Lymphedema and frozen shoulder

[gingoss23]

i have Lymphedema currently in left arm and hand...... so i have questions for others

also have frozen shoulder and more questions

[Lynora]

Question away! Frozen shoulder is miserable. Do you have a sympathetic physical therapist? Is he/she also a Lymphedema therapist? I see you are in the US - have you touched base with Lymphedema support groups on your side of The Pond?

[Snobie]

this is crazy! I have a frozen shoulder too right now! And I have lymphedema. They did an MRI and they said they see a lot of fluid there. The orthopedic is meeting with me in two weeks to discuss surgery options and I’m not even sure if I should have surgery but my arm is like extremely uncomfortable.

[WardijaWardija in reply to Snobie]

Hi. Really glad I spotted your post.Following a traumatic fall 3 years ago, where I broke my left shoulder,, I was left with a massive lymphodema on the upper half of my left shoulder.

I too have a totally frozen shoulder/arm but my hand is OK.

Due to Covid early 2020 other than an initial appointment with an experienced Orthopaedic surgeon, nothing was done to repair my shoulder. Since found out I need a surgery, a full reverse shoulder joint and have been scheduled for it 3 times, all of which were cancelled due to the pandemic.

During this time, I've done a lot of research about having arm/shoulder surgery next to the site of the existing lymphodema, it kinda suggests that one might end up with another one ?? Is this your understanding ?

I contacted my surgeon and asked the question but he just blew me off and didn't give me a straight out answer.

So I'm kind of glad that I've had this 3 year delay or otherwise I wouldn't have known then, what I think I know now.

The 3 years also gave me time to push for a referral to one of the UK's leading Lymphodema centres of excellence and I actually have an appointment in March.

I'm hoping to get tests to see if I still have any working lymph nodes left in my left arm and if so, if its possible to bypass any damaged ones and be "re-plumbed" so to speak.

I have several other complex conditions including heart, stage III kidney disease and insulin dependant diabetes and take a mountain of medication to keep me alive, but for me, what bothers me above all other is the Hugh lymphodema on my arm, its just so disfiguring, I hate it with a vengeance. Lymphodema treatment with a customised compression sleeve is not effective at all. It never showed any sign of reduction.

I've all but given up with it, it's hot and uncomfortable with no positive benefits, I'm pretty much done with it. Does any of this strike a chord with you and other sufferers?

[Snaomi]

I have had frozen shoulder (was in so much pain. I couldn't sleep)and saw an orthopedic doctor. I was given a special injection on the back near the shoulder. It worked almost immediately. I k own we are told with lymphedema we are not to have shots in that area. I checked with my doctor who handles my lymphedema and he said if you need surgery or injections, that as long as you put your garments on it will be okay.