Does anyone have any experience of being told they were not able to have the operation because of to much damage but looked for a second opinion. I was told that I could not have the operation as they thought the change would only be minimal and my lymphatic function is too damaged. The outside appearance of my arm is mild at only 7% difference but apparently what’s going on underneath is a different story :0(
Hiya miniegg. I recently went to Belgium to have a lymphoscintigraphy and ICG fluoroscopy imaging to see what the state of my lymphatic system is. Even though it has been less than a year since I have had a a SLNB and was later diagnosed with lymphoedema, the results were not good. Only one lymph vessel was seen in my bad arm. The surgeon still thinks that microsurgery would benefit me though.
I forgot to add that like you, I have been categorised as only having ‘mild’ lymphoedema as the swelling is currently less than 20%, but the surgeon was shocked at how damaged my lymphatic system actually is.
Hi Ali - did you have a lymph node transplant or LVA supermicrosurgery (where tiny lymph vessels are connected to tiny venules to bypass the blockage)?
Hi Minieegg,
Sorry about your disappointing feedback. I received much the same outcome after the results of the scan and was gutted. My swelling is well managed now but it’s in hand and fingers and I have to wear an all in one glove and sleeve to keep it under control. I could see for myself the extensive lymphatic damage and why surgery would not help but as I have lymphodema in both arms, would really like to commiserate. Like Elinda, I can’t help feeling we will see developments which give me hope. Let us know how you get on.Rattles x
Hi Parky, I had Lymphovenous Anastamosis (LVA). Surgery took about 2 1/2 hours. Now 5 weeks post surgery & even though wound still a bit sore, my arm feels so much better. I’ve got my follow up appointment in 3 weeks
Has my follow up appointment on Wednesday; still a little bit of lymphoedema swelling, which causes mild discomfort, but heavyness gone.
Will be having further followup in the new year so everything has chance to settle down fully from surgery in July
Hello I am new to the site and have been following your posts with great interest having been recently diagnosed. I would love an update from PT Lottie Ali or anyone else who has had arm surgery on how they are getting on as it is a real consideration for me.
Thanks for replying so quickly I am delighted to hear that things are still going well for you. It gives real hope to others of us. I have booked an appointment and will see where it takes me…
Good evening. Thought I would report on my 3 monthly check-up after my LVA surgery on 28 April. I am delighted to report that it is working! The % volume has gone down from 11% to 6%. There is no longer evidence of LD in my hand, hurrah. However, I must continue wearing a sleeve for the next 3 months and if I don’t wear it during the day I should wear it at night. Dr Furniss is delighted with the progress and is sure that I will eventually be sleeve free. Can’t tell you how relieved I feel. I realise how very lucky I am that we were able to afford the surgery.
hi everyone,
please can any tell me what sort of cost is the surgery for the lymphoedema microsurgery?
i will start saving , if it is within range>
many thanks and all good wishes to everyone
I have an appointment in a few weeks so am really pleased to hear the results from people who have had the surgery. Is there anything I should do before I go or specific questions I should ask when I see the surgeon? X
Your post has made me so happy. To hear of someone who has had the operation and felt the benefits so soon is really inspiring. I’m booked in for my op on 28th June. I hope I feel as good as you do after I’ve had my op. Good luck and please keep us updated of your progress. Xx
Thanks Jingo. I’ve got the box sets already lined up. 
Is the infection severe? Look forward to future updates. X
Jingo, glad to hear the infection is healing well. The heat doesn’t help but hopefully it won’t be so bad over time. Did you go back to have your stitches removed? I live quite a distance away so will be going to my GP to have the stitches removed. How long was it before you were back to normal daily activities? I wasn’t aware of CCG funding but am looking into it now. Xx
Jingo, 18 days since surgery, defo still early days. I’m hoping I will be able to go back to work full time once the stitches are removed. Did the 5/6 hour op go quickly? What did u do to stop fidgeting or getting bored?
Shazmo, it is a lot of money but I think if I can’t get help with CCG funding, it’s still money well spent if it eases the symptoms., as you said I’ll try anything!
I’ve got my tablet ready! It must’ve been difficult to stay still even if you weren’t able to do anything. Did the time go quickly?
I’ve been told not to expect instant results, more likely over a period of 6-12 months. I just hope for a good end result. I’ve had lymphoedema since early 2012 so willing to try anything.
AngelaRmee, how lucky to get the op for free. Unfortunately I’ve got to pay but if it gives me hope I will give it a try.
Good luck for continued improvement. I will keep in touch with my progress and hope you do too. X
Hi all
Thought I would update you on my progress so far. I had my operation on 28 June at the Manor Hospital in Oxford and all went well.The operation itself seemed to go over very quickly considering it was over 4 hours. The 3 surgeons were in pre-theatre to begin with, mapping out on my arm, then 2 surgeons actually worked on my arm and they kept me fully informed throughout. I had local anaesthetic with 4 incisions and didn’t feel any pain. Thankfully my wounds are healing well which is a big relief. I’ve had my stitches removed today and sterile strips put over the wounds to help further healing. I feel that my arm is already showing a slight improvement, not sure if this is wishful thinking as I have been told to expect 6-12 months before actual improvements. Regretfully I did not take measurements before the operation so have nothing to compare it with.
I go back to Oxford for my checkup in September and hopefully will see a reduction in size then. In the meantime I’m staying positive and looking forward to my re-measure. X
Jingo how is the swelling, hopefully it reduces as quickly as possible now that the wounds are healing. X
Shazmo, good luck with your reconstruction surgery. X
Hi Jingo. I’m sorry to hear about the lymphoedema getting worse. Did the surgeons give you any hope that maybe over time it will settle down?
Hi Shazmo, sorry 2 hear about ur reconstruction. Have u been given alternatives?
I’ve been getting on OK until Friday when I feel over and put my arm out 2 save me and ended up breaking my elbow. Had 2 go 2 A&E as my arm was swollen from lymphoedema so couldn’t see any other damage, even tho it was painful, until it was x-rayed. I’m going 2 contact OLP to see if they can give me any advice when I go 2 the fracture clinic next Monday.
Fingers crossed we all get some good news as we deserve it. Xxx