Lymphodema after radiation

Do not be patient
It sounds like you haven't seen a CERTIFIED LymphEdema Therapist - get to one ASAP. Not just some PT that claiims they know 'ALL about LE'. There are some PT's and OT's that do actually have training/education and Certification (My CLT guy also has his Masters iin OT.)

You will need to be wrapped to get the swelling down so that appropriate measurements can be gotten to get the right fit for sleeve/glove there are different compression levels which can make a huge effect on the effectiveness of the sleeve/glove (For me, I have to have lightest compression level as heavy compression makes mine MUCH worse.) Not everyone can fit in the 'off the shelf' sizes - I don't at all. My arm is too long for the circumference measurements to be properly fitted by the OTS sizes. My hands are even worse for getting gloves as my fingers are somewhat webbed and between the middle 2 fingers the webbing goes almost 1/2 way out to first joint so again standard is unbearablly painful. So all my garments have to be custom made.

There are also night sleeves/gloves that work in a passive way for night time. Some are able to control with night garments only. - again mine is custom and I use an opera length isotoner glove under it (per my LE guys orders) and I have 2 over sleeves that I can add if needed.

You need to be taught MLD (Manual Lymphatic Drainage) massage to aid in the drainage. Done wrong - it can cause a lot of damage. For some of us we need a bit more 'help' which can come in the form of a MLD machine which is programed to do the massage. My machine is a Flexi- Touch and is great for me - remember not all need them. To run a session on Flexi Touch takes an hour. It starts by massaging the upper leg/loweer body to empty the nodes in that area, goes upu to the upper body, then to the upper arm, then to elbow/mid arm and finally to lower arm hand (takes about 1/2 hr). It then reverses the direction as it has isolated the different areas to have encouraged drainage iin un damagged areas too. It will start at the fingers and in sort of a 'rolling' action continue up, over and down ontinually for the next 1/2 hr. Really works great but they are not cheap

Please see a CERTIFIED LE Therapist ASAP. IT will not go away on it's own but there are many options for controling it and the sooner the better. Remember that we are each unique and none of us fit into a predetermined mold.

Winyan - The Power Within

Susan


My LE started almost 3 yrs ago while on Taxol. And my Drs were the first to notice.

disneyfan2008 said:

sorry to hear of your
sorry to hear of your issues...I have no advice just wanted to say thinking of you..

Denise

I hope you can get some help
I hope you can get some help and soon. I had radiation, but, I've not gotten lymphedema as of yet. From what I know though, it can happen at any time. I hope yours gets better.

missrenee said:

Venus--I second everything Susan has to say
I've been dealing with this condition for almost 3 years. Thank God mine is rather minor, but lymphedema can come about at any time and can get worse at any time, so I use many methods when mine acts up--Flexi-touch machine, sleeve/gauntlet, massage from my certified lymph. specialist, kinesio taping. I really baby that arm--no heavy lifting on that side, no B/Ps or blood draws.

Hoping you can get the help you need soon. The lymphedema specialists are few and far between.

Hugs, Renee

Lymphedema can happen at
Lymphedema can happen at anytime, not just after surgery. There is help out there for you. Try to get into a lymphedema physical therapist.