Lymphedema · Surgery

Meeting a New Doctor

A week or so ago I met with the UCSD plastic surgeon I’d heard of who is able to perform lymphedema microsurgery – the only such surgeon I’ve been able to find in San Diego. He was very young and distractingly cute. I liked him, but still have a lot to consider.

He trained at MD Anderson with the Dallas doc I’d found earlier, and moved to San Diego last fall. He is still waiting for his microsurgery equipment – apparently UCSD has some purchasing hoops he needs to get through, not surprisingly. He says he has already gotten lots of people like me coming to meet with him and ask about this lymphedema surgery, and his goal is indeed to set up a practice focusing on this and other microsurgery procedures.

He walked me through the various surgical options for me. I had a long list of questions and he was patient with me, I did not feel rushed. When I got to the bottom of my list, I asked him for his recommendation – what would he do if he were me? He told me which of the surgical options he thought I should do. It’s not the one I expected based on my research; I had read about how breast cancer peeps usually do a lymph node transfer during the reconstruction surgery. He explained that outcomes with that method are not usually as good. In a way this is a relief; now I can keep Dr. FixIt for the boob recon, and the timing of the two procedures can be decoupled.

Instead he recommended a bypass procedure which I’m sure I’ll explain further in a future post if I decide to proceed with that. The only downside to this procedure is that it would leave a scar on my arm, the exact location of which depends on where the lymphatic blockage is. The surgery could be done anytime, once he has his equipment. I’d need to go through a full decongestive therapy procedure beforehand, probably with the UCSD therapists.

All this was useful and educational, and, like I said, I generally liked him. On the downside, there were a few things that were not reassuring. For one, the nurse who checked me in did not quite know why I was there until I told her; her questions did not have the feel of an office that is getting a lot of patients inquiring about this procedure, as the doc had stated. Also, he seems to be early in his coordination with the lymphedema therapists at UCSD. A more integrated practice with them seems necessary to this whole thing being successful.

All this could be growing pains of a new practice coupled with my own initial uncertainty with what to expect. Since the appointment, I’ve come up with a few more questions. My next step is to discuss all of this with Dr. FixIt (appointment in late April), whom I trust, and who I think will have some good perspective on all this. I also have an appointment coming up with a new lymphedema therapist, so we’ll see what she says too.

6 thoughts on “Meeting a New Doctor

  1. Glad you found and like the lymphedema doc. Take your time with this. Even though the lymphedema is annoying, glad it isn’t an emergency.

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    1. It’s “traditional” lymphedema therapy done by a Certified Lymphedema Therapist, consisting of wrapping with special bandages, lymphatic drainage massage, and use of a vascular pump. The goal is to reduce the limb volume. Once the goal is achieved it’s maintained via compression garments. This is what I did in January (although the “maintenance” part does not seem to work great since it’s swelled back up again). One of the mysteries I have not solved yet is what I’m supposed to do along these lines on an ongoing basis (and what would be covered by health insurance).

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  2. Not having done the research, it seems a scar is an acceptable outcome if it eliminates the lymphedema. I wouldn’t worry about the present lack of organization as it seems like he is still getting his act together – he still hasn’t got all his equipment yet. I would be more interested in his training and background and what other more seasoned MD’s would say about him. Maybe you could research who he trained under. It may also be possible that his knowledge is really fresh out of the box and not that well known. I had maybe a similar experience 14 years ago when I finally found an orthopedist (who also taught at Brown Med) whose diagnosis of my left foot was not what several others had made. His response to my observation of same was he would not expect others to know what he knew. A couple of years later I had sprained my left foot and the intern at the RI Hospital Emergency Room commented on my left foot telling me what I had when she examined the X-ray. I responded that she must have trained under Dr. DiGiovanni (who has since taken a position at Mass Memorial). She smiled and said “yes”.
    Love Dad

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    1. Regarding the scar: True, although no surgery “eliminates” the lymphedema. The best case outcome is that the lymphedema is reduced. Compression garments are still needed. The worst case scenario is that it does nothing and I’m left with just the scar. Of course either way it’s then hidden by the compression garment … silver lining?? 😉

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