Bad news from surgeon meeting : Hey you all! I just got... - LSN

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Bad news from surgeon meeting

ulverin
ulverin
29 Replies

Hey you all! I just got out of the surgeon's office with bad news. They did me a "live" lymphography cause they thought my last mri was faulty, cause it showed hardly no movement at all. But it didn't show now either. Below knee I was almost normal but in the thigh, nothing. I am thus not a candidate for LVA and the only option that I would benefit anything from would be a node transplant for my knee. I don't know how much of help it would be. And they're a bit reluctant to do it cause it's new and has risks.

I must be in shock cause I hardly feel anything! The other option is to "continue with traditional treatment" which means compression which doesn't help shit. I don't know how it's even possible that there is No lymph movement to be seen. I never have skin infections and the skin seems fairly ok.

I am so afraid that I have to live with this misery all my life. I can't believe how my life has become.

Has anyone have the same results from scans?

Please, some help and opinions would be greatly needed!

29 Replies
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Jennymary

Sorry to read of your unpleasant visit to the surgeon, give yourself time to get over the shock of what has been said to you, and then see what, if any, options are open to you, look after yourself, xx

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ulverin
ulverin
in reply to Jennymary

Thank you, I'll try. If there's anything "good" about this, I think I could have water assisted liposuction, since there don't seem to be any healthy lymph vessels that would suffer from this. And then maybe I'd at least stay skinny for a while and then there would be a drug discovered for lymphedema so everything would be OK...

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Lynora

Did they scan the nodes in your lower abdomen? How long did they give the dye to 'travel'? Depending on the state of the lymph - it can take more that 30 minutes to move the full length of the limb - or longer!

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ulverin
ulverin
in reply to Lynora

Thanks. I'm pretty sure I was there for over 30 minutes. They did not look at lower abdomen this time. It was confusing because my first scan flow number (?) was 14 which is not so bad at all since 10 is considered normal. Do you know what this number is? Have you had that test?

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ulverin

Or could it just be that my lymph flow was very slow now? Last time I'd been swimming and treating it a lot but lately I've been neglecting my treatment some...

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Lynora
Lynora
in reply to ulverin

That may be one reason, but why didn't they scan the abdominal or inguinal nodes for uptake. Did they inject the dye into both feet?

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ulverin
ulverin
in reply to Lynora

Yes both feet, and then above the knee cause it wouldn't show anything. I really don't understand. If there's no superficial lymph function whatsoever, shouldn't my skin be way sicker?

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AnneBury
AnneBury
in reply to ulverin

Neglecting treatment unlikely to be helpful

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Niktcx

Where did you have the test done ? When my legs were scanned my left leg showed no lymph fluid moving from my foot upwards but in my good leg it showed normal movement from foot to knee. He said the lymphatic chanels above the knee are too deep to be seen on the live scanner.

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CCT67

I've been in your very shoes (but both legs,). I was told by the LVA surgeons Professor Furniss and Mr Ramsden that's it's impossible to do the surgery as the ICG Lymphography scan showed I have no lymph vessels at all. They also said have undeveloped/ malfunctions lymph valves and nodes. Could not have been a worse outcome of my consult with them.

I was in floods of tears, sobbing in front of them , as they also said in my case lymph node transfers was ill advised. That news was the last thing I expected to hear - I felt my world was caving in, both legs with no option of surgical intervention. How could that be?!? Really it could get no worse. I cried continueously for days. Signed off work for depression. Went though a huge grieving process. All my athletics activities had stopped due to pain from LE and I had to accept that I may never return to them. Just walking normally was difficult on some days. All I could think was compression and wraps on both legs (toes to groin) is no way to live, no quality of life. And the pain on some days is unbearable.

Let yourself feel what you feel -all the emotions youre feeling are normal. It took me months to go through a bereavement process, and I got support from a psychotherapist through my workplace employee assistance programme. Lean on your friends and family for support. We'll be here for you on this site. Also Speak to your Gp about emotional support options.

You will get through this devastating news. I know it does not feel that way today. take one day at a time, one hour at a time if need be, for now. It's a difficult emotional road but you will be able travel it, it just takes time and use of all available supports sending you a huge huge hug xxx

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Marjol80

In my case there is no visible lymph movement starting from foot.I have lymphoedema in left leg for 13 years now. I have no option for liposuction or lymph transplantation at all due to recurrent cellulitis. Im on long term penicillin. i was going through grieving process for about 3 years. Im just 37. Just want to say I am happy with my life. I am bandaging whole leg from toes to the groin, but I have lovly children and husband. I understood how lucky I am with a little baby just 10 weeks old... people have a worse conditions. And of course I have a bad days and sometimes cry. I am sure you will get through it, it just takes time. Take care xxx

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ulverin

It has been now a year and a half since my right leg swoll. Almost a year and the left leg. I tried to get all the right treatment as soon as possible and now I'm so damaged that it's too late!? And all the trouble I went through with conservative therapy - that just in vain too?

I'm so mad at everything. No wonder people die so much.

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ulverin

Once again thanks for support! I answered some of you privately because I didn't want to spill everything on the Internet. But I'll be back to answer generally too.

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galtyboi

Consider yourself lucky you are getting scans, many got compression stockings and a tub of moisturiser and make do with that, me been one of them.

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Carolpa
Carolpa
in reply to galtyboi

I waited 3 months for appointment. Got measured, waited 3weeks for compression garment, wore it for 2 weeks, did more harm, swelling much worse. Waited 6 weeks for urgent appointment to sort. Measured again, now waiting for made to measure garment but not expecting it to fit. Trouble is, the "specialist" nurse I see only does 2 days a week lymph work. The other 3 days she is a district nurse. How can she gain expertise and experience in a complex field under those circumstances!!!

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galtyboi
galtyboi
in reply to Carolpa

Yes that is the trouble, there are no full time lymphedema nurses anymore, I myself was referred back to my gp holding my stocking measurements for him to renew for me every six months , so I guess it's a matter of moisturising and hope nothing goes wrong.Just got to live with it now and get on with life until a cure is found, and hopefully that will be in my lifetime.

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ulverin
ulverin
in reply to galtyboi

Why am I lucky if all I ended up with was false hope?

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AnneBury
AnneBury
in reply to ulverin

I think the false hope bit is a problem. My understanding is that many (if not most) patients are not suitable for surgery. I do think hopes can be raised.

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LegsEleven
LegsEleven
in reply to galtyboi

Me too! And because my lymphoedema in both legs is not caused by cancer, there doesn't appear to be any sympathy for my plight from the lymphoedema nurses. GPs are caring but uninformed.

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Bev-1966

Yes galtyboi me too, that's all I got.

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AnneBury

It may be that you don't have lymph vessels or your lymph vessels are too fine to work. In my case the lymph vessels below my knee are so fine (both legs) they just don't work (appreciating, though your issue is your thighs).

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ulverin
ulverin
in reply to AnneBury

All I know is I've had problems with blood flow in the legs, it didn't go up properly or leaked a little from the groin, that was found out after I was pregnant almost eight years ago. It didn't cause anything back then, I didn't even remember it until lymphedema occurred.

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veriterc

What a shock! But maybe advice from America might find a solution - their official websites contain so much useful stuff that I constantly refer to them - and NHS follows years later! See aftercancers.com/2015/09/he...

1 like
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ulverin
ulverin
in reply to veriterc

Thanks for the tip veriterc!

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sammyvan

So sorry to hear you are battling - and worried. I guess we all have bad days, sometimes everything just gets on top of us. I know that I am [ at the moment ] an absolute nightmare! Because I have been on high dose antibiotics for four weeks now, and nothing seems to be improving really, I am having really weepy days.

I have never had ANY scans! Handed a bottle of Dermol, told to keep skin moisturized, and then almost a year later fitted for compression garments! Been on them some time now, but only get new pair once a year?

All I can offer is - make each day a new adventure! Some days I don't want to even get up - lazy maybe, 'cos I know I have to do all the cafuffle on the legs before I can even have my tea! Don't dare wander around without strapping up first. This forum is a ''God send'', as I feel I can unload here, and not be looked at sideways! Unless one has this disease, understanding is difficult. NEVER give up - there is always something around the corner!

Sending hugs....

sammy

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ulverin
ulverin
in reply to sammyvan

You are not lazy! I often feel misunderstood cause once I do manage to get out of the house I look normal, although it's been hours of work to get there and it wont be long that my legs ache again. And four weeks of antibiotics, that's tough too. I hope you find something to enjoy today and wont be too hard on yourself, hugs!

1 like
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sammyvan
sammyvan
in reply to ulverin

All these months later... have just seen your reply! Thank you for your good wishes, and encouragement. We do need to stick together, don't we. Knowing there are others who understand your feelings makes life more bearable.

Hope life is treating you well....

sammy

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Lymphoqueen

I just had this test last week and although my LD is very mild (in my right wrist and hand), I was otherwise an ideal candidate, but had the same result as you. I think as it is 8 years, my vessels, they would have worked with have collapsed. I don't fancy the node transplant cos hey wasn't it removing nodes that caused this? plus the surgeon said it does give an unsightly lump/scar. he will keep an eye on me and give me lipo in the future if my quality of life deteriorates. So far I have not had cellulitis, not once.

I do believe the drug is in the pipeline so fingers crossed. x

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ulverin

Do you have a problem with your vascular system? I had that tested and it showed I have malfunction in the blood vessels as well. I thought maybe that's why my superficial lymphatics went beyond repair so quickly. I had cellulitis only once, at the same time when the lymphedema started. Since then I've even had small scratches, but no cellulitis ever. It is weird how we are different with the same disease.

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