Meeting with Dr. Becker next Friday

PinkHeart

Kate,



Are you doing your own wrapping for the 12 weeks of daily wrapping?



Can you wear a sleeve and glove during the day and a night sleeve to bed? Instead of wrapping



Was your arm swelling day before surgery? Was fluid moved out of your arm before being wheeled into OR?



How long is your recipient site incision in axilla? Do you have 100% range of motion?



My surgeon was not as intensive on orders for appts with my PT-CLT.

I saw his PT-CLT twice while there for surgery. (I had two surgeries at same time--Stage 2a of bilat SGAP and lymph node transfer surgery for a total of 7.5 hours).



I flew home on day 4 after post op appointment. I see my own PT-CLT only two times each week.



So far so good with LNT. Still have axillary cording/webbing which is evil and refractory to treatment.

kate727

Pinkheart, Will try to answer your questions! I don't do my own wrapping. Since I go for therapy every day, the pt does it. Usuallly I try to remain wrapped till Sun am shower. Then either I will wear a compression garment or my husband will help mewrap. But I never feel like I do it well.

Dr. Massey wants me to be wrapped rather than wearing the garments. I didn't have massage b4 surg but Dr. Massey wrapped my arm b4 surgery.Arm before surgery was same as it has been for a long time, Stable but still larger than other arm. Dr. Massey used insions I already had from reconstruction. I don't have quite 100% Range of motion but close, But it is same as it was b4 surgery. I had broken my shoulder a few years ago and did not get 100% range of motion after that.

So as far as your lymph node trsf what do you mean by so far so good?? Hasve you seen a reduction in your arm??

Thanks!

Kate

kharimata

Hello everybody,

I was waiting for papers to get the lymph node transfer in paris paid back... I wanted to have a lymfescintography done of my uppers arms. Doctors here thought it was not really necessary cus my arms are really totally skinny. 

But since I was so afraid of donor site le, i wanted it. 

After ten years with primary le in both lower limbs, one year with big problems in my one leg and searching all the doctors I could find... yesterday I heard even the worst news (although i thought that was not possible).

In the hospital, again, the doctors were so surprised: i have a lacking and especially very slow lymph system with very slow uptake and transport in ... both upper arms.

So aparently: i have slow uptake in my four limbs. Although you can only really see the problem in one leg. I have 55 kilo and I am 1m70. So I am skinny and sportive. There is really nothing at all to see in my both arms.

They say that normally you only have it in one, sometimes two limbs. And that my case is very strange because there are no visible signs...

I had a real panic attack, thinking of my future with all limbs getting wrapped up,... And also I think I can forget the lymph node transfer for my leg too.

Although I will send the results to Dr. Becker anyway and here what she is saying..

All i can think now is that aparently i am a ticking timebomb, and the soon something happens my other limbs will blow up. And this is really not a way to live with this constant being carefull...

HappyTrisha

Oh kharimata, I am so sorry to hear that!  That is really shocking!  Don't lose faith though because Dr. Becker can also use the lymph nodes in the neck, where I understand lymph nodes are plentiful.  So you may still be good to go with the transplant to your leg.

I wonder if others of us would end up finding out that our lymph systems were somewhat compromised if we had total lymphoscintigraphy.  Since both of your arms are thin, you would never have guessed it, right?  I'm happy you insisted on it though.  I will be interested to see what Dr. Becker has to say.  Does slow uptake automatically mean that you would never use that site?

Please keep us posted, and don't lose hope!  Again, they can always use neck nodes if you're willing to go that way.

Trisha

Nordy

Kate---I am curious to know how big your arm was prior to surgery? What was the difference in arm size? Did you have multiple episodes of cellulitis?

hugz4u

Oh Nordy I was just thinking of you lately and then again today. Nice to hear from you.

We need a bit of shaking up in the kick butt thread! Are you thinking of the node transplant?

Nordy

I am always thinking of it!



I am sure you guys are exercising up a storm! I have been so busy with my kids and my cute little niece who lost over 80 pounds has asked me to run a marathon with her in the fall. I have been training for that then was getting ready to wrap my arm three weeks ago and within an hour my arm went from nothing to full blown cellulitis. So every time u take a step forward, something happens to remind me that I am not invincible!!!

I hope you are well and that you have an exercise program that you love!

carol57

Nordy, I'm cryin' foul over that cellulitis!  So sorry to hear your plans were derailed like that.  Best wishes for a full and speedy return to your 'real' life, unfettered by LE/cellulitis crises.

PinkHeart

Nordy,



Your strength and encouragement amazes me. I'm so sorry to hear about LE flare up and cellulitis.



I've never had cellulitis. How is that treated?

Nordy

Thank you Carol and Pink. I required emergent IV abx followed by 10 days of oral abx. My hubby had just gotten home from AK that afternoon. It was such a blessing since I had to dr e myself to the ER at midnight! We don't have family in nearby, so I would have had to take the kids with me!

Helensamia123

Thank you so much to Kharimata for sharing my blog

http://lymphnodetransplant.wordpress.com/

As you see I have had a Lymph node transplant two months ago.it was to my left leg .. I had uterine cancer 11years ago. . I have felt very isolated in Australia as no one else here has had this surgery.. I to am doing regular MLD and wearing Ready Wraps that are like Velcro bandages .. I had not realised that I would have to do all this after the surgery.. 30 May I am to have a Lymph MRI to see if there are any viable Lymph nodes in the transplanted tissue as I had an infection after the surgery.. I am very distressed by this as feel all this may have been for nothing..prior to the surgery my leg was not very big and was not fibrous therefore I was eligible for surgery.. Has anyone else had infection after the surgery? How long has it taken to see improvement??

kharimata

Hello, 

Long time no hear...

Just a quick update...As you can read in my posts before, I had a lymphescintography of the arms prior to the (possible) lymph node transfer. I have this primary le in both legs, but one leg is -due to little injury- hard to control... So I am considering the lnt.

I had the lymphescintography done in both my arms, and as I told you in my recent posts, the doctor who had it done was not very optimistic. She told me that I have a slower uptake in both arms, less vessels, and less nodes... At that time I was very in shock. 

Anyway, I had another consult with Dr. B and she simply watched the pictures of the test, and she said: no problem....

I was a bit surprised, since the doctor here frightened me a lot with her diagnose. 

But Dr. B told me that the lympescintography is simply not a up-to-date test anymore. They should not frighten me, based on this test. She said: when you look at the lymphesintography of your legs, you would expect to see 2 huuuuge legs, but it is not like this. 

The MRI shows more details, and shows why you do not have huge legs. 

The system is working in your arms, slow/fast,... as long as it is working, it is fine...

Hmmm this was very weird: one day in the hospital they tell me this horrible news that I will develop problems in my arms too at one point...

The next day someone tells me : 'no problem'. .. 

She also told me the surgery is not urgent, I can see and wait what the summer does... And then after the summer I can decide. She said it is very important -psychologically- to know that there is an option for me out there, to get it better . This is very important because everywhere you read that there is nothing to do about it to get it better and that it will only get worse in time (she said this to my mother). So it is important to know that there is something out there that can make it better.

She also said very strongly that there is no risk at all to develop problems at donor site, and not at the arm since she will take them from breast/breathzone. 

So .... next I have to wait for the summer... Well , I am so tired of this now already, I do  not need to wait for the summer to know this... But it gives me more time to prepare for the surgery, although she said that (maybe in my case) it is only 1 night in the hospital, and one week at home from work. But I can walk (gently) on it the next day... And off course MLD,... and things like this , but in the end it is just all the stuff (MLD, taping, bandaging, stocking,...) I do now so no problem for me at all. 

Please tell me your experiences... it has been a long time people are posting on this topic. I really would like to know some updates from you guys!

Take care!

HappyTrisha

Kharimata, I just read your post.  I apologize for not getting back to people and for not being around.  I have had lots going on here and have been buried between my legal practice and family events.  I think I had mentioned that I was putting off having the surgery until I could get my weight under control.  If I had the knowledge and ability to take apart my physiology and get into intracacies, I could figure out exactly what I have too much or too little of.  I've read enough to know that there is definitely some malfunction because I constantly crave sweets.  Dopamine, serotonin, norepinephrine, something!  As a result, I've just had so much trouble taking off the weight I need to. 

And here's part 2.  I do not cook.  I will never cook.  I hate cooking.  And I am by myself (joyously!) and so don't have to cook.  So I rely on fast food.  Well I decided that something like Nutrisystem would be perfect for me.  It's worked for so many other people.  The fly in the ointment is that their diet is soy based.  I am estrogen positive and therefore have to avoid soy.   There are so many Dr. Oz things that come down the pike (Raspberry Ketones is one) that people have had great success with.  I had actually started taking the Raspberry Ketones and my clothes were starting to hang on me - and accidentally happened upon an article that said there was a possibility that RK could stimulate estrogen.  I immediately stopped the RK and the clothes tightened up.  I avoid anything that is an estrogen stimulant.   I am extremely vigilant in reading all of the ingredients in vitamins, minerals, and the like, and if there is any component that stimulates estrogen, I stay away from it.  The same with OTC diet products.  I swear that every single one has at least one component that stimulates estrogen! 

So last night, out of desperation, I paid for and downloaded two self hypnosis tapes:  one is "Lose Weight Quickly".  The other is "Stop Sugar Cravings".  I definitely believe in hypnosis so maybe these can help out.

I still hope to have the transplant, and I still hope that I am a good candidate when that day comes.  I know that they say the best success is for people who are more recent LE sufferers as opposed to having it for quite a few years - I think I'm going on 7 or 8 right now. 

I like Dr. Becker's attitude.  I also feel that since she's done so many, there's a good chance that she is on the money with her responses.  And of course, there's risk with any kind of surgery.  So all we can do is go with what we feel is the best option and hope we've made wise choices.

Please keep us posted.  I would love to hear from anyone else also if others here have already had the transplant (how are you doing?) or intend to have it.

Be well all! 

Beryl2

Hello, I am considering having lnt in Paris with dr Becker secondary lymphoedema of the leg. Has anyone else done this? I am wondering what after surgery care was required and how much the surgery costs. I will not be able to get any money back from insurance.

kharimata

dear beryl



i have been in paris with dr.becker.but i am considering lnt for primary.i think post surgery is depending from person to person...



why are you so sure that you wont get any money back? i was left with the impression that there are ways to get money back....you can pm if you want....



check out this very interestingblog.....

http://lymphnodetransplant.wordpress.com/tag/lymph-node-transfer/



good luck!

Beryl2

Hello Kharimata,

I have just had LNT done in Paris by Dr Becker. I have secondary lymphoedema in my left leg due to treatment for uterine cancer. So far all has gone very well. The operation went well and I was in hospital for one day only and left hospital with a bandage to my lowere leg. MLD and bandaging started a couple of days later. I was able to walk the day after the operation and with minimal pain, the most pain being from the donor site under my arm, the groin area wher the nodes were placed hardly hurt at all. Dr Becker said she removed fibrous tissue and released a nerve. My leg felt better right from the start, with the foot and ankle reducing almost immediately, not to the size of the other leg, but improved. Since bandaging, my lowere leg has also improved. The top part of the leg can't be bandaged and this has seen the least improvement but the whole leg is softer. Dr Becker explained improvement will happen slowly over the next 6 months and for up to 2 years. Please ask any questions and I will try and answer them.

Cheers

HappyTrisha

Beryl, how long had you had the LE before your surgery?

Helensamia123

That is fantastic sounds like a great recovery... Keep us posted as to your progress.. My progress is slow but the latest tests showed much faster clearing in the lower leg since my LNT and upper leg reduced.. also would like to share this booklet it maybe of interest to others who have LE post surgery



http://lymphnodetransplant.wordpress.com/2013/09/19/lymphoedema-stories-booklet/



The booklet was created in Australia to help build awareness and to get better treatment, care and benefits.. It is the human side of LE

Beryl2

Hello HapptTrisha,

I have had lymphoedema since December 2009. During 2010, developed a lymphocoele on the right lower quadrant of my stomach and then had bouts of cellulitis in my left thigh every 4 months continuing for about 2 years until started on ongoing antibiotics and intensive MLD and bandaging.

I had LNT surgery just last week on Monday 9th September.

Keeping my fingers crossed that everything keeps improving.

Helensamia,

I am pleased that your leg is progressing in the right direction. And I think it is a slow process. I will need to bandage for about 6 months still.

Will keep you posted.

kharimata

Dear Beryl! 

Thank you so much for sharing your experience! It is nice to hear that you are doing well, and that you notice some improvement already! Please keep us updated with your experience. . . After a while people who had lnt seem to 'disappear' and like this unfortunately it is hard to know about the follow up, long term results. 

Thank you and good luck with your recovery! 

Greetings

HappyTrisha

Hi gang, thought I would check in now that I have a little bit of time.  I had decided to put off my surgery until I took off some weight that I had put on.  While nobody would accuse me of being obese I don't think, when you're a short 5'1 1/2 (I need to get in every half inch that I can!) any weight gain shows up more than if you were taller.  And though I am in a size 8 and that may not seem big, I had been in a 4 for years, so I feel heavy.  And frankly, I look heavy.  Anyway, I have been taking some weight off and have been exercising like crazy.  I dread the holidays coming up because they are always my nemesis.     I have not given up on the idea of LT.  It's always in the back of my mind.  In fact I think that after the holidays is probably a good time to do it because if I have to be wrapped up, the winter months would be the best time.  I'm not nervous about the surgery but I am a little nervous about whether they are going to be able to do it to begin with, and then of course, the results.  My LE showed up better than 7 years ago and I know that the best candidates are the ones whose LE is relatively new.  (That's why I asked Beryl when hers began.)  In terms of their being able to do it, because of previous surgeries they couldn't really tell whether the nodes in my groin would be accessible, and the only way they are going to know is to do the actual surgery.  The doctor told me that they could always use the ones in my neck, which are supposedly plentiful, but for some reason I just am not crazy about having a scar on my neck.  That probably sounds crazy, but I am scarred enough at this point.  So I know that I am running the risk of waking up and being told the surgery couldn't be done - and of course that would be a massive bummer, to go through everything you have to before the surgery, take the trip to NY, and wake up to find they couldn't do it.  So those are some of the things that go through my mind and give me a little hesitation.

Anyway, I hope you are all doing well.  I think I will do a little internet searching to see if I can find sites that have personal accounts of people who have had LT.  It's been around long enough now that there should be more about it.  I'll let you know if I find anything interesting.

Trisha

kharimata

Hey Trisha! 

I am very nervous about the scar in the neck too... One thing is aparently I am lacking nodes anyway and I am afraid of le in donor site... Which is horrible everywhere , but I think around the face is the worst...Although the risk is smaller ... which is off course the reason to take them from there, I know. But considering my history, I am not very enthousiastic. Also I am afraid, that when the lnt would not help at all... I would be remembered of this everytime I look in the mirror... I had my hopes on lympho venous anastomosis... it did not help... and now I have two scars (that I only see occasionally cus they are always covered with bandages...) but when I see them , it reminds me of it. 

You should really check the lady her blog 

http://lymphnodetransplant.wordpress.com who had a lnt to the leg... It is very interesting!

Cheers!

HappyTrisha

Thanks Khari.  I just wish there were any easier fix.  And I mean a permanent fix, not wrapping.  Boo to that!  I am going to read her website.  Thanks. 

Nordy

Kharimata --- Where did you have your anastamosis surgery done?

Beryl2

hello, I have ssen someone who had their nodes removed from their neck and even after just a few weeks the scar was barely noticeable. But I know what you mean about having scars everywhere, a bit like a battle field. And I remember the days when I used to tell people I hadn't even had my tonsils out!

kharimata

@ Nordy... In Belgium... one of the finest surgeons... One of the pioneers of free flap with breastrec.

He told me it would be a small chance it would help but since i was afraid of le donor site due to my congenital predisposition i thought i might try this first. It did however not help but it did not worsen... Lost some money and have two extra scars. The day after he told me they injected this green dye but there was no visible activity ( i saw the 'movie' of my lymph system real time trough this lamp that they hold next to your skin). However there were no vessels , too small, not collecting fluid or fibrotic. My ' good leg looked like a tree too like pipes with leakage ... But i heard that when they find vessels it can help. But primary le is often combination off multiple lymp disorders and shortage of vessels is one off them...guess for sec le it might work better but not sure if it helps to get rid of infections...

Nordy

Kharimata -- Thank you.

HappyTrisha

Check this out! I wonder why we haven't heard more about this!!!

HappyTrisha

I just tried to post something with a link but it didn't work. Maybe I'm doing it wrong? But you are definitely going to want to read it! It has to do with LNT using the wrist as the donor site and it has apparently been effective. I wonder why we've never heard about it or why doctors don't seem to be using it!

It is only for LNT on upper extremities, and they used as their study group women who developed LE as a consequence of breast cancer.

The published report is called "Vascularized groin lymph node transfer using the wrist as a recipient site for management of postmastectomy upper extremity lymphedema". If you put the following words into Google, you will pull up a bunch of articles on it. I've only read the first one, which is the PubMed study itself.

Google words: lymph node transfer using wrist

Please let me know what you think!

HappyTrisha

Here's something else to check out! (The stuff you find out when you decide to research!!!)

Google lymphovenous bypass. I'm just reading about it. I don't know how new it is, but it seems to be less invasive that LNT.