evaluated preoperatively by:
Clinic evaluation (survey, examination, measurements, photos)
Lymphangioscintigraphy (if MRI impossible)
Lymphatic MRI
EMG if pain

Postoperatively:
Clinic (survey, photos, measurements every month and after 6 months, each year)
Lymphangioscintigraphy after 6 months, 1, 2 years
MRI after 6 months, 1 year, 2 years etc. This examination is the best of all and allows us to follow the progress of the regeneration of new lymphatic vessels.
Echo of the fat. 
1 Answer 5 months ago 

What are the criteria for a patient with lymphedema to be eligible for a lymph node transfer surgery?
Criteria include:
Lymphedema resistance to physiotherapy
Chronic infections
Pain
Plexitis

Lymphedema appeared after mastectomy, adenectomy and radiotherapy.
Lymphedema appeared after extended hysterectomy, prostatectomy, lymphoma, tumors of the pelvic and inguinal region, melanoma.
Lymphedema appeared after saphenectomy, excision of fat in the inginal region.
Some congenital lymphedema (hypolplasic forms).
Breast reconstruction desire combined with treatment of lymphedema.

Now more and more young patients are suffering from lymphedema that can be normalized if the lymphedema is not too old and fibrotic. 
1 Answer | 5 months ago 

Where in the United States can a breast cancer patient with lymphedema have a lymph node transfer surgery?
To date, few surgeons are able to perform this procedure because dissection of the flap is very important, dissection of the axillair region can be very difficult after radiotherapy, and microsurgery must be perfectly achieved.

The most experienced surgeons in this field in the USA are fellows of Robert Allen, MD, with whom I am working. I come often to NY to develop a lymphedema center with Josh Levine, MD, Constance Chen, MD, Julie Vasile, MD, Rebecca Studinger, MD etc. who are also involved with the Eye and Ear Infirmary Hospital. The patients are seen by them, selected, and I come to operate with them, all together. The idea to create this center is very important. 
1 Answer | 5 months ago 

Does the lymphedema ever come back after the lymph node transfers are done?

No. If the results are positive after 6 post operative months, the progress continues, month after month, year after year. 40% of the patients acheive normalization of upper arm circumference from moderate lymphoedema after 2 years. The infections decreases dramatically but do not always completely disappear in severe cases.                                                                           

1 Answer | 5 months ago 

What are the common side effects from a lymph node transfer?
When we remove the external nodes near the iliac bone crest, a local seroma can occur, but preventive compression enables us to avoid it.

Lymphedema does not occur at the donor site, because the nodes taken are not in relation with the drainage of the leg or the arm. Knowledge of the anatomy of the donor site is very important.

The microanastomosis of the vessels performed under high magnification is difficult to perform. The vessels have a diameter of 1 cm. Thrombosis can occur if the quality of the vessels are poor (smokers, etc.). The microsurgeon must be very experienced.

If there is failure, no results of the surgery can be observed, and the illness continues. But there is no worsening due to this operation!
1 Answer | 5 months ago 

Is a patient who has had lymphedema for years still able to have a lymph node transfer?
Yes, for sure. Patients who have had lymphedema for years, even with alterations of the skin, chronic infections, and pain are excellent candidates for autologous lymph node transfer.

Autologous lymph node transfer may not result in complete recovery, but the improvement is dramatic in all cases. The number of infections decrease and the quality of life is much improved.

A couple of examples:

One patient I treated who had lymphedema for 20 years after mastectomy and radiotherapy had dramatic improvements.

Another patient was treated after 25 years of lymphedema from total hysterectomy and adenectomy with excellent results. 
1 Answer | 5 months ago

kharimata

Hello everybody,

I am not sure if this is allowed on this topic... But I would like to ask if somebody has done this procedure, and if it was possible to see some pictures of it... off course only from the limb and maybe from the donor site. What is a little bit strange I think is that over the world there has been 4000 lymf node transfers... but on the internet I can't see any pictures 'before and after'. I have read somewhere on another topic that the woman was surprised of the scarf on the donorsite , as well as the scarf and 'flap' on the site of transfer.

I can't find any information about this. You can also send it to me in a private message,

I would be really gratefull to you!

@ Happy Trisha... when are you planning to have this surgery? I wish you all the best, and I hope we could stay in contact afterwords!

Greetings! 

HappyTrisha

I hate to sound totally stupid, but what is a scarf?

Marple

A typo maybe.  scar

HappyTrisha

kharimata, my surgery isn't scheduled yet.  I intend to have it after the holidays, meaning anytime after the beginning of January, but I have to wait to find out what Dr. Becker's schedule is for 2013.  Once that is determined my doctor's office will let me know and I will set up my surgery.  There is an unknown in this for me and that is that when they took the MRI, although they found that I had adequate numbers of lymph nodes in my groin area, they won't know until they go in whether previous gynecological surgeries have done anything to the vessels in the area.  If they don't find a good-enough size vessel, they can't do the transfer because they won't go deeper than the surface vessels because that's when they can get into trouble with LE to the donor site.  They've asked if I want to have neck nodes taken if that's the case and I've said "no".  An MRI with contrast dye won't show the vessels because I guess MRI's just aren't powerful enough to show things that intricate, even with contrast.  So I essentially won't know whether I've had successful transfer surgery until I come out of anesthesia.

I'm keeping my fingers crossed.