Is having a lymphoscintigraphy scan very painful?

[suzi1]

Would you have this test again? How long does it take?

[Christo]

Mine took about an hour - on whole trunk and legs - not painful - so don't worry.

Good luck - just be glad you are getting some proper tests done.

Cheers

Christo

[suzi1 in reply to Christo]

Thank you so much for replying. Doctor says they inject into the spaces between the toes on each foot. Is this what you had?

[jinger]

I've heard of a lot of people being offered this test but I haven't and I've been diagnosed over two years now. Is it the norm to be offered it? Not that I'd go through with it due to having a bit of a needle phobia - could be why they haven't offered it to me

[wendyjames]

He'll yeah it is. I had mine in1988 when I was 11. I've never experienced pain like those injections ever since. I had 3to injections in each foot and had to lie completely still for 4 or so hours. I dont know if its different these days or in other countries, I am in australia. People will tell you different things as everyone is an individual and has their own pain threshold and sensitivity levels but id rather tell someone the truth then they are prepared and if it goes smooth and pain free then all the better for you. Good luck and keep smiling.

[Harveygirl]

Hello Suzi1. I had this test done last year on both legs and my pelvic area and the only painful part was the injections between my big and first toes. It took a couple of hours but I wasn't being scanned for all that time - I had to wait 90 minutes between the first and second scans. It is the "gold standard" test for lymphoedema and the information it provides for your consultant is invaluable so it's well worth having.

Good luck!

Fiona x

[Squinny in reply to Harveygirl]

Hi Fiona, having had the test done can you tell me what you are hoping the information will lead to? I have only just heard about the tests as not been offered them but wondered where next once it's done?

[Lynora]

I agree with Fiona - it is SOOO worth having done - answers all the questions for the specialists - and especially when it isn't offered everywhere.

[becky565]

Hello there, this test sounds interesting, So it could detect what areas of the body are affected by lymphoedema ? i have it in my feet and legs but have wondered if it is also in my stomache and genital area following surgery for cancer 20 years ago.

I find it amazing how inconsistant the care and treatment that is offered across the country. So this forum is very helpful. I am having MLD treatment at St Georges hospital in 2 weeks time, other than the compression stockings this is the only help i have had in years.

Always nice to know what else is out there.

Good luck, i would be interested in the outcome.

Rebecca x

[suzie_danger_girl]

mine was not in any way painful, but I feel like maybe I had mine in the top of my foot?.....

I have full body primary LE so I guess it's going to depend on where you have your lymph but it is most definately worth it so they can really see where it is. I had the impression that Dr Mortimer looked surprised how bad my lymph circulation was, I don't think it was so self evident from my overall size as I am very fit so whilst this is a way to tell to look and measure it doesn't say as much as actually looking clearly at the flow.

[Squinny in reply to suzie_danger_girl]

Morning, just wondered if you would elaborate about what you do for fitness? I am reasonably fit and would like to improve but the advice of which sports to do/not do seems to be conflicting. Do you find anything particular works well?

Hoping for an appt with Dr M soon, did you find it useful?

[pigsty213]

I had about 3 scans, 2 in the morning lasting 30 minutes each and one in the afternoon, they weren't painful at all and not that claustophobic. Hope this helps

[Law_Student]

I had the tests done in Belgium May this year. See lymfecentrum.be/en/. It was not painful at all. I had 2 lots of lymph mapping tests, both between my toes. However, I was given an anaesthetic first. This was administered by injection but it was just a very slight pin prick. Then a few minutes later I had the proper injection which inserts the green dye and I didn't feel this at all. Later on in the day I had another injection, this time in between the toes of both legs. 2 nurses pricked both feet simultaneously after saying, "1,2,3". Then I underwent a complete body scan. Again, it didn't hurt at all. Later on in the afternoon I was shown the results on a computer and I could see for myself how inadequate my lymphatic system is.

[Squinny in reply to Law_Student]

This all sounds so efficient, will you be following with the surgery next? May I ask have you secured this treatment via the NHS or are you self funding?

[Belinda3]

Hi, I had this scan in february this year, the injections in the backs of my hands & feet stung a bit but thats usual with most injections, had a scan done immediately after then returned an hour later for another one, very straight forward & relatively painfree. I have primary Lymphoedema and lipoedema. I'm still waiting to see my consultant re the scan results

[Harveygirl]

Hi Squinny. The scan is purely diagnostic but it enabled Prof Mortimer to be 100% sure of the diagnosis and the extent of the problem and to recommend treatment. In my case that was 3 weeks of 3M Coban bandaging followed by compression garments to be worn all day every day and MLD massage. I started the bandaging in January and had no idea how restrictive it was going to be - I could not wear shoes and walking was a challenge. Also I found it painful and after 3 days I could not stand it and had to take them off. The whole experience was so traumatic for me that I am ashamed to say that I haven't been back to start again. I really should go back, although it means 3 weeks of being housebound. I think it would be worth it as long as the pain could be controlled. In the meantime I have horrible swollen legs and feet and low self-esteem. It's a bummer, eh?!

Fiona x

[wendyjames in reply to Harveygirl]

Hi harvey girl, please go back and start your treatments again. I had to put it off for years as bandaging was the only way and I had no way to get to hospital and back daily for six weeks. This year my therapist said its bandaging or a wheelchair. She is using farrow wraps on me as coban wouldn't be strong enough and this has more mobility. I waited 12for weeks for my wraps to come and have clocked up 1to week today. It hurts like he'll but after 3 days I had lost 7 kgs and 10cm in one spot. Its still killing me but I saw calf muscle definition at yesterdays appointment for the first time since I was a teenager. Please give it another go -to yes these four walls are maddening but imagine not being able to walk around in the future. We are all here to keep up your spirits shen times are tough.

xxx wendyjames

[Law_Student]

Yes I am planning to have microsurgery in Belgium in October this year. I am paying for the treatment myself then I shall make a claim for a refund of a proportion of the costs under the provisions of the EU directive on cross border healthcare. See: nhs.uk/NHSEngland/Healthcar...

I promise to let you all know how I get on.

[syrup01]

I had this done earlier this year, and following a little anaesthetic wipe in the areas the injections were not even uncomfortable, the worse bit was that the whole scan took about 8 hours (on and off) and it is not the most comfortable machine to lay still on.

[bikerchic]

I'd like to know the answer to that, as I never had that scan. I've only had a doppler scan (like an ultrasound) which diagnosed my problem initially. Thank God I have never experienced pain with my condition, and I've had it for 7 years.

[brzlw2]

Hi, I had this scan a couple of months ago - mainly to assess whether I will be a candidate for microsurgery or liposuction. I had an injection between big and next toe on both feet (although I only have lymphoedema in one leg) - it stung but only like a normal injection would so don't worry about it. It's then a long morning of waiting - I had a scan about 40 minutes after where you lie quite still and then go back after 2 hours . Because my leg is quite swollen it takes the substance a long time to travel so then I had to go back another 2 hours later which I wasn't expecting - so take something to do/read just in case. You don't get any information on the day - you have a follow up with your consultant (mine is in August as he is so busy) . Good luck with your scan x

[shanty]

Could anybody let me know where they have been able to have the lymphoscintigraphy scan done funded by NHS? Which hospital ? Many Thanks