Has anyone had the operation for lymphodema that has made it worse or has Not improved it?
Please i have heard positives but would like to hear if there has been any that had not worked.
Are you referring to the LVA / super microsurgery? If so then I have heard of very positive results and sometimes results when it hasn't been successful; but at the same time has not worsened the condition. If this is they type of surgery you are referring to then I recommend you speak to the guys at the Oxford Lymphoedema Clinic as they are very candid in their estimation of likely outcomes depending on each individual case. NNE
Thanks for this - Forums (Florri?) like this are going to be even more necessary after the Britain Against Cancer conference this week, where the delegates were told that the much-vaunted strategy to improve cancer care basically hasn't a hope of reaching its targets by the early 2020s. Most depressing thing I have been to - and I wrote about it on aftercancers.com/diary. But don't be depressed: these threads of information are far more valuable to us. so we can look after ourselves.
Is your Lymphoedema primary or secondary? It makes a big difference in outcomes in respect of both LVA/supermicrosurgery and LNT/Lymph node transfer which are the two main surgical interventions. However even when successful neither is a cure. Of those I know who have had these ops, a few have been extremely pleased as their symptoms are reduced however others have had no improvement.
With both ops compression following surgery is still essential. A third surgery, Suction Assisted Protein Lipectomy/ SAPL is used to debulk large fibrotic limbs. This usually has positive outcomes however compression is permanently required afterward 24/7. None of these ops are available on the NHS, unless you live in Wales where they are undertaking LVA clinical trials.
If you’re interested in having a screening assessment to determine suitability for LVA which includes ICG Lymphography scan, contact Oxford Lymphoedema Practice. Professor Furniss and Mr Ramsden are excellent and honest about the op not possible for 90% of Primary Lymphoedema patients. Outcomes for secondary are quite good the earlier the op after diagnosis. If you’re interested in LNT, you could contact Dr Dancey in Birmingham
If you’re in the US, some insurance companies pay for these ops check with yours. For more surgical information contact Dr Granzow in Los Angeles who undertakes LVA and LNT.
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