Advice on TKR when born with lymphodema

[Canada91]

Born with Lymphodema told growing pains Both legs both arms Diagnosis confirmed by cancer surgeon Need TKR from 2014 constantly told Amputation risk too high. Gladly accept help advice friendship

[Chocolate-e-clare]

Hi Canada91 - I have seen people with lymphoedema get TKR's - why are you being told amputation risk is high??? Ideally, get your weight down, stay away from cellulitis/infections, and hopefully you will become a great candidate for surgery if that is what you need (sounds like you do). Hugs.

[Canada91 in reply to Chocolate-e-clare]

Thanks so much for answering. I had 2 orthopaedic surgeons after examination both say the risk was too high I am in my 60 s so by time I got my diagnosis after 31 yrs I was told after my lymphangiogram that compression stockings wouldn’t work neither would de bulking My particular type Is MILROYS disease which is different than normal or acquired Lymphoedema I even went to the hospital in the ukwere the artificial hip was invented and specialises in ortho procedures. That consultant got in touch with ST GEORGES London where the main clinic for this condition is and I was told that as I was born with this condition and was diagnosed 31 years later my condition was too advanced to perform aTKR and basically Sorry get on with it as best you can I think I have just been very unlucky to have it in all limbs But I am so pleased for those of you out there who got diagnosed early on and have had some success with your treatments x Please don’t be a stranger So pleased you replied 🙏🏻

[Chocolate-e-clare in reply to Canada91]

Hello again - I am a therapist. I treat a lady with Milroy's. She has had a knee replacement, and still has her leg. It sounds like you have seen some excellent doctors, so if that is their advice, they must have good reasoning. If it is a while since your last consult, it would not be harmful to go back for another opinion - lymphoedema knowledge and management keeps on progressing.

[Canada91 in reply to Chocolate-e-clare]

Thankyou so much for your reply and knowing someone else with Milroy’s. My last assessment by physios and orthopaedics was last year. I was also referred to the PAIN CLINIC and was so excited when asked if I would like to try acupuncture but I had to come back the following week to meet with Head of physio. Even though I’d had no problems having injections in my legs They refused to offer it to me. Whilst I am and have been really depressed about the way I look it’s the knees that are stopping me being mobile. But any of you who received treatments after early diagnosis try anything and everything offered to you x Here whenever you want to chat to someone else who has it in both legs and totally GETs IT 🤗👍

[rosyG in reply to Canada91]

Hi Canada 91 I can't answer your question but had bilateral TKR in August (I'm 77) and still having problems with one knee. It was very difficult -and still is at times- when there was a lot of swelling so I'm wondering if this is why the surgeons are reluctant as may feel your rehab would be very hard?- because of your usual swelling?

[Canada91 in reply to rosyG]

I know the additional pain from having knees that need replacing is miserable. I even went to the hospital were the first artificial hip was invented because of its reputation of excellence in joint replacement. They were the 3 rd opinion I’d got so after being told that chance of amputation was higher than a successful outcome I felt I was left with no choice. So I will carry on as best I can with my families help. Good luck on your knees and hope the situation improves for you soon Thankyou So much for replying. It’s just nice to know that your not alone 🙏🏻