Having my VLNT surgery tomorrow!

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Memento_Mori
Memento_Mori Member Posts: 4
edited February 2019 in Lymphedema

Hi Lymphers! I'm a nervous wreck tonight. Tomorrow at Duke I'm getting my VLNT surgery, which I am both looking forward to and dreading (well, who really likes surgery and recovery). He will be taking a packet of nodes from my R groin, after doing the SPY test to make sure that those do not drain the leg. Thankful that I will be under GA when he does that, since I heard it can be uncomfortable.

So originally, Dr. M wanted to transfer the nodes to my R axilla, after clearing out all the scar tissue in there. Now, he thinks that he'd rather use the inside upper arm to place the nodes. I showed him photos of my most recent bout of cellulitis, and because it is mainly concentrated a few inches above and below my elbow, he thinks the closer the better. He would still clean out the axilla, so there would be 3 scars/3 drains. He is leaving it up to me (he is the nicest, most low-key surgeon I have ever met) and even tonight, I'm not sure. Help! Please share any thoughts you might have about axilla vs upper arm.

Oh, and yes BCBSNC approved it, but I only found out a few days ago after a 3 week wait. Apparently, they won't cover a bypass, and my surgeon has had disappointing long-term results with that anyway so he rarely does them anymore.

Thanks so much to SusanRachel who was incredibly helpful answering my initial questions

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  • joannnc
    joannnc Member Posts: 119
    edited February 2019

    Hi - I came upon your post today.  I have moderate lymphedema in right arm.  I live on the coast but was treated at Duke.  

    I have not found any more posts from you after your surgery.  Did you have your surgery?  If so, how did it go?  Who was your surgeon?

    I would appreciate any info. you can give me on this.  Thanks.    

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  • Memento_Mori
    Memento_Mori Member Posts: 4
    edited February 2019

    Hi joannnc,

    Yes, I had my surgery and as far as I can tell (so far) it went well. Long surgery, recovery was slow, but there is a measurable reduction in swelling in my arm/hand, and no infection. I can wear a ring on my R hand again! My surgeon was Suhail Mithani at Duke and I would definitely recommend getting a consult with him. He is very low key, and after exam and discussion, will leave it completely up to you whether you want to get the surgery. Since I had tried everything and was getting more and more bouts of cellulitis, this was my only chance for improvement. I've been very pleased so far-- it can take up to a year to see results but I am already much better. I have my 3 month recheck next week, and I'm looking forward to seeing what he thinks about my progress. You are welcome to PM me if you have questions! There are not many of us who have had this surgery and I think it gets improved and fine-tuned along the way.

    Oh, and he did clear out the mess in the axilla and did the transfer into there as well- not my upper arm. I requested that he do that if the vessels in my axilla looked good. There is a little bulge right below my armpit that he says is the broad end of the tissue he transferred, but it is not terribly noticeable. It did take quite a while for the swelling to go down.

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  • joannnc
    joannnc Member Posts: 119
    edited February 2019

    Thank you for responding.  I need to digest this info. and give it some thought.  I will PM you later.  

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  • Marymc86
    Marymc86 Member Posts: 102
    edited February 2019

    I’m in NC and having lymphedema issues. This sounds promising. Good luck and please keep us posted.

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