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Lymphedema

mechanicman2's picture
mechanicman2
Posts: 16
Joined: Jul 2012

I don't know if any of you have delt with this, but my husband had cancer way in the back of his tongue. He had that removed and a mass behind his ear on the right side, his jugular, his tonsils, a salavary gland, the nerve in his neck ( now he can't raise his arm but so far)(all on the right side), and they cut him from ear to ear and removed the lymph nodes in his neck. Well, with that said. Having no lymph nodes in his neck,the fluid in his face does not know where to go, so his face and lips are very swallon and hard. The Dr. wants him to see a Physical Therapist who treats lymphedema, but they are very hard to find. We found one, but he will have to drive a little distance to see them, and he is not one for driving far away. Has anyone had to have this done and what is involved? I feel so bad for him because he has already been thru so much, and now this. But we have already gotten over the big hump, and now we have a bunch of little humps to climb. But God willing we will get over these also. Thankyou, Mrs Mechanicman

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

From your join date it looks like your husband is a couple of months out from radiation. With the surgery he has had, and the radiation, significant lymphedema is probably the norm at this point, although it certainly is unpleasant. After enough time goes by, most if not all of this will likely resolve. But physical therapy sure does help take care of this faster. You wont need a lot of sessions. Just a few to learn the techniques and you can do this at home. The distance is a pain, isnt it? We live over six hours from my treatment team. I was estimating that we have put over 35000 miles on the car, with my various problems.

Pat

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

a lymphodema specialist....I don't have it that bad (at least to me)...but the Dr. seemed to think I needed it. I don't know exactly what they do but massauge the neck and get the fluids moving...maybe once the fluids find an exit they leave? I don't know....

If we can learn to do this at home, then better for us...we have enough appointments on our calendars as it is.

p

hwt's picture
hwt
Posts: 1824
Joined: Jun 2012

I've been to a dozen sessions of neck massage therapy and it has helped. Mine is generally worst in the morning until gravity takes over. Some mornings, my neck was hard as a rock. They have taught me the technique to do myself and will gladly teach a 3rd party but my husband has done enough in the care giving department so I didn't want to add this. The nodes are just right below the skin so it is a very light touch massage nothing like a deep knead massage. Last Friday, I got a compression chin strap. I'm sure George Baltimore will pop in soon and show you his mask. I did not need the full mask and may just go with the neck ring in the end. God help any burglar that might break in here at night, between my husband's cpap machine and my chin strap, we'll scare the living daylights out of him. George has the name of the company where you can order a mask or strap. My insurance is paying for mine but George said there is assistance available for them too. I found the lymphodema more of an annoyance than painful. The therapist thought flying was not a good idea until resolved thus the compression strap. I would say a trip or two for massage and to learn the technique and get measured for a compression mask could be beneficial. Good luck

MarineE5
Posts: 744
Joined: Dec 2005

Mrs. Mechanicman,

I had issues with the Lymphedema after my Radiation treatments ended. I had similiar surgery as your husband, but the Lymphedema didn't show up right away. My Radiation Oncologist suggested that I have a Cancer Physical Therapist teach me the correct stretching exercises and gentle massage to correct the swelling in my face and neck.

In the Superthread above, there is a Stretching and Massage exercise that I was taught by my Therapist and hopefully it will be helpful. At least your husband can start the Stretching exercise at anytime before he sees a Therapist. He can try the gentle massage if he would like too, but if it doesn't seem to help after about 2 weeks, he will need to be shown the proper way to do it.

Here is the post I made some time ago....

http://csn.cancer.org/node/196680

Also, he needs to sleep at an incline for awhile to allow the fliuds to drain from his face and neck during rest. We have one thing in our favor, gravity works for us as we move around, the fluids do drain downward. One note though, if your husband still works and does heavy lifting, the Lymphnode system fluids move toward the shoulder, neck and face when working and bending over to lift items.

My Best to Both of You and Everyone Here

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Mrs. Mechanicman,

I’ve joined the neck massage club and learned the moves; it is easy and seems to work. I reviewed MarineE5’s thread (thanks skiffin16) and what he explained was almost identical to what I learned. I also got a mask, but like some have trouble wearing it. I do find myself gently massaging my face, neck, chest and belly (chest and belly when nobody is looking). I bet I only look like I am 55 instead of 56.

Good luck to you and your husband, I hope everything else is going well.

Best,

Matt

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Here you go...Face & Neck Massage from my Marine Corp Brother...

Face & Neck Massage

Thanks Matt, I was only the method of relaying the technique, Marine is the source of therapy.

Best,
John

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

I'm here. It's a little after 5 and I'm killing time til 5:30 at which time I need to leave for sinus surgery. If it's not one thing, it's another. I'm surprised hwt's mask was covered by insurance. Medicare would not cover mine. The therapy definitely does help. You would not believe the size my lips were after mandible reconstruction surgery last year. I haven't been wearing the mask like I should because everytime I put it on, I have to take it off to blow my nose. Hopefully today's procedure will take care of the chronic infection once and for all. He's going to make the openings to the sinuses larger so they don't block up as much. Gotta run and let the dog out so I can leave. Take care all.

hwt's picture
hwt
Posts: 1824
Joined: Jun 2012

Enter "The Mask' you are too funny! Best of luck with the sinus surgery today. Keep us posted.

mechanicman2's picture
mechanicman2
Posts: 16
Joined: Jul 2012

they really helped, sorry it took me so long to get back, but don't get a chance to get on here alot. I love this forum. It helps me so much. When things get bad and I don't know what to do, I come on here and usally get the answers I need. You guy's are all awesome. Everyone is so positive and upbeat. Kenny started his Physical Therapy a couple of weeks ago, but then he developed THRUSH (a really bad case), damn dry mouth, and had to stop after only 2 treatments.It was very painfull. Had to use his feeding tube for a couple of days. But he starts back this week. He was starting to get his taste back, but this medicine he is taking for the thrush has it so he can't taste again. He only has 5 more days of the meds. so hopefully it will be back again. He has a Dr. appt. with his surgeon and the Dr. to have the feeding tube removed this Friday (November 9th). He will probably be scheduled for his next PET/CT then. The Dr. said it would be in Dec. sometime. Thanks again guy's. It's so nice to have folks like u out there going thru the same thing we are. Makes u not feel so alone.

mechanicman2's picture
mechanicman2
Posts: 16
Joined: Jul 2012

Gunna ask about the mask also!

Tweety1480
Posts: 24
Joined: May 2007

My husband didn't have the surgery, only had the treatments.  10 months after the last treatment, the ent went in the neck and removed  nodes, juglar, nerve, and i don't know what else.  He had no swelling in his neck until this surgery was done Oct. 30, 2013 and now he's having the swelling.  Sometimes I wonder about what these doctors do.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

A lot, if not most of us here with lymphatic fluid drainage problems and the swelling (Turky Neck Club) was the result of radaiation treatments. I presume that surgey could also damage those same fluid paths, but I'd think the MD's would do their best to avoid damage...

JG

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

It's can and does result from surgery as well. Having had most of the level 2 nodes removed during surgery, I've become a member of the turkey neck club. I have a golf ball sized lump under my chin and additional swelling on the left side of my neck that varies day to day for whatever reason it pleases. There is accompanied pain from the swelling as well. A result of surgery and subsequent radiation. I've been told it should eventually resolve itself in about 1-2 years as the body finds new pathways to drain the lymphatic fluid. Specialized massage therapy can and does help. Unfortunately, I can't travel 2.5 hours to JH in Baltimore for the therapy so I'm playing the waiting game. There's no one locally certified in lymphatic massage therapy :(

Positive thoughts

"T"

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

T, i too have turkey neck from surgery.  2/28/14 will be 2 yrs for me and it hasn't gone down at all.  i've never had massaes just waiting for it to go away.  looks like i may have it forever.  one more gift from cancer.     :0(

God bless you,

dj

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

I changed my profile to show an image of some of my artwork. This is how I feel I look! I created a whole book of art work about my cancer treatments and how it made me feel Embarassed

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Cathy...

Myself, and also Marcia, soon to be wife of T (fishman) above are artist as well...

John

hwt's picture
hwt
Posts: 1824
Joined: Jun 2012

If you do travel and can even fit in one appt. for the therapy, they can show you how to do it on your own at home. It does get better! 

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Thanks HWT!

We were shown while I was in treatment but have forgotten. I do have compression bandages that I probably should wear more. Maybe I can arrange an appointment when we go in Feb for my followup.

"T"

MarineE5
Posts: 744
Joined: Dec 2005

Give this a try until you meet up with a Therapist of your choosing. I posted this a few times here and on another board I visit.

http://csn.cancer.org/node/196680

My Best to You and Everyone Here

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Thanks for the Link Marine! I had forgotten about that! 

"T"

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

well, share!!  post some of your work so we can see it. 

dj

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

Would love to see your art!

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

 I think she meant yours, I believe everyone has seen mine one time or another...

But for you, here's a few...

JP

s

 

 

JG

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

Well, I haven't JG! Smile

I have a whole website full of it. My cancer book is on pinterest and facebook though. I have a couple of people that think I should have it published and want to help me with that. That would be so cool! 

Here is my regular website though

www.cathyhorner.com

 

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

Those are fantastic!!!!! Beautiful!!

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

AMAZING!!!!!!!  U R AWESOME!!

thanks for showing and sharing.

dj

 

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Thank you...

Here is something more recent...

CM

It's a miniture piece... 6" x 4"..

John

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

john, r u pulling my leg....lol?  that looks like a 4x6 snapshot.  if u r'nt pulling my leg, you should be doing something professional with your talent!

dj

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

LT

JG

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

u r AMAZING!!

dj

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

I love this!!! Awesome John!!!

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