Thinking about going for it: I have recently started... - LSN

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Thinking about going for it

lymphleg profile image
lymphleg

I have recently started doing research on surgical options for lymphedema. I have lived with this condition for over 30 years now and until about a year ago never knew that there were surgical options. I am grateful to social media groups for my new knowledge. I have lymphedema in my lower left leg and recently inquired with Dr. Granzow's office regarding the SAPL. I need to get my insurance info submitted so that I can schedule a consult. I am a little leery yet excited about the possibilities. Dr. Granzow is in CA and I am in TN. I know that this will likely by very costly but I just want to feel normal again. I have lived with this my entire adult life and while I have tried my best to make the best of it I cannot help but wonder what it would feel like to be rid of the heaviness and ALL of the tedious maintenance that comes with lymphedema. Either way, I feel like I owe it to myself to at least try. I'll keep you posted.

26 Replies
LymphSuppNetwork profile image
LymphSuppNetworkAdministrator

Have you watched the videos on our YouTube channel - very interesting.

I have not but I will. Thank you.

Good luck lymphleg I can see you are in the US so hopefully your research will pay dividends x

lymphleg profile image
lymphleg in reply to lovesradio

I'm hoping so!

I've looked into SAPL for my leg. I was advised that I would need to commit to wearing compression 23h a day after the procedure.

lymphleg profile image
lymphleg in reply to Perido

I feel as though I'm doing that now. Being in compression house all day, using the pump st night, and using a nighttime garment while I sleep. It's tiring...

I’ve had to wear compression continuously since SAPL but now at night can wear soft compression at 20-30 so it’s super nice easy. It beats having my leg just get bigger no matter what I did.

have you looked into the Cleveland Clinic. they do surgery there as well and they are in Ohio

lymphleg profile image
lymphleg in reply to debles1

I did not know. I will look them up and reach out. Thank you!

lymphleg profile image
lymphleg in reply to debles1

I scheduled my appointment today! Thank you.

Good for you! Dr Chen at Cleveland Clinic performs LVA super microsurgery surgery with a very impressive success rate. Both my brother and I have had really good results. I’m just 6 weeks post op but I’m wearing less compression than before surgery and expect improvement to continue.You can watch some of Dr Chen’s webinars to get a good idea of his surgical advice and his lymphedema research on both primary and secondary.

Best of luck.

lymphleg profile image
lymphleg in reply to Regz

I'm glad to hear this! I will check out Cleveland Clinic. That would be a little closer. I hope that your recovery continues to go well.

Regz profile image
Regz in reply to lymphleg

Thank you. I’m happy to hear that you’ll be checking with the best. I think that you will be impressed and optimistic after meeting Dr Chen and his staff.

lymphleg profile image
lymphleg in reply to Regz

I scheduled my initial appointment with Dr. Chen today. It's not until July. I'm trying not to get my hopes up but hoping that I am a good candidate for the surgery.

Regz profile image
Regz in reply to lymphleg

That’s great news. I think that you will be impressed with Dr Chen and his staff.The ICG test really gives you and the doctor important information about your lymph system function.

There are wonderful areas to explore on foot during the hours between the tests and appointment with Dr Chen later on the day...the park, Cleveland Museum of Art (which also has a very good restaurant cafe),Chase Western, and more.

lymphleg profile image
lymphleg in reply to Regz

Thank you! I'll add a couple of these to the itinerary 🙂

I got SAPL last November after not having conversation treatment methods work for almost 10 years. I’ve always been active but I did not realize how much my lymphie leg was slowing me down. I’ve been able to double my speed for the stair climber, and feel stronger and happier. It was definitely worthwhile for me.

This is encouraging to hear! I cannot recall how it ever felt to have 2 normal sized legs since I have been living with lymphedema for about 31 years now. I'm glad that your procedure went well.

lizb1952 profile image
lizb1952 in reply to lymphleg

Are you positive that you have Lymphoedema and not Lipoedema? The reason I ask is that usually if both legs are affected it is Lipoedema. This is the condition that I have and have had specialised non cosmetic liposuction for in the Uk.

I think that’s great and wish you the best of luck!!

Thank you!

This was all very interesting. Does anyone know which factors make someone a good candidate for surgery? And which ones don’t? During most of the pandemic, I didn’t have manual lymph drainage done because my therapist didn’t work, but the swelling didn’t increase much if at all. If I still have to wear compression the same as before surgery, what are the benefits of the surgery? Thanks!

lymphleg profile image
lymphleg in reply to Kallenubble

What I am hoping for is that the heavy, tight feeling will subside in addition to some reduction in size. I don't mind having to wear the compression hose if I can get relief in that area.

Thanks for your response! Yes that makes sense, and would be a nice benefit. I am just wondering whether a patient needs to have certain particular discomforts to be eligible for this surgery, such as pain, a particular size difference compared to the other limb, or anything else along these lines. In other words, how serious does your lymphedema have to be to be considered a good candidate for surgery? Or maybe it’s not just about the lymphodema itself, but other aspects of your health...?

lymphleg profile image
lymphleg in reply to Kallenubble

I just watched a video on YouTube where Dr. Chen touches on this and a few other topics. youtu.be/avM9BTyGjHo

Perido profile image
Perido in reply to Kallenubble

I went for an assessment for suitability for surgery at the Oxford Lymphoedema Practice in the UK. I was advised that in order to be suitable for LVA it was important to have some good quality functioning lymph vessels in the area of surgery. My ICG lymphography scan showed I had virtually no normal lymph function below my knee so unfortunately I'm not suitable for LVA. Neither am I suitable for LVNT but I'm not sure why. My lymphie leg is so far responding well to conservative management but I was told I would be suitable for SAPL if my leg got significantly bigger - I'm committed to doing all I can for that not to happen.

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