Super Micro Surgery: Hello All, My wife has Lymphedema... - LSN

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Super Micro Surgery

Rocksoft
Rocksoft
9 Replies

Hello All,

My wife has Lymphedema in one leg following a hysterectomy for cancer of the womb. During the procedure 29 surrounding lymph nodes were removed.

We have come across various clinics that offer surgery to correct or partially correct her condition. Does any one have experience of this type of surgery?

Many thanks in advance!

9 Replies
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Lynora

Where are you based Rocksoft?

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xvdxv

Depending on concrete type of surgery and clinics

Many clinics zero experience beware

1 like
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TreeTrunkLeg

I have almost exactly the same situation, and had my surgery 6 years ago when I was 45 yr old. My doc did not recommend the surgery. I am finding that wearing compression hose every day and getting moderate exercise, keeping my weight in check, and avoiding carbs and sugar have all made my edema controllable. I hope this helps.

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Rocksoft

Many thanks. My wife has an appointment in Oxford, see below, so let’s hope for the best. Good luck to you!

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Microsurgeon

Surgery for lymphoedema is specialist surgery. Available in most 1st world countries these days but worth searching out experienced surgeons as this is difficult and requires wise judgement as to the best type of surgery.

Essentially 3 options.

Lymphovenous anastomosis - good for early disease in secondary lymphoedema. Good at getting rid of fluid, reducing volume and garment dependancy. Low risk.

BEST IN EARLY STAGES so don't delay if newly diagnosed.

Lymphnode transfer. Good for intermediate disease. Popular in US (as paid well). Bigger operation with higher risk but useful in selected cases. Reduces fluid, volume and garments if works.

Liposuction. Excellent for reducing volume in advanced disease. (Advanced disease has volume of fat and fluid - gets rid of both unlike other two options that address fluid). Will reliably give volume parity with unaffected side if present. Trade off is long term garment wear guaranteed. (This is not normal cosmetic liposuction and you should only go to people with experience and lymphoedema practitioner back up for longterm garments)

I would suggest a surgeon who can offer all three options of surgery and conservative treatments, so you can have a bespoke treatment that fits you rather than one treatment that fits all.

Most doctors / surgeons have very little knowledge of lymphoedema or treatments. I definitely recommend searching for a reliable clinic that can offer the full range of options. Unfortunately that might mean travelling but depends where you live. Lymphoedema is a difficult long term health problem that has significant physical and psychological effects and often requires the patient to seek out the best solutions.

Good luck.

NB There is lots of discussion threads already on this forum if you look in 'related posts'

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Rocksoft

Thank you very much for this very full and detailed reply. I see you are based in Oxford. My wife has an initial appointment at the Oxford Lymphedema Practice. Would this be where you practice by any chance?

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Microsurgeon

Yes. We would be delighted to try and help your wife.

NB. In this forum I can’t have consults and I feel it is inappropriate to ‘promote’ our practice over any other. AR

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CumbriaKC

I had this surgery several years ago at the Oxford clinic (uk) where they are very experienced and have a good reputation. It was explained to me that it is not a cure, but rather a means of improving the condition and delaying its deterioration to enable normal function and a more normal appearance over the years. I still wear a compression stocking when doing exercise but I don’t get any painful swelling now, even at the end of the day, and can wear normal shoes and dresses without being self conscious. I consider my surgery to have been a success but am always aware of the need to be diligent about caring for my leg and avoiding risks which may damage it in any way. I hope this is helpful for your wife -I will be happy to answer any questions she may have about the procedure.

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Rocksoft
Rocksoft
in reply to CumbriaKC

Many thanks for taking the time to reply so fully!

My wife and I are going to Oxford mid February. We are currently keeping her leg under control with a professional massage twice a week and amateur ones on the other days from me.

We have high hopes that the Oxford guys will be able to improve her condition. I will report back...

In the meantime, the very best to you and all the other folk suffering with this largely unrecognised and underfunded condition.

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