Meeting with Dr. Becker next Friday

kharimata

Hello Happy Trisha

I have congenital le, based on two lymfescintography, a lymphography and an MRI. My mother and grandmother both suffer from swollen feet. 

My grandmother never made a test (doctors did not know it existed, and as old people do she trust her doctor -who has no clue about le- ).

My mother has swollen feet till i can remember. After I had my diagnose, she had a test done too and... no lymphatic problems...

So ... (before my accident) my lymfescintography showed huuuuge problems and visible no signs. My mother her test was perfect, but she has big feet.... 

She never had MLD because you need proof of lymfescintography to get it refunded. My mother told me she could very soon after injection see something coming on the screen (in my case nothing appeared not even after hours of walking ). 

So in her case she has the symptoms, but not the diagnose too. There are many things; in her case she should loose some weight, she has diabetes, doesn't sport enough. Maybe it is something with her heart: lower heart rate leaves fluid at the end points, maybe with kidneys, maybe with venous problems....

I am not saying dr. Chang is correct or something... I am just telling you this story because I had to think of it. 

Maybe you should get a third opinion? You surely want a correct diagnose. You don't want to have the bypass interfering in a working lymphatic system , while leaving the real problem (heart, venous,...) as it is. 

I know all these third opinion costs lots of money but better not take the risk? 

Take care! Let us know how it goes!

HappyTrisha

kharimata, if I hadn't been diagnosed by my radiologist and treated on and off for LE for the past 7 years plus seen by Dr. Becker, who certainly knows how to diagnose LE, I would consider the possibility.  But having developed this condition on the heels of having had breast cancer, with nodes removed and radiation, and the swelling in the arm on the side where that was done, I find it hard to imagine that it could be anything else.  Remember that Dr. Chang made that diagnose without having seen me at all.

Now that I know that the IVA lymphography is a more sensitive test than the lymphoscinitigraphy I am hoping that the answer lies there.  I imagine that if I have the lymphography and it too shows nothing, I would have reached a confusing dead end.

HappyTrisha

Okay so here is the latest.  Dr. Chen was very nice, very informative, and very helpful.  I tried to see if I could have his test done locally but it appears that many hospitals don't even know what it is.  Dr. Chen gave me the name of a doctor in Maryland, Dr. Justin Sacks.  I am scheduled to have a phone consult with him on July 3rd.  Will keep you posted.  (He's at Johns Hopkins).

Nordy

Happy Trishia - Have you tried contacting Dr. Dayan's office in NYC? I saw him last summer and I  love him! He is awesome - but when I asked about anastamosis last year, he prefers VLNT for the long term results. I don't think I have posted here for a long time... I gave up my fight with the insurance company after battling with them for 3 years. In my fight, I managed to get them to change their policy to include out of network providers for breast cancer patients (something that they had an written an exclusion in before and allowed only in-network doctors for that diagnosis only!) - so hopefully have helped many other women who were initially not given an option other than the crappy in-network doctors around here. But after all that - and a phone call from the one person who was allowed to approve treatment from my lymphedema, the insurance STILL turned me down and when I went to find that one person again, she was no longer there. Seriously. Let go? Moved to another department? I don't know, but I finally had enough of the emotional roller coaster and disappointment. That does not mean I have given up hope, because I still have it... just not willing to fight with insurance for the time being - and actually feel a sense of great relief when I made that decision. It was just so stressful!!! Plus, my lymphiscintigraphy on my right leg was not good (despite never having swelling in this leg) in addition to my right arm, AND I tend to have some swelling in my left leg (which had a perfectly normal lymphiscintigraphy - again showing how much of an imperfect test this is) - so I think it may be easy to say that my lymph system is somewhat f*cked up. Which made me fairly uneasy about having lymph node transfer since I do SO many activities with my legs - and I am with you Trishia - I do not want nodes taken from my neck. I am not a heavy build and that will be one scar that will be hard to hide and if I ever bite the bullet as I age and get a face lift (LOL - no, I am NOT kidding you) I don't want to be at risk of having some weird puffy face because I don't have nodes in my neck... no matter how slim the chances! Anyway, although I am not currently fighting with my insurance company, I am still looking at treatment, but looking more at lympho-venous anastamosis. I am seriously considering saving my $$ and heading to Italy to see Dr. Campisi. His research seems to be the most prominent and he does a LOT of them. I know here in the states, Dr. Granzow and also Dr. Neligan do them. But I don't know if it is the same technique as Dr. Campisi, I believe he makes some connections that are deeper so they tend to not be as fragile as the more superficial ones. I will let you know when/if I decide to take up this fight with them again. In the meantime, I keep socking away $$ fully intending to have to pay this out of pocket someday --- which in reality will probably will be cheaper to do out of the country anyway! 

Kharimata - was it you who had the Hebrew saying about those who believe??? Well, I have never stopped believing... just finding lots of brick walls to climb along the way...

HappyTrisha

Nordy, thank you so much for that information!  I thought I had done an update about my phone consult with Dr. Sacks, but I guess it I forgot to hit submit!  So here it is:

So here's my update.  My phone consult was scheduled for yesterday at 10 am.  It had been rescheduled from an earlier time due to a conflict in the doctor's schedule.  When they called me to reschedule, they asked me to call them back to verify the time.  They also emailed me.  I called the number but got no answer.  So I told them that in the email and said that if the doctor was definitely going to be in the office on July 3rd I'd be happy to do it, despite my typically leaving to go to the beach to be there for the 4th.  I asked them to please email me back to let me know for sure.  I never received an email.  So after about 5 days, I called and left a rather pointed message on their answering machine.  I know I sounded annoyed, because I was.  I said that I had both called and emailed and asked for verification but never received it and would appreciate hearing back from them.  I got a call back and was told the consult was definitely on.

I called yesterday morning at 10 and after about 10 minutes on hold was told that the doctor was not in the office but that they would call his cell phone and give him my number so he could call me.

I'm still waiting...

 

I certainly have no intention of getting in touch with him.  In fact, I have to say that someone here basically warned me against him and said he was rude.  I am so sick of these doctors who think they're God!

Dr. Graznow sounds really promising.  What really impressed me is that he studied under Dr. Koshima in Japan.  Dr. Koshima's considered the father of supermicrosurgery.   And when I told Dr. Chen in Iowa that I wanted to be sure to go to someone reputable, he said that I should consider going to Dr. Koshima because he created the technique and has performed over 4,000 LVAs!  (I told him I didn't think my insurance company would cover a trip to Japan, ha ha.)  You know, things happen for a reason.  Maybe I was meant to go through all of these hoops to get to this point when you would be telling me about Dr. Graznow! 

This is from an article written by Dr. Neligan: 

Lymphoscintigraphy, which is the traditional method of visualizing lymphatic structures, does not provide enough detail to visualize the subdermal lymphatic vessels, though it does provide useful information on overall lymphatic function and, specifically, lymph node function.¹ More recently, techniques of MRI-lymphangiography have been developed, which allow better assessment of lymphatic vessels² (Video 1). Indocyanine green (ICG) lymphangiography is also a useful imaging modality for mapping lymphatic channels and is more useful than lymphoscintigraphy.

 

Maybe I'll send that to that jackass Dr. Chang!

HappyTrisha

Nordy, never one to let grass grow under my feet, I just emailed Dr. Graznow.  Will keep you posted, and thanks again!

PinkHeart

HappyTrisha,

Sorry about wasted time on Dr Sacks. You know I'm not surprised. 

Good Luck with other consultations and please keep us posted. 

PinkHeart

Nordy,

My heart goes out to you for having to deal with the BS from your insurance company. 💗

I wonder if the NOLA docs could have done the LNT during one of your 2nd stage surgeries if it would cost less than having it alone.  Mine was done during my second surgery for recon revisions, but I didn't see each line item just total amount submitted to insurance. 

Nordy

Pink - Thank you. I am okay. Really. Life moves forward and really, I am LIVING more now than when I was obsessing over my lymphedema. Not giving up hope - just directing more of my energies elsewhere! 

Dr. Sullivan did not want to do VLNT after seeing my lymphoscintigraphy... Said the benefit would not outweigh the risk. 

I still love Dr. Dayan the most if I were to have VLNT - he would only take from my neck given the questionable LE situation. Very thorough, very personable and very knowledgeable. Having said that - it is a mute point because insurance put the brakes on... 

hugz4u

Nordy, how much does it cost aprox out off pocket if you go overseas?Hope your plugging away and biking still. Miss all your valuable info you contribute but I know life  goes on.

Edited, oh I see you are LIVING. More than ever, what good news!

Nordy

I also forgot to say - I like Dr. Granzow too! Just everytime I see him, my insurance company puts up a big stink...    Like normal!

Nordy

Hugz - yes, I am still around! And I am still cycling! In fact, I just rode the Seattle to Portland ride on Saturday - 204 miles in one day... my odometer read 99 degrees most of the day... so there was some misery there... LOL! And, as normal, my arm pays for it. I use the Flexitouch and elevation of my arm after big rides like that and it helps bring it back to baseline. I hope you are doing well! You are always so positive and full of encouragement!

alycallie

Just curious to know if there are any updates from those of you who had the LNT surgery??? I am going to have one done from groin to axilla at the same time as my DIEP reconstruction. It's scheduled for 3/27...just a few weeks from now. Nervous but excited!

DontdoALND

alycallie,

May I ask who is doing your surgery? I'm considering this surgery too but not sure who to go to.

alycallie

DontdoALND:

Dr. Clemens at MD Anderson

PinkHeart

Dontdoalnd,

Your complications and issues are almost identical to mine. I started at Mayo-MN (nightmare #1), then Johns Hopkins (nightmare #2), and then .... finally and thankfully to Charleston to Dr. Richard Kline, Center for Natural Breast Reconstruction. ......

He did my VLNT after my Bilateral SGAP to reconstruct me after prior failed implants. Dr Kline did MAJOR repairs working hours in OR to remove scar tissue/radiation rot, old alloderm adhered to chest wall, improved evil axillary cording, etc. For me, his work greatly reduced my pain in my chest wall and improved my mobility.

.... I def feel your pain. Please PM me for more info. Warm wishes to you and good luck with your research to find help for a better quality of life you so deserve after battling BC crap!

ahdjdbcjdjdbkf

My doctor has not had any patients develop donor site lymphedema. One theory is that radiation is a contributor to lymphedema as well as the significant scar tissue. The donor site doesn't have those factors.

DontdoALND

has anyone had VLNT done by dr. Richard Klein in Orlando? If so, did you get pain relief and reduction in you limb?

Pinkheart

I did PM you. Thanks for offering to talk with me.

rrs

Just wondering about how things went with everyone. 

PinkHeart

Dontdoalnd,

Im so sorry I didn't get back with you this weekend. I will call tonight about 6-8:00.

ahdjdbcjdjdbkf

I had my surgery with Dr. K on 3/25. Recovering well.

DontdoALND

Thank so much for sharing. Was it Dr.Klein in Orlando?

ahdjdbcjdjdbkf

Yes, Richard Klein at UF Health Cancer Center in Downtown Orlando. We stayed in a hotel for about 10 days. There are also guest houses on the hospital grounds.

DontdoALND

Did you have pain in your axilla before surgery? I've heard it can help with that.

Thank for the information

ahdjdbcjdjdbkf

Yes, I had tightness, pain, pulling and some restricted movement coming from my axilla area which I can tell has been relieved with the removal of the scar tissue. It is really baby steps for me right now seeing how all of this turns out.

Nordy

Maria -- I have my fingers crossed and am sending positive vibes your way.

DontdoALND

Glad you are seeing results. Praying all works out for you. Thanks for sharing.

ahdjdbcjdjdbkf

It's early and I'm scared to be excited but I went for a good walk tonight with no wrapping and no compression. Usually when I get home my arm is super swollen. Tonight...barely swollen at all! We will see...

Nordy

This is great news! How is your donor site feeling?

ahdjdbcjdjdbkf

My donor site is perfectly fine. I did a brisk 3.5-4 mile walk 3 days in a row and no problems whatsoever. It is retaining a touch of fluid around the site - which I was told to expect for the first 5-6 weeks or so. It is nothing bothersome.