Super microsurgery

[Tav1]

Super microsurgery? Please can anybody tell me if they have any experience of this. I cannot afford to go to the Oxford clinic although it sounds a wonderful service and was wondering if anybody has experience of it anywhere else or at the Oxford clinic. Any experiences or feedback would be useful as this is relatively new to me and is progressing very quickly. Thank you so much all of you. PS guess I am feeling very low because of it I can really identify with those of you that have said the same

[Tav1]

Thank you so much for your reply. I had surgery for endometrial cancer in mid February this year with bilateral lymph node removal in the pelvic area but high up near my belly button not the lower inguinal nodes. The swelling in both legs started within a few days of surgery. My oncology follow-up was transferred to another hospital and with this made a difference I don't know but I did not get referred to the lymphoedema service. I do have some other health problems but nothing that has cause swelling. The swelling is from my feet right up to my abdomen in both steaks and has affected my knee and ankle joints particularly badly. My mobility was already not great sometimes due to a meuro condition. I am pretty desperate to find out about supermicro surgery options as I have been told that it is most effective in the early stages and already my GP is concerned as to the speed of the deterioration. This is getting me down and dirty really grateful for any help. I'm usually a pretty cheerful and woman but we all have those times .....!!!

[Tav1 in reply to Tav1]

Oops! Excuse typos Please. I dictate into my iPhone!

[Tav1]

Thank you very much for replying. I feel very alone with this and just to reply as already helped me

[Rebec]

I think that this type of surgery is not covered by the NHS in the first place. I'm glad that your GP is keen to help you. Hope that people who've had this procedure will answer your query.

Good luck!

[Tav1 in reply to Rebec]

Thank you for your comment. I think they may be doing something more advanced in Wales with regards to the super microsurgery but I'm on a voyage of exploration at the moment. Thank you for your support and good wishes. I wish you well toO

[AnneBury]

I suggest you contact the Lymphoedema Support Network lymphoedema.org. tel [phone]. They will have some information on surgery but it is very new. They can also help you to see if you are getting all the non invasive treatment you can/ could have. For example I have below knee lymphoedema in both legs. I had multi layered bandaging many years ago and it made a huge (ongoing) difference to me.

[Tav1 in reply to AnneBury]

Thank you. The information you gave me was very helpful and I will call the organisation at the fact that you have had the bandaging and this has helped you is also very encouraging as I haven't had any advice or treatment whatsoever as yet I need some bits that I've read ! I was nicked by a horse today is ago and have come up in huge bruises but I gather that because it hasn't broken the skin everything will be okay

[MarianneC]

Hi there,

I had suoermicrosurgery performed on both legs approx 3 years ago at the Oxford clinic. I had to pay for this myself as it wasn't available on the NHS. Cost is now approx £15k. I think it has made a difference to the size of my legs. After 3 months the size had reduced by 40%. I have leg and genital lymohodema. The operation helped with the genital LD as it reduced the amount of lymph fluid that was flowing into that area from the legs. I had a total of 5 operation areas in the body and 2 anastomoses (joining of lymph channels to blood veins to bypass problem areas) in each one. Not sure if it's available now on the NHS but suspect not.

You can find out more if you google the Oxford Lymphodema Clinic.

Hope this helps,

Regards,

Marianne

[Tav1 in reply to MarianneC]

Thank you, I have been in touch with the Oxford clinic but at the time I thought it was only available from them. It would cost between 18 and £20,000, money I haven't got! ... And cannot borrow even against my house I don't think as I am on my own and not a good bet given my health situation! It is very useful to know that you have had such good results As I am determined to do as much as possible to get the best outcome I canas it is really affecting me in many ways already. Thank you again I'm really heartened by the responses that I have been getting

[Angelil in reply to MarianneC]

Hi Marianne, did it cost £15 k for treatment of both legs? I can't get a quote until I've been for the tests but don't want to waste money on consultations unless I know that I can cover the costs of LVA!

[MarianneC in reply to Angelil]

Hi there, yes it was for both legs. I think it was about £13k when I got it done 3 years ago but believe its now about £15k. The tests involve injecting green dye and then using a scan which shows up your lymph system and exactly where the issues with blockage are. Its very interesting to see it even if they decide you are not suitable. You can use this information if you are getting massage for your affected areas so its great to know the places to give attention to. They can tell from the scan if you are suitable for the operation. I think the initial consultation is about £300 and the scan procedure about another £400.

Hope this helps, M

[Tav1 in reply to MarianneC]

Hello Marianne, I haven't been accessing HealthUnlocked for some time and it's good to come back. Unfortunately I don't think a lot has changed with regards to the situation with The operation but I am now being seen at St George's. Great people but very very slow in terms of appointments and progress for me. I have a problem with the garments not fitting. How are you now and how is the lymphoedema? Do you still feel that it was worth having The operation ?

Very best wishes, Amanda

[MarianneC in reply to Tav1]

Hi Amanda, Im glad you have now been referred to St Georges but know what you mean about slow progress. I suppose its better than nothing. Garments can be a pain to get right. I have been wearing the same stockings for years now tha seem to work for me. I only wear one on my left leg which is the biggest.

Yes I definitely think the operation was worth having, despite the cost. It has helped the lymph fluid to flow better an reduced the amount of cellulitis I get. I also do regular massage and have a Lymphapress machine which I use at least twice a week. Its a constant battle though.

I have had to spend quite a lot of money to help my condition but in fairness have also had a lot of help from my NHS lymphoedema nurse.

I think its unfair that there is so little help out there for us though.

Regards, Marianne

[veriterc]

If this might be right for you, it is worth while seeing if you can get NHS to pay for it. I did, and got treatment privately - all free! I write about steps I took on

after-cancer.info/category/...

and start at Step 6 - as most MPs are fairly unhelpful in my experience since last election,

Good luck

[Tav1 in reply to veriterc]

You are a star! As are others who have replied I haven't yet looked at the link as it is late and my eyes have gone fuzzy but first thing tomorrow I will check it out. The private clinic in Oxford that I spoke to seem to think that I was a really good candidate but may have to have general Anastasia given the comorbidities that I haveand that is more expensive, £18-£20,000 is out of my reach! What you have said is really helpful because I am angry that I wasn't given the opportunity to make an informed decision with regards to sentinel node is being removed. The surgeon you I was worried about the possibility of Lymphoedema and didn't tell me that this was an option. He later told to be on the ward that I was quite intelligent and most patients didn't understand all of this!! ! I only have the energy for so many battles at the moment and have to pick wisely but this is one that I need to follow through !

[Angelil in reply to veriterc]

Hi veriterc,

I've just come across your post but the link no longer works! Did you apply for an independent funding review? If so how did you prove that you are a better candidate than anyone else? Also where did you have it done (sorry for all the questions!)

Thanks in advance!

[Hidden]

I had supermicrosurgery on my arm at the Oxford clinic last November and it has transformed my life. My left arm is still bigger than my right, but the difference is now less than 5%. It is soft, no longer heavy and no longer tight.

Yes, it was expensive - I think the final bill, including hotel costs (I live in Newcastle) was about £16,000. Like you, I was desperately unhappy so I decided it was worth the investment, if only for the sake of my mental health.

I also couldn't borrow against my house, but amazingly Sainsburys loaned me most if the money, and a very good friend loaned me the rest.

My car now has 100,000 miles on it, but it's a Toyota so I'm desperately hoping it will last for the next four years until I pay my debts off. But even if it doesn't, I'd much rather have my arm back than a new car.

And yes, it is more effective in the early stages, so get out there and start pushing for it!

In the meantime, do you have MLD? You might be able to get this through the NHS, but if you can't there are lots of private practitioners. Even if you can only afford one session a month I think you'll find it very helpful.

[Tav1 in reply to Hidden]

I am trying to arrange MLD at the moment but practitioners are few and far between in my area of Kent. Thank you for sharing your experience of your surgery as before I posted on here I didn't have any contact with anybody who had experienced it. I was retired very early from my profession on medical grounds when I was 38 and have been doing some self-employed work but because of all this I have not been able to do anything for the last two years and will only to be able to do very limited work so thank you and I'm so pleased you manage to get a loan! It also made me smile that you're from Newcastle it reminded me of a good friend I had from up there! All happy thoughts welcome as I am going through the whole range of emotions associated with loss at the moment! Not sure if it is better or worse that I haven't got a partner ......it is in the quiet times it gets me. Hope you all don't mind me sharing

[Hidden in reply to Tav1]

I don't have a partner either. I split up with him the year before I got ill. I used to really envy others in the hospital who had supportive partners, until I remembered that that was why I split with him - he was the exact opposite of supportive and would have just made my everything even worse!

I've recently been made redundant as well but have decided that enough is enough and I'm going to live the life I want, not the life everyone else tells me to live. So I've set up my own business, on my own, no partner to undermine me, I go to meet clients with my compression sleeve proudly displayed and my wonky boobs, and I have never been happier.

The moral of my tale is that the only thing certain about life is that it never stays the same for long and you never know what is around the next corner - good or bad.

Just keep pushing - you deserve it!

[Tav1 in reply to Hidden]

You sound like you have the same spirit that I have. Despite a long-term illness and disability as soon as I feel better I have a neat trick of forgetting the bad times and immediately have plans for what I can do and sometimes of course I fulfil those plans! I am a fighter but need the energy to process all that has happened and look at The possibilities. I get incredibly tired as a result of my combined healthy shoes but to look at me you wouldn't think there was anything wrong. I am having to rethink my clothing as many things don't fit or irritate the nerves in my legs. Random lad! Thank you for your support. Good luck to you

[MsDEL in reply to Hidden]

I have also had successful treatment in Oxford which I funded through a loan from Sainsbury's. I also likened it to the value of a new car - the operation was certainly better value in terms of improving my life than a new car would be any day! My leg was affected and it reduced in size by 60% in 3 months - life changing!

Sadly I live in Oldham where the NHS have decided to withdraw the Lymphodoema service, including the nurse. All my treatment and advice has had to be private. Post code lottery some for of us

[Niktcx]

Hi have you seen a lymphodema nurse / clinic ? They measure your legs and give you compression garments which are not fun or attractive to wear but will reduce the pain and swelling. I have recently been given a faraway wrap ( velcro strapping bandage ) which I use at night on my leg. I cover my leg in body butter moisturiser before putting on the sock and then compress with the wrap and that has made a big difference to my leg .

I am in process of trying to get the NHS to allow me to have surgery to fix my leg , early days only had my first appointment yesterday at the hospital . Once tests have been done to see if they think surgery will help I will have to apply for funding for the ooperation. Has anyone else tried to apply for the funding ? If so what was the outcome ?

Nikki . .

[Tav1 in reply to Niktcx]

Have you seen the reply from Veriterc? It gives a link as to the steps to take to obtain funding. If you can't see it please let me know and I will copy and paste it to you. I'm glad the bandaging is so successful for you. I have been told that it could be 7 to 10 months before I see anybody so that is my next battle! I have a neurological disorder and some spinal problems that affectthe nerves in my legs that was pre-existing so I'm hoping that I will be able to have the bandages! Thank you so much for your reply and good luck with obtaining the funding. Would be great if you could keep in touch with me as to how you were getting on with it

[Butterfly-lady]

Hi there

I have Bilateral Lymphoedema from ankle to groin, caused by the drug Quetiapine XL(slow-release) , which was prescribed inappropriately by an NHS consultant, in August 2012. When I pointed out that my ankles were swelling, three months after I was put on this powerful antipsychotic, prescribed as a sleeping tablet ( I was perfectly stable in respect of my Bipolar, at the time, on Carbamazepine alone, if it ain’t broke, why try to fix it?) , she told me that the swelling was not a side-effect, I therefore carried on taking the Quetiapine XL for eleven months, until one of my GP's intervened because of the state of my legs and requested a review of this prescription by the consultant. I last saw the consultant on 31/10/2013. At a formal complaint I made in after obtaining my medical records, I found that my records did not reflect accurately what had taken place over the fifteen months I had been seeing that consultant. My husband, Chris, was misquoted by the consultant, as saying to the consultant that I was manic. Chris had never said anything of the sort.

I then tracked down a former colleague, from when I worked on the wards of Wexham Park and Heatherwood Hospitals, as the Assist Project Welfare Rights Adviser, for Slough Benefits Advice Centre and later the manager of the centre until it was closed in December 2004 due to lack of funding. This work, included, working one day a week, on all the wards, including, the psychiatric wards of the two hospitals, plus one day per week, with the Slough CMHT and at Maidenhead CMHT half a day per week. This former colleague was Dr John Wilkins, a Consultant Psychiatrist and an expert in Bipolar Syndrome. I had remembered him, for his brilliant, totally holistic approach, with my clients, when I attended CPA meetings with them.

I saw him on 7th November 2013 and he stopped the drug immediately but had to put me on a decreasing dose, of the non slow-release version if Quetiapine, for two months to prevent the ghastly withdrawals that can occur if you just stop the drug completely. He was shocked that I had been prescribed this drug, when my Bipolar, had been stable for twelve years. It had been prescribed to me as a sleeping tablet.

Subsequently I was informed by one of my GP’s in March 2014 that the Lymphoedema had spread up above my knees and was now in fact incurable and irreversible. There was also no treatment in Berkshire for Lymphoedema sufferers, whose condition had not been caused by cancer treatment, despite the fact that only 25% of people with the condition are cancer patients.

I eventually obtained an appointment at Churchill Hospital. Lymphoedema clinic. I later went to see the Oxford Clinic, a private establishment, at my own expense, to find out how far up my torso the problem, had spread, only to be told by them, that I did not have Lymphoedema at all, I was just overweight. I have since been fortunate enough to be referred to St Georges Hospital in London; although I have not yet begun the recommended 4 part Complex Decongestive Therapy treatment, they have confirmed that I do have Lymphoedema. I cannot therefore recommend the Oxford Clinic to you. St George’s on the other hand, has wonderful doctors and staff including until he retires, Professor Peter Mortimer, an expert on Lymphoedema. I thoroughly recommend that you get referred to St Georges clinic, or, depending on where you love, the St Oswald’s Newcastle Clinic or one of the NHS clinics listed on the LSN website

I have Bilateral Lymphoedema from ankle to groin, caused by the drug Quetiapine XL(slow-release) , which was prescribed inappropriately by an NHS consultant, in August 2012. When I pointed out that my ankles were swelling, three months after I was put on this powerful antipsychotic, prescribed as a sleeping tablet ( I was perfectly stable in respect of my Bipolar, at the time, on Carbamazepine alone, if it ain’t broke, why try to fix it?) , she told me that the swelling was not a side-effect, I therefore carried on taking the Quetiapine XL for eleven months, until one of my GP's intervened because of the state of my legs and requested a review of this prescription by the consultant. I last saw the consultant on 31/10/2013. At a formal complaint I made in after obtaining my medical records, I found that my records did not reflect accurately what had taken place over the fifteen months I had been seeing that consultant. My husband, Chris, our church home group leader ( J, a retired medical professional) and another friend R had all even misquoted by the consultant as saying to the consultant that they thought I was manic. None of them has said anything of the sort.

I then tracked down a former colleague, from when I worked on the wards of Wexham Park and Heatherwood Hospitals, as the Assist Project Welfare Rights Adviser, for Slough Benefits Advice Centre and later the manager of the centre until it was closed in December 2004 due to lack of funding. This work, included, working one day a week, on all the wards, including, the psychiatric wards of the two hospitals, plus oe day per week, with the Slough CMHT and at Maidenhead CMHT half a day per week. This former colleague was Dr John Wilkins, a Consultant Psychiatrist and an expert in Bipolar Syndrome. I had remembered him, for his brilliant, totally holistic approach, with my clients, when I attended CPA meetings with them.

I saw him on 7th November 2013 and he stopped the drug immediately but had to put me on a decreasing dose, of the non slow-release version if Quetiapine, for two months to prevent the ghastly withdrawals that can occur if you just stop the drug completely. He was shocked that I had been prescribed this drug, when my Bipolar, had been stable for twelve years. It had been prescribed to me as a sleeping tablet.

Subsequently I was informed by one of my GP’s in March 2014 that the Lymphoedema had spread up above my knees and was now in fact incurable and irreversible. There was also no treatment in Berkshire for Lymphoedema sufferers, whose condition had not been caused by cancer treatment, despite the fact that only 25% of people with the condition are cancer patients.

I eventually obtained an appointment at Churchill Hospital. Lymphoedema clinic. I later went to see the Oxford Clinic, a private establishment, at my own expense, to find out how far up my torso the problem, had spread, only to be told by them, that I did not have Lymphoedema at all, I was just overweight. I have since been fortunate enough to be referred to St Georges Hospital in London; although I have not yet begun the recommended 4 part Complex Decongestive Therapy treatment, they have confirmed that I do have Lymphoedema. I cannot therefore recommend the Oxford Clinic to you. St George’s on the other hand, has wonderful doctors and staff including until he retires, Professor Peter Mortimer, an expert on Lymphoedema. I thoroughly recommend that you get referred to St Georges clinic, or, depending on where you love, the St Oswald’s Newcastle Clinic or one of the NHS clinics listed on the LSN website

I am campaigning furiously to change this postcode lottery and have succeeded with the support of the Reading Borough Health and Well-Being Boardin getting the Reading CCG to do a u-turn earlier on their previous decision last October and are now commissioning treatment for sufferers with non-cancer treatment related Lymphoedema, for Reading.

[Tav1 in reply to Butterfly-lady]

Hello coincidently and totally irrelevant but I used to use to work professionally in mental health. So sorry to hear about the prescribing errors that have caused you problems. My lymphoedema is also bilateral from ankle to groin, and seems to be affecting my tummy bottom and hips as well. Information about Saint Georges is very useful and I will certainly try to get referred there. I know some people have been very positive about the Oxford clinic but I have some reservations and it is useful to see both sides of the picture. Good luck and please let me know how you getting on

[Rebec]

Tav1, Even if you end up not having an operation, you have to take into account that there are a variety of machines that mimic the massage that one needs, they can be successful in reducing the bolume of the affected limb, are by far less invasive, and cost only a fraction of the operation you want to have.

[Tav1 in reply to Rebec]

I have a vibration plate machine which is certainly seems to benefit my overall health and mobility. Could you give me any information as to where to look for the types of machines that you were talking about please. No professional guidance for some time

[Rebec in reply to Tav1]

There are a few that sufferers keep mentioning on this forum but the one which, in my opinion, will be the best for you is the LymphaPress. You can google this name and hopefully, you'll get the details about this machine. You can even try it at home for two weeks (for a nominal charge). I had the details but can't find them. In any case, may I suggest you ask the opinion of people here what machines they suggest and you'll be inundated with replies.

[veriterc]

Might it be worthwhile paying for professional assessment at the Oxford Clinic. Then if you think the treatment would work, go to your MP and/or MEP and ask them to press for you to have this on NHS?

[Tav1 in reply to veriterc]

That sounds like a plan! It would cost £680 for the consultation and scan plus me paying for a driver out there and overnight stay but if the powers that be would except the assessment from a private clinic it would be money well spent. I will check whether that would be except a ball. Thanks again because all this is giving me so many all more options then I was aware of previously

[Hidden]

Kelvin Ramsey at the Royal Marsden is the only consultant who performs super microsurgery on the national health,but I think you have to be in the area to qualify,or have a very good GP,this procedure is not NICE approved so difficult to have on the National Health.Sorry if this is bad news.

[Tav1 in reply to Hidden]

Thank you very much for your reply. Unfortunately I have not been well enough to take this further until now so I will follow up this information. Thank you very much again

[dorih77]

Hi! I have lymphedema since 1990. Recently I read that Dr. Giacalone from Belgium is a very good doctor. Did you heard about him?

[Tav1 in reply to dorih77]

Yes, a few other people that have replied to me have mentioned him so I am going to find details. If you find them before me please let me know and likewise I will let you know what I find out! This seems to be a way through this but I am at the information gathering stage at the moment. Thank you for the reply Best wishes and good luck

[Rebec in reply to Tav1]

Hi Tav1, I remember readings comments about this surgeon on this forum. I think some people have been treated by him. Maybe ask the forum about him.

[dorih77]

Hi! I am going to find details too. Keep in touch! Have a nice day!