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Lymphedema

EricaA's picture
EricaA
Posts: 33
Joined: Aug 2012

My mom was recently diagnosed with lymphedema. She's currently doing neck therapy which seems to be helping with some of the symptoms. Has anyone else experienced lymphedema after treatment?

hwt's picture
hwt
Posts: 1931
Joined: Jun 2012

I am currently going through neck massage therapy. Not only does it feel good but seems to be helping. George Baltimore is wearing a compression mask in his photos, so if you can find one of his posts you can see what the purple mask looks like. They cost about $250 to have one made. I haven't had a mask made yet but have had compression tape on my neck that lasts about 2-3 days. My problem is that if I don't go continually I revert back to being very swollen and tight the first hour after I wake up in the morning. From what I read, lymphedema is usually chronic which means it doesn't ever totally go away :-( The lymph nodes are just below the skin so this is a very soft massage not like when you go to a spa and they dig in to knead the muscles.

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

Especially for those of us that have had radiation...

Like mentioned, it's usually the lymphatic fluid building up because the normal paths of flow were damaged from the rads.

Eventually they will re-establish flows again, and swelling shoul lessen...

We call that being a member of "The Turkey Neck Club"...

There is a link on the SuperThread that offers how to massage. It was posted up by MarineE5;

Gentle Massage for the Head & Neck

Hope she starts feeling better, and continues to a healthy recovery.

Best,
John

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

My lymphedema stems from an operation I had last year to replace part of my jawbone. It's indirectly from the radiation in that the radiation from 2004 has left my neck hard as a rock. As John said, hopefully the flow of lymph will get better especially with the help of the massage. After my operation, my lips and chin felt like the size of a small watermelon. The skin was drawn so tight that it felt like it was going to burst. I started the massage therapy at the end of last year and continued through May. My lips have gone done to the size they once were but my chin could still use more improvement. Since your mother's radiation treatments were fairly recent, I would think that her lymph should start flowing like it should quicker than someone like me with a fibrotic neck.

HWT - I would check into the pricing a little bit further. I was told mine would have been $125. Are you in New York or California where prices are higher than the rest of the country? I am on SS Disability. Medicare does not cover compression masks however, the lymphedema center at the hospital where I had my surgery done applied to a charitable foundation for me. They covered the complete cost. You might want to inquire at your center about that.

hwt's picture
hwt
Posts: 1931
Joined: Jun 2012

Actually, I'm right in the center of the country...St Louis. My therapist is the one who gave me the name of someone that fits and makes the mask and the approx. cost. Sounds like I need to do some homework.

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

We are neighbors. I live in Eureka.

How about you??

Mike

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

I dont know where she lives, bit I think. hwt is treated at Baptist. Then there are you and Greg and me. I was just there ironing out some problems today, though my drive is a bugger. Almost 12 hours round trip. Sheesh thats a long drive.

Pat

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

I have it in my neck right under my chin, some days not as bad as others, I think I notice it more than anyone else. I had 39 rad treatments, my onco said if after a year , come on Dec 31st, and it's not a better , we can discuss therapy. But if this is the worse side effect I ahve I'll live with it.

Linda

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

The manufacturer that made my mask is Barton Carey. You might want to contact them to see how you can order them in your area. Their website is: Bartoncarey.com/garment_charts.HTML.

EricaA's picture
EricaA
Posts: 33
Joined: Aug 2012

Thank you for all your responses. They are very helpful. My mom is doing neck therapy 2 times a week, plus some neck exercises at home. She said it seems to be helping her a lot as well.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

Love Love LOVE my chiropractor!!!

When I started, my neck was a mass of fibrosis and lymphedema. Add L'Hermittes Syndrome to boot! I had maybe 25% range of motion and any time I looked down, I would feel a jolt down my spine and then I would spasm.

"This happens. It should get better in 3-5 years," was all the Oncologists could say.

Through weekly neck work and soft-tissue work, i.e. He drives his thumbs into my throat and breaks it up. Yes, it looks like he's strangling me on the table! But, the proof is in the pudding. 3 MONTHS into it, the L'Hermittes was gone. The fibrosis was starting to break up and now 20 months later, I have 100% range of motion and only one small spot above my Adam's Apple which is "thickened".

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Thanks, Doug! I've been thinking about seeing a chiropractor. Now, I definitely will. My neck is so stiff it frightens me and it's getting worse. If a chiropractor can break up the fibrosis, that would be fantastic. I found out last week that possibly the reason I can't swallow is that my hyoid bone isn't moving to start the swallow mechanism. My swallow therapist said this is probably due to the fibrosis. OMG, you've given me hope of eating again. Thank you, thank you, thank you.

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

I was able to relieve most of mine by working out at the gym doing some excercises that work your Traps and Shoulders. I also sit in a 180 deg dry heat sauna 2-5 times a week and stretch. I feel the combination of heat and stretching helps with the drainage.

If you cannot do this, find a good massage therapist who is certified in "Lymphatic Tissue Massage."

Good Luck

Mike

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