LVA surgery

[yvonne]

I have primary lymphedema in both legs and am in the process of scheduling surgery with Dr. Granzow in California. I would really like to hear from anyone who has had this surgery and what their experience has been.

Thank you,

Yvonne

[ldemato]

Hi, Yvonne. I just found your entry and want to know how you are doing. Where are you? Are you feeling OK?

Thanks,
Ldemato

[LymphedemaGirl]

Hi Yvonne,
I too am very interested in how it all went and how things are now. Any chance of an update?

[juliedawn]

I have an appointment with dr Chang in Houston next week to discuss surgery - I have primary lymphedema in my left leg.

There was a thread about it but for some reasons the entire thread has disappeared along with my posts - confusing.

Anyway I will report when I return

[ldemato]

Juliedawn,
I'm sure this day couldn't come any sooner! Good luck to you and I hope you get some clarity on the best course of treatment to help relieve your condition. I'm going down the same path as you and will be calling for a consult next week. The only thing I dread is traveling in the hot weather and who knows what Houston is like in June? We can deal with it, right? I have primary LE in my right leg and am hoping that the LVA surgery may be appropriate.
Please keep us updated...I am here for support, too. I understand how emotional it can be and please realize that you are not alone. Stay strong and focused.

Sincerely,
L

[Hopefloats]

JulieDawn,

I also am confused as to why the thread about another members surgery by Dr. Chang seems to have disappeared. I am wishing all the best for you and look forward to hearing about your consult/surgery.

I have what would probably be considered a mild to moderate case of lymphadema in my right leg, but the discomfort I have to live with and wearing compression stockings and a night garment is something that I will never feel acceptance about

Please let us know how you make out!

[juliedawn]

Hi all,

I just got back from Houston and my consult with Dr. Chang. He was very thorough and informative. His recommendation for me was the lymph node transfer. He believes that I likely do not have vessels that are able to be bypassed although we are going to try for insurance approval for both and if he finds vessels that can be bypassed he will do it while he is in there. He feels certain the transfer will be approved largely due to the fact there is a cpt code for that but at this point there isn't one for the bypass and it has to be put under "other" and insurance companies don't like that.

So we are starting the process to gain insurance approval for the surgery and apparently their experience is that it takes a couple of months for that to happen and then after that the surgery can be scheduled. Because of how active I am (I coach a fall sport) it will most likely be after that season has completed - like end of October into November, which is when I anticipated it would be.

He was kind and very realistic. Hospital stay will probably be about 4 days and then staying in town another 3 most likely. He says my leg will most likely never look exactly like my right, but it will provide relief and certainly will drain much faster than it does right now.

I feel like it is the next step I need to take in order to try to give myself the best shot at getting some relief.

I will keep you posted on upcoming developments.

[juliedawn]

Originally Posted by ldemato

Juliedawn,
I'm sure this day couldn't come any sooner! Good luck to you and I hope you get some clarity on the best course of treatment to help relieve your condition. I'm going down the same path as you and will be calling for a consult next week. The only thing I dread is traveling in the hot weather and who knows what Houston is like in June? We can deal with it, right? I have primary LE in my right leg and am hoping that the LVA surgery may be appropriate.
Please keep us updated...I am here for support, too. I understand how emotional it can be and please realize that you are not alone. Stay strong and focused.

Sincerely,
L

FYI - Houston was hot (lol) as one might expect but I like heat so it didn't bother me too much but I got out by the pool too. I'm sure next time I won't be able to do that . Keep us posted on your appointment.

[Hopefloats]

JulieDawn,
Thanks for the update on your consult with Dr Chang. I wish you all the best on this journey!!I was wondering if you have had lymphoscintigraphy and if you have the lymph node transfer, where Dr.Chang will be harvesting the lymph node from.

[ldemato]

Hiya,
Excellent update, Julie dawn. I'm glad to hear that Dr. Chang was the utmost professional that he appears to be. I watched his recent LRF live stream and can appreciate his no-nonsense approach. These guys at MD Anderson are at the top of the spectrum.

Did you need to have any tests done before your consult? I've heard some folks say that they needed to have a lymph MRI done prior to the visit. Just wondering how he came to the conclusion that the lymph node transfer was the preferred route to take. Hey, you know what? Any route to wellness is the preferred route in my mind. I would trust his professional opinion without a doubt.

I do appreciate very much you're mention of the months needed for appropriate insurance issues and the like. Thank you for sharing your experience and keep the faith!

Best,
Lisa