Supermicrosurgery for Lymphoedema

[Mrsmac20]

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...

[lottie63]

Hello mrsmac,

                      Sorry you are here but welcome to the forum 🙂 My surgery was a year ago this month, I am now on 6 monthly checks at the lymph clinic and next check is due in July, my arm is so much better, it really has made a difference to be honest if you didnt know I had lymphodema you probably wouldnt notice, I still wear my sleeve during the day esp when doing housework etc and in the warm weather, I dont need to wear it all the time now, I am myself wondering how my arm will be when I go on holiday as I tend to swell a bit all over in the heat, feet hands etc so we will see how the arm reacts this year.

Before the surgery my arm and hand was very puffy with excess fluid, I also have lymphodema in the breast and this has improved slightly since the surgery, Good luck with your treatment and if you have any questions please dont hesitate to ask

Love L x

[Mrsmac20]

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.

[cazza36]

Thanks everyone. I think that I'm going to have to save up. I was planning to save a deposit for a house - but this is more important. My arm is steadily getting worse so I don't think I have an option.

[lottie63]

Hi PT

          Yes I am fortunate to be under the Royal Marsden ( Sutton ) so I was able to have the surgery there and under the nhs, but you are right there is a very strict criteria and you have to be prepared to be available for regular checks throughout, I am now down to 6 monthly checks as surgery was nearly a year ago so its less intense now

L x

[piggsytrotter]

hi Cazza. I'm lucky, i'm having the surgery on 28 april but paying privately. It has never been approved by NICE and was only offered by oxford pct briefly. the Royal Marsden have a surgeon who does it but it's only offered to their own patients who must meet very strict criteria. if you google lymphoedema and Oxford you'll find the clinic and lots of info about the surgery. it's really bleeding edge stuff, very few surgeons worldwide so i'm extremely lucky that I found the 2 working together in oxford. they are both going to operate in order to get as many connections as possible. I had the icg lymphography first and the amount of damage is pretty shocking. PT xx

[Miniegg]

I didn't even know it had nhs funding 😢 I can't have the surgery and I'm gutted

[lottie63]

Hi Cazza

               I had my surgety on the nhs but it was last may, I hope it is not under threat of private only that would be awful, lymphodema services do seem to differ greatly depending on hospitals and resources, very unfair 😞

L x

[cazza36]

Hi ladies. Those of you who have had this surgery recently - did you go privately? I had heard it had lost its NHS funding. My lymphoedema is getting worse, painful and as for getting clothes - nightmare! 

[lottie63]

Hi PT

          Thats good news we are lucky to be able to have it so many ladies do not get the opportunity, it will be over before you know it and it really does make a difference I know my arm will never be as it was or the same as the other one but the improvement is definately worth it

Good luck, let us know how you get on

L x

[piggsytrotter]

Ah well, decision made. Surgery on 28 April. No choice really having seen the damage, so thank heavens I have that option. I'm also hoping to speak to someone who had the surgery last year who was more or less in the same position as I am. PT xx

[lottie63]

Hi PT

          I only had 3 available lymph channels to use they thought it would be at least 5 but once arm was open the damage was more than originally thought, so really I have had a good result with 3 more would have been better but they used what they could, I know what you mean I am 3 years from dx and I still find some days tough, but hopefully onwards and upwards, good luck with the surgery

L x

[piggsytrotter]

Hi Lottie, Many thanks for replying so quickly, all information is useful. I'm pretty sure I'm going to go ahead. I received the report this morning and it appears that even at this early stage some of the damage isn't irreversible. 

If the best result I get is the same as yours at least the LD will be reduced to 5%. The consultants seemed confident that as my lymph system is working quite strongly up until it hits the brick wall of damage that they should have a good number of lymphatic channels they can use. The longer I leave it the less likely that becomes. I also don't want to be at constant risk of cellulitis or any other infection.

Naively, I thought I'd have the mastectomy, chemo and rads and then after a few months recovery time my life would snap back more or less to how it was. Instead, nearly 2 years later I'm still having to deal with the after effects of the treatment that saved my life. Sometimes it just sucks!

But I have to remind myself, at least I'm still here ... PT xx

[lottie63]

Hi Piggystrotter

                           I had the surgery in may last year and its def worth it, ok its quite a big take on as you have to be in a sling for at least 10 days, bandaged for 2 weeks and then monthly checks for first 6 months then it's every 3 months, My LD was 21% before surgery- at its worse, it is now 11% and although that sounds high my arm looks and feels so much better, tbh if you didnt know I had LD you probably wouldnt notice, its just that one arm is brown-ish lol ( from what summer we had ) and the other one is white as I wear my sleeve still, I now have a wrist and shape to the lower arm, its lighter and the fluid is significantly less, before surgery my arm was very puffy and no real definition between wrist and hand but there is now, so I would say if you can cope with the above then go for it, its not a miracle cure but to me worth it

Good luck L x

[piggsytrotter]

Hi all. Was wondering how Ali_I got on with her follow up appointment at the start of 2015? Today I had ICG lymphography at clinic in Oxford, and the damage to my lymphatic system is quite shocking. As LD has only just manifested itself, for me there's a good chance the LVA surgery will make a significant difference. Has it worked for you Ali? My LD is between 9% and 11% and so far the damage isn't irreversible.

Any update anyone who has had this surgery can give will help me decide whether or not to go ahead. Thanks. xx

[Miniegg]

Glad to hear this surgery is having some positive effects for people. I just wish I was able to have it :0(. Xx

[ali_l]

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

[ali_l]

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

[lottie63]

Hi Lovely ladies

                           I had my 4 month check today and was pleased to learn that my arm has reduced by 7% since last time, I am now @ 12% and tbh if my arm was the same colour as the other one you wouldnt notice the lymphodema so think I may invest in some good bronzer ! just thought I would update for any of you that may be having surgery soon, results seem good so keeping fingers x it continues

Love to all x

[ja9]

Hi, Not having a good year firstly diagnosed with primary lympodemia in my left leg and then a couple of months later invasive ductal with LCIS. Would be very interested how you got your gp to transfer you to the oxford clinic. I live in lancashire. Had a sentinal node byopsey 5 weeks ago and lymoh nodes are clear. Arm ok at the moment. Struggling greatly with footware as I only take a size 1 shoe! Had some made to mesure stockingings but do not really reduce swelling.

[lottie63]

Hi Miniegg

                  We have spoken before 🙂 you are right in saying they only really consider people they think will benefit from the surgery, the consultant I saw told me they only put you through if they can detect 3 or more good lymph glands as when they operate it can reduce, mine did thet located 5 poss 6 when scanned but only had 3 they could use once arm was opened !

I also saw the extent of damage to arm by the lymph fluid , the opeartion is approx £10,000 per patient so I think this is why they are so picky,it was a bit touch and go for mine at one stage but they decided to give it a go so I no how fortunate I am its  not fair I no but hopefully soon it will be available to more, keep on pushing for it I no you shouldnt have to, good luck hun xx

[Rattles]

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

[Miniegg]

Thank you, do you mind messaging me about your experience in Belgium. Hospital, surgeon seen, cost etc. thank you. I was very disheartened when I was told I would not benefit from it but then in the report it said that he thinks it would be possible to physically do which makes me think that they only want to take on people they are sure it would work on. At this stage I'm desperate to try it! I feel like I need options.

Elinda thank you for your email today I will reply with updates of arm and the little one later this eve or tomorrow. At the moment it's dinner, bath, story and bed time for Joshua . That's my evening from 5 onwards :0)

[elinda45]

It can't hurt to get a second opinion.  I'm sure as more of these ops are being done we'll start seeing some advances in this area.  Elinda xx

[parky]

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)?

[parky]

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.

[parky]

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.

[Miniegg]

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(

[ali_l]

I had my surgery on NHS at Oxford. I live in Yorkshire though, and it took a lot of research & phone calls for it to happen, even after my GP referred me

[lottie63]

Hi Elinda

                 I had my surgery on the NHS ? I am lucky enough to be under the Marsden is this why I was able to get it on NHS ?

Love to all x

[elinda45]

So pleased to hear that the surgery has gone well.

I wish this was available on the NHS and in more locations.  The way I look at it is that all those who have it done are contributing to the evidence that this surgery works and that eventually the evidence will be strong enough for NICE to fund it on the NHS!  Elinda xx

[ali_l]

Not sure how many lymph glands they bypassed, will hopefully know more at my follow up appointment.
Bruising going down, & my arm no longer feels heavy, so hopeful of longterm improvement!
Even though I had to travel to Oxford (about 3 1/2 hours away!), I'm glad I had it done; just wish the procedure was more widely available so more Lyphoedema sufferers could benefit!

[lottie63]

Hi Ali

         Thats great news, My arm is improved quite a bit too, and also the lymphodema in my breast is no where near as bad so I am happy with the improvement I have so far, the surgeon told me we wont see true results for probably 6 months and tbh with the heat we are having at the moment I am just pleased my arm is not balloning like it was prior to surgery, good luck with your recovery, ps I had 6 small cuts ? do you no how many lymph glands they were able to bypass in your arm I had 3

x

[ali_l]

Had my surgery last thursday, 2 small wounds in my armpit & quite a bit of bruising, but already noticed improvment in arm - less swelling & less tingling! go back to see consultant in 6 weeks

[Lucy_BCC]

Hi Karen
You may find information about this via the Lymphoedema Support network, here's the link:

http://www.lymphoedema.org

Take care
Lucy BCC

[karenjs]

My sister and I have both had breast cancer - i have been reasonably lucky with lymphoedema symptoms but she (who had her bc more recenlty) is havnig a terrible time. Someone has mentioned the lymph node transfer surgery - is that what the people on here have had? Where in the UK is it available? How do we find a bit more out about it? And how are those who have had it faring?

Thanks very much for any advice or information.

[ali_l]

I found out about this via Daily Mail on twitter over a year ago; I saw a consultant last September & I'm having surgery next week!

[lottie63]

Hi elinda

               It seems to certainly done something even at this early stage, I am now back in my compression sleeve and arm is  looking less puffy and slimmer each day, fingers crossed it continues, hope your well, thank you for your good wishes

x

[elinda45]

Hi Lottie

I have been keeping an eye on this thread and rarely post these days but wanted to say that sounds like fantastic news. I really hope that this has worked well for you!

Elinda xx

[Rattles]

That's great news. Fingers crossed for improvements every day. Good luck, xxx

[lottie63]

Well I had bandage changed today so got to look at my arm, I have to say I am already impressed ! Hand and wrist area definately look slimmer, less fluid retention in mid and upper arm & it wasnt just me my hubby agreed, skin looks dreadful due to creasing from bandage but that will soon iron out hopefully lol, scars small and no bruising so all in all I am happy to date, obviously wont know real outcome for some months but it  makes me feel it was worth it, new bandage is just simply ridiculas I look like something out of a mummy film its so huge and we have a heatwave coming ............ Grrrrrr

Love to all xx

[lottie63]

Hi Miniegg,

                  They rang and cancelled bandage removal as booked too soon, has to be on for a week so being removed on wednesday I will let you no how arm is when I see it, sounds strange but I have lymphodema in breast also and it may be wishful thinking but it hasnt seemed as full/swollen since op ?? probably all in my head but you never know, hope you are keeping well xx

[Miniegg]

Hey how was bandage removal? Your surgeon sounds very positive :0)

[lottie63]

Thank you parky, surgery done at home with arm in sling no pain just discomfort from sling position really, surgeon said all went well found 3 very good lymph glands to use, i was disappointed at 3 he wasnt said would rather have 3 good glands to use than 5 or 6 mediocre and that some of his best results have been with 2/3 so we will see, friday bandage is off to be changed so im sure my arm will look very pretty,

hope all you ladies are well and lymphodema behaving xx

[parky]

I think that you're going in for your op today Lottie.  Hope that it goes fantastically!

x

[lottie63]

Had measurements and arm has increased from 12% to 17% knew it had but wishful thinking, well we will now see in a few months if any improvement after surgery , hope so as it if keeps increasing this way its going to get huge, I wear sleeve religiously, massage and do exercises so not sure whats going on 😞 hey ho onwards and upwards

[lottie63]

Im off for my pre op measurements today I will be interested to see if my arm/hand has got any bigger and also how it will react after the surgery, Keen to have op as any improvement would be wonderful but apprehensive as seen so much of hospitals over the past 2 plus years, tomorrow is the pre op assesment fingers x all goes well, hope all lymph ladies are coping well

Operation is next Tuesday .... 

x

[BlackSwan]

Here is a recently published paper with the results of this sort of technique on 100 patients.

http://www.researchgate.net/publication/258115921_A_prospective_analysis_of_100_consecutive_lymphove...

[BlackSwan]

As far as I can make out there are several different types of operations for lymphoedema.  My understanding is that the supermicrosurgery one is based on the technique developed by Dr Koshima in Japan.  There is a useful overview of the different techniques here http://ecancer.org/journal/letter/9-is-there-a-role-for-surgery-in-the-management-of-lymphoedema.php

[lottie63]

Hi

    I have had the consultation and scans etc, no side effects all ok hand  was a bit sore from jab/dye but thats it no swelling etc, I have just been told ( Today ) I can have the microsurgery on 6th May so very pleased, I will let you know how it all goes, good luck with yours

Take care