Lymphedema

[Shari]

We did some tests last week and determined that a large part of the swelling in my ankle is lymphedema caused by a compromised lymphatic system. The PT thinks a large band of scar tissue circling my ankle joint is impairing blood flow, and now, also, lymph flow.

The Occupational Therapist (OT) showed me last week how to do a simple lymphatic drain on that ankle/leg. Tonight, I couldn't remember a step so I looked it up and read about it. While this condition is manageable and not dire, its not the "no big deal" I thought it was, either.

Ugh.I'm tired.

 

[InsaneCdn]

Hi, Shari -

On top of everything else on our collective plates... we still have to remember to "mother" ourselves...

Sometimes it helps to remember that, if we neglect ourselves, then we won't have what we need for the rest of the crew... so, take care out there!

Hope you have a happy Monther's day - even if you have to mother yourself...

 

[tiredmommy]

Aww... {{{hugs}}}, my friend! It must be hard to hit this obstacle after making such an incredible recovery.

 

[crazymama30]

I hope the Occupational Therapist (OT) will (or maybe has) taught you Lymphedema massage. It is very effective and helpful. Also if you can buy a pair of good (not the kind you get at the drug store) support stockings, they can be very helpful. Usually you have to be fitted for them, and they are not cheap but worth the money. Jobst and Juzo are some common names. They even come in colors now.

 

[Hound dog]

Ditto crazymama.

(hugs)

 

[Jena]

aw i'm sorry.......... try to have a good day

((hugs))

 

[1905]

Insurance will cover that. I have lymphadema in my arm, and bought the cutest sleeves from a company called lymphadiva's. Insurance pays for it regardless of whether you need a custom fit or not. I pay up front and send them my reciepts along with a prescription from the dr.

 

[rlsnights]

Usually the first step in manual lymph drainage is to gently do surface massage of the main areas of lymph nodes. That means the base of the neck on each side and the groin area near the creases/top of the thighs. This helps clear out the lymph fluid in that part of the system to make room for the lymph fluid you are pushing that way.At the neck you want to massage from close to the head toward your chest. The groin you massage from the top of the leg toward the belly. The strokes should be very gentle and just move the skin not the deeper tissues.

Then you gently do surface strokes on your leg starting at the thigh. You want to stroke from distal to proximal on the leg. That means you start farther away from your torso and work toward the torso. You do the gentle strokes like that gradually working your way down to your ankle area and foot always stroking distal to proximal.

There are massage therapists who specialize in treating lymphedema using MLD. If you can afford to go to one of them they will do a series of daily massages to reduce the swelling as much as possible. After each massage they will wrap your leg in special bandaging to keep the swelling from returning.

Once you've gone through that process and reduced the swelling as much as possible then you get the special compression stocking for your leg and use that daily. The stocking should be ordered by your doctor because it needs to be for a particular level of compression depending on your situation.

I've had lymphedema in my arm for 20+ years and would be happy to answer any questions you have. You can PM me or ask on the board. Whichever.

Patricia

 

[susiestar]

I hope that this is something you can manage. My mom had problems with this for a while and it wasn't fun. The massage is extremely helpful when done properly. Don't forget to turn receipts in to insurance or get them to provide the items through their durable medical equipment supplier. Shouldn't be a big deal with a dr rx.

I am sorry you are having to deal with yet another problem. Will you need surgery to break up the scar tissue? I know sometimes it is helpful.

 

[Shari]

Thanks for the info. I didn't thinking was any big deal (and it's not, but sure can be if not addressed) until I read last night. Best not be blowing off those massages I'm doing (not that I was, but...)
I do have compression hose. Been wearing them for about 3 months now. They are the jobst, $45/pair, but I'm not sure if they are helping or not.
I really still can not complain. I am so far ahead of schedule with my recovery and this and tendinitis is about the only setbacks Ive had.

 

[Star*]

I can see where Raoul and you in the barn with a jobst and a massage would be a good thing.....sounds like a fun game of FARM CLUE.

 

[Shari]

We haven't seen raoul in a long time....
I'd go for that!

 

[Star*]

I know - and I'm taking Spanish at USC.......It's the first language I'm taking in my series of learn as you get older in life. If I master this? Then I'm taking either Latin or Russian. So far -I'd just like to master the difference between I want and I'd like.......and today I think I said : Because I don't want to fill in the blank - Instead of I would like that hat......Fritzy brain....Fritzy brain. But fortunately for me the Hispanic lady was like - Take the hat for free. - I think - either that or I ripped her off and walked off with a stolen hat.

 

[TerryJ2]

Aw, Shari, I'm sorry.
I have two friends with-lymphedema. They both wear garments--one on her upper arm, the other a full pr of tights with-the toes cut out. It makes a huge difference.
Best of luck managing it. I'm so glad they taught you that massage. It will really help.
Keep it out of the sun.

 

[crazymama30]

The degree of compression is what helps the stockings to work. It is meausured in mmhg. 20-30 is pretty light, and 30 40 is really pretty tight. They should be really hard to get on. They are doing something Shari, you just may not realize it if you are wearing them every day. If your swelling is just in your lower leg you may only need the knee high stockings. Keep doing the massage, and usually the Occupational Therapist (OT) will do some too and sometimes use special wraps.

 

[Shari]

Does it go away eventually? If so, what kind of time frame.
I hurt so dang bad tonight I could cry. I think it's just from 'regular' swelling tho.

 

[crazymama30]

I don't believe it ever goes away, but you can manage the symptoms and it should get better. I would make sure your Occupational Therapist (OT) is trained in Lymphedema massage, there are several certifying agencies, and I don't really know if there is one that is better than another.

If you can elevate it while you watch TV or do other things you usually do while sitting that should help. Maybe ankle pumps or some sort of leg movement would help. The condition occurs when the Lymph system is damaged and cannot move the lymph fluid out of the extremities. The Lymphatic vessels do not have any way to "move" the fluid up and out except by muscle contraction, so maybe moving the muscles would help?

I would also find out if thigh high (oh, and they are a big PITA) compression stockings would be of more help for you. Make sure you are fitted for them by a specialist.

 

[Shari]

I was afraid you'd say that. Ugh ugh ugh.

I had a standing workstation installed at work yesterday so I can stand and move around instead of sitting all the time. Probably goes without saying that after I sit for any period of time, I quickly get very stiff, whereas on weekends when I stay moving, I don't. I guess I'm now hoping this extra moving will help with the lymph system as well as mobility.
My pt is telling me to stay in the socks. The Occupational Therapist (OT) is saying I don't have to, yet everything I read and what you guys are saying is use the socks... I think I'll call my surgeon and figure out how best to tackle this.
This is a real downer.

 

[susiestar]

I am sorry it hurts so much. Please make SURE you have a list of the warning symptoms of blood clots written out and POSTEDd in several places. The bathroom mirror, next to your bed, by your computer - places where you will see them daily. If you start to have problems they can go in and put a little screen in the major blood vessels so that clots cannot get to the rest of your body. I know several people who ended up with those screens.

You may want to see if you can find someone to do accupuncture. I have an aunt who says it helped her more than almost anything else when she had lymphedema in her legs. A tens machine might also be helpful - check with the docs about that. It is a little gizmo that hooks up to leads and sends a mild electric current through your muscles. The leads are like stickers and you put them around the muscles you want to treat. You adjust the current and it is wonderful with muscle problems. Insurance paid for mine but they sold the same thing at our county fair last year for two hundred bucks.

I hope that you feel better soon and that this doesn't keep you from enjoying anything at all in life!