I have primary lymphedema in my right leg. It first presented itself 3 years ago in my late twenties. I'm in good physical shape, get lots of exercise, eat a healthy, low sodium diet, wear compression garments, and use a Flexitouch pump. As uncomfortable as my lymphedema is, I am able to manage it by sticking to these daily practices.
I had LVA surgery one week ago and am currently at home recovering. After waking up from surgery, my surgeon informed me that my lymphatic vessels were too scarred for him to work with. He was only able to make one bypass in my knee and didn't seem too positive that it would make a difference in my swelling. I'm feeling very disappointed as I had high hopes for this surgery. Is it at all possible that one bypass could potentially improve my leg or is that hoping for a miracle?
I'm not sure what to do at this point. Should I seek a second opinion? Would another LVA surgery with a different surgeon even be an option? Or would it be futile? I know there are other surgeries that can be performed, but they seem much more invasive and risky. Any insight would be great appreciated.
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lestr0ke
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Sorry to hear of your surgery outcome. I can imagine you’re feeling quite devastated. I’m not surprised to hear the surgeon didn’t find working lymph vessels. it’s widely known, and the best, responsible LVA surgeons are honest with patients, that LVA can’t be successfully performed on over 90% of Primary LE patients.Therefore trying to have LVA again with a different surgeon will likely be fruitless. LNT won’t be a good option as the location where nodes are harvested to transplant then become vulnerable to developing LE
I know first hand that learning to live with Primary LE and the required daily self-treatment is a lot to get used to and to have to accept. In the first 2 years post diagnosis I tried to find a way out of having the disease. It was several years ago (not long after the experimental lymphatic surgeries had been invented) that I had consults and pre-assessments for LVNT and LVA in the expectation that I could use surgery as my way out LE. Sadly, the upsetting reality is that it’s not possible to find a ‘fix’ or ‘get out’ from Primary LE which is incurable. It’s an emotional process and takes time coming terms with and accepting a LE diagnosis. I wish you well on your journey and suggest you connect with other patients for emotional and practical support. There are loads of support groups in the US (this is a UK site) on social media and many resources on the LE&RN snd NLN websites. Connecting with other Primaries can be very helpful. Also find a CLT-LANA for compression advice and occasional MLD treatment in addition to using your Flexitouch. Take care, Catherine
Hi lestr0ke, you ask a lot of good questions - and you probably know the answer. No-one knows how successful the surgery will be until time passes. The surgery is possibly less successful on people with primary lymphoedema due to the nature of primary - many vessels are not in great shape (versus secondary lymphoedema - where a particular area has been affected by surgery etc - more localised condition). If you seek a second opinion, look for a more experienced surgeon. You did not mention who did your surgery, and it is best to keep names out of social media for fear of ruining reputations (all surgery can have adverse effects at times - not necessarily due to the surgeon). If you are looking for a second opinion, there are 3 surgeons that come to my mind in the USA - in California, Dallas and Ohio (Cleveland Clinic). That is where I would be looking if I was in your shoes. There are other doctors out there- lymphoedema surgery is gaining momentum. Best wishes!
Please get another opinion, I had lva a few weeks ago at Cleveland clinic. Dr wei Chen, he is an excellent surgeon. Not all surgeons are created equal. I did an exhausting search last summer finding a few of the best surgeons for this condition and I went with Dr Chen. If it were me I would get another surgical opinion. Don’t give up hope!!
I would definitely talk with another surgeon (or two). With my own lymphedema journey and with other health issues I have found differing approaches/opinions in the medical field. There is so little research on the lymphatic system and the information dissemination is poor so I would seek out another opinion. (I too am one of those who exercises daily, eats healthy, does MLD wears compression & pumps but my leg just kept swelling. I had to get SAPL and will get a lymph node transfer at the end of the year).
Did you have any scans before your LVA surgery? I had an assessment to evaluate my suitability for LVA which included a ICG lymphography scan. The scan showed I had very poor lymphatic flow below my knee and the surgeon concluded I wasn't suitable for LVA. I had my scan December 2019 at which point I'd had secondary lymphoedema (cancer treatment) for 2.5 years although it was considered I may also have underlying primary lymphoedema - that was a surprise as I'd not had symptoms prior to my cancer treatment - I'm in my 60s.
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