Lymph Node Transfer: Post-Op Recovery

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Katiejane
Katiejane Member Posts: 789
edited July 2015 in Lymphedema

Hi Ladies, I am looking into a possible LNT this August. I live in an state that has absolutely NO lymphedema therapist. Closet one is a 5 hour drive(one way) so not very convenient!!!! I was told by the surgeons office that the standard of care for post-op LNT patients is 3 months, 5 days a week of lymphedema massage by a certified therapist and being wrapped 23/7 for those 3 months. The wrapping I can do but unless I relocate for 3 months there is no way I can have LE massage 5 days a week! I was even told that I could rent an apartment for those 3 months in the city where I'm having the surgery!!!! Really???? Anyway, I was just wondering if this was what you ladies who have had LNT did for your post-op care. If not, what did your surgeon require??

Thanks for any input!!!! katiejane

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  • Christine2000
    Christine2000 Member Posts: 176
    edited July 2015

    Hi Katiejane--

    I am one month out of LNT surgery. I am wrapping but also alternating with a compression garment and at night I wear a ready wrap. Surgeon thinks one more month of wrapping. I see a PT twice a week. All of this with my surgeon's guidance--I hope this helps--

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  • kareenie
    kareenie Member Posts: 339
    edited July 2015

    Is there an American Cancer Society Hope Lodge in the city you would be traveling to? If so you could stay there while receiving cancer related therapy.

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  • Katiejane
    Katiejane Member Posts: 789
    edited July 2015

    Kareenie, I'm not sure if there's a Hope Lodge there or not. From what I've heard they are a wonderful resource but the bottom line is I can't be away from home for 3 months! So if that's the protocol I will be required to follow, I won't be able to have the LNT. What a disappointment! I wish I had known this before I spent time and money traveling for the lymphoscintigraphy not to mention the emotional aspect of things!

    Thanks, katiejane

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  • Katiejane
    Katiejane Member Posts: 789
    edited July 2015

    I'm still looking to hear from someone who has had LNT that would be willing to share their physicians requirements for lymphedema massage therapy and wrapping after surgery. My Doc wants me to wrap 23/7 for 3 months and see a lymphedema massage therapist 5 days a week for the same 3 months. I need to make a decision on what I'm going to do and thought I'd ask you ladies one more time before I made my decision.


    Thanks in advance for any info! katiejane

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  • mary625
    mary625 Member Posts: 1,056
    edited July 2015

    I did not have the procedure--failed the preliminary testing--but those would have been my surgeons requirements. They would have been very hard for me to meet. Given what I know about lymphedema through my experience thus far, I'm sure I'd see a great improvement by just going through the aftercare protocol. I suppose the hope is that after that, the new nodes will take over.
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  • Katiejane
    Katiejane Member Posts: 789
    edited July 2015

    Mary, thank you for getting back to me! Yes, the post-op protocol is going to be the hardest part for me. It is a HUGE commitment! Ideally, the new nodes take over and there is improvement. I know it is not a cure as we all know there isn't such a thing! My reason for doing this is not so much the swelling but I have had 5 episodes of cellulitis in which 2 I have become septic. Can't afford to keep doing that! It's a gamble but I don't feel I have a whole lot of choice! I think life itself is one big gamble.!! Thanks again! katiejane

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  • mary625
    mary625 Member Posts: 1,056
    edited July 2015

    Katiejane--I understand. I have luckily not had cellulitis. I hope all goes well.
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  • Christine2000
    Christine2000 Member Posts: 176
    edited July 2015

    katiejane-- see my message above. I had LNT on June 6 and my surgeon's protocol is MUCH less strenuous

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  • Katiejane
    Katiejane Member Posts: 789
    edited July 2015

    Thank you Christine! I hope you are seeing very positive results!!!! It looks like I will be going ahead with surgery in August but the post-op therapy requirements have been altered a little bit to better meet my situation. It is not ideal but it does make it doable! I'm excited but also anxious and a bit nervous! katiejane

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