Consultant appointment

[Lynne-byn]

Hi everyone I've just had my 1St appointment with consultant & I'm so confused. I'm not even sure I should be in this group. Firstly the consultant said that I was having problems with left leg, no both legs I told him. He then asked to see my left leg so I purposely showed him my right leg 1St. He then asked to see other 1 & I obliged stating both legs are the same & also stomach. He told me I didn't have lymphedemia as if had the swelling wouldn't go up & down it would swell so much then celitus (spelt wrong) would set in. What??? He then went on to say I had pitted edema, as when he pressed the indent was staying, which is true. He then said I'd need a scan to see if anything causing it, that 1 scan was very invasive but other 1 not. I asked which one I had to get, he said unvasive one to start with that I didn't need other one, on 2nd breath said I might need other one. He then told me that the only treatment was compressions which would have to be worn full time. He said to start with get knee ones if needed could get whole leg ones. This seemingly is the ONLY thing that can be done. I know from being on here that isn't true. I'm okay to fly 👍 just need to save 1St lol but he probably wouldn't need to see me again, unless an under-lying condition. Their was so many times he contradicted himself, so much so that I came out & the nurse asked if I was allowed to go on, told her he'd said about getting measured for compression now, then 2nd breath that I could go ahead & make appointment with nurse at gp surgery. The nurse told me not to worry I wasn't the 1St to come out confused. Well yeah now I have a whole lot off confidence that I'm gonna be treated properly for the right condition NOT!!!! Sorry for such a long post but I really am confuddled, he said this, then something different contradicting himself. Oh yes the scan he's doing is on my left leg even tho it's the right one that swells up more. I have problems with hip (right) side & walk with crutches. I'm also waiting for results of a new xray on it as it showed a mass & consultant was worried it may have got bigger. They don't know what it is it just showed up on scans. Goodluck if you got thru this apologies again xxx

[Jennymary]

I'm not surprised you're confused.com at the moment, i must admit i did lose the thread of your post but i would have thought that to scan both legs to begin with if only to see if one is a lot bigger than the other, why not ring the LSN in the next few days to see if they can offer any advice/support, they may even have leaflets about your issues that if you're a member they could post on to you, good luck x

[Lynne-byn in reply to Jennymary]

Apologies again for long post Jenny I've contacted the lymphedemia clinic here & as they've never received a referral they can't help x

[Lynora]

Hold The Phones.......!!!! I got to the bottom of your post (who was this idiot, so people know to avoid him????!!!!) then I read the final 4 sentences...... Mass? WTF?

[Lynne-byn in reply to Lynora]

Hi Lynora hun, a Mr Lewis tbh he through me off course kinda wish had of let my friend come in, but you never know what they say & I'm a very private person. I'm glad you got thru it again EVERYONE APOLOGIES. I guess was trying to give you all/most off the important info. They explained it as a mass drew a diagram off hip joint & I'm nearly sure it was bone side scribbled it in. I'd never heard they'd found anything so this was 1st for me. Said repeating xray to see had it grown x

[veriterc]

Your Post shows why we MUST all work together to get better NHS care. The Consultant sounds as if he hasn't a clue, and was probably just filling in. I feel for you. Suggestions:

Become a member and contact Lymphoedema Support Network. Ask if they know someone in your area you can get an appointment with.

Complain to GP/hospital and say you want 2nd opinion. You are entitled to this, but NHS doesn't like them because it costs them more money. But stick to your guns.

Post comment on this forum saying where you live, and ask members if they can recommend good Consultant.

You could try phoning 111 - theoretically they should take your details, then later on a specialised doctor should phone back. This has worked well for me in about 80% of cases, and you don't have to take their advice if you feel it isn't good.

Good luck - but don't accept such bad service.

[Lynne-byn in reply to veriterc]

Thankyou Veriterc, I'm in Northern Ireland, I have checked this morning & he is a surgical consultant. What is 111 hun? I was for joining/becoming a member but now questioning if I have lymphedemia or is it something else. Am I still okay to stay here? I mean can I join if don't have diagnosis? I came across this group when nurse in a&e told me she was sure that's what it was. I have received more help/support here so am more than happy to join. I love each & everyone off you, thanks hun x

[veriterc]

Sorry - 111 is the Govt. run health advice line but apparently it doesn't operate in NI (don't know if that is a good/bad thing!). Stick with the LSN - just because you don't have straight Lymphoedema doesn't mean you can't get same treatment. Like you, I have a weird variety, but have just been put on two lots of diuretics which is freaking out my NHS GP but the heart Consultant seems to know what he is doing so am sticking with this, and it's starting to work.

Trouble is, each NHS specialist has their own little patch, and they don't consult with each other - dogs in the manger! Oh - if only we had copied the Europeans when we were still in EU!

[Lynne-byn in reply to veriterc]

Thanks Veriterc, I'll sign up tomorrow. Your right they don't talk to each other, like my stomach problems could be linked but no one problem one consultant. I've waited from start off August for that appointment, still confuddled 🤔. If your treatment starting to work then why should you change, I wouldn't. Rang the lymphedemia nurse who covers my area no referral told me can't help & to go back to gp. Normally a consultant would tell you see you in such & such time, but I'm in no hurry to see him again x

[veriterc in reply to Lynne-byn]

Right time to be sneaky. Go to website of best private hospital in your area and look up names of suitable Consultants. Google their spec. and you should come up with on who sounds suitable, and details of where they work for NHS work (most do both). Then go to your GP and INSIST on a referral. They may kick, but you have the right. I have done this, and usually GP caves in because they know its law. See aftercancers.com/2016/12/ho... for more info. And best of luck.

[Lynne-byn in reply to veriterc]

Thanks again x

[lovesradio]

Lynne you are very welcome here, do hope you find support from a more informed consultant and lymphoedema practitioner. They are hard to find but worth weight in gold when you do. The LSN do have great info and you can take their leaflets with you as lots of health professionals really aren't that well up on lymphie stuff.

[Lynne-byn in reply to lovesradio]

Thankyou 😀 I bought flight socks in poundland they are a wee bit big but definitely an improvement on swelling, downside have myself scratched to bits 🤔

[galtyboi]

My advice to you Jenny would be to go back to your GP and ask for a referral to a lymphedema clinic first,thats what he or she in my opinion should have been done before seeing any consultant.The lymphedema clinic would be able to advise you better and explain thing better to you,and if a consultant was needed one could be recommended by them.get the referral first Jenny and take it from there,I think you will get better results in a less confusing way.good luck Jenny.

[galtyboi]

Lynne I mean ,Sorry.

[Lynne-byn]

Thanks! X

[Whitesugar in reply to Lynne-byn]

It may be worth you asking your GP what his/her thinking is behind sending you to see a surgeon? What are they looking for? Most swelling problems need investigating to eliminate a serious cause, but a surgeon is not usually the way to go. Ask lots of questions, it's your body. Good luck and health.

[Lynne-byn in reply to Whitesugar]

Thanks white sugar 😀 love most of these names. Gp sent me for an x-ray but it didn't show what he needed to see, is asking for another mri scan. He said I have a mass/cyst around hip joint wants to check it hasn't grown. My last mri scan was well over a yr ago I was told it was clear, he is the only person to have ever mentioned it to me. I also have dunno if slipped disc but something to do with discs in back. How are you? X