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#148824 - 04/28/12 09:20 PM Lymphedema blues
plantgirl Offline
Supporting Member (50+ posts)

Registered: 11/02/10
Posts: 74
Loc: North Carolina
Since my surgery Ive been suffering with lymphedema in my face and neck. My ENT wants me to do physical therapy with a certified lymphedema therapist but alas, there are none for about 75 miles. Why is this treatment have so few trained therapists? I found out there are only 50 in my state. Ive been online looking for info on how to massage yourself and found a few videos but I also read that if you do it wrong you can make it worse. Anyone have any ideas for me? It would be very much appreciated. Thank you


Edited by plantgirl (04/28/12 11:15 PM)
_________________________
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16

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#148827 - 04/28/12 10:36 PM Re: Lymphedema blues [Re: plantgirl]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8277
Loc: PA
There are a couple members who are experienced with these types of massages. Im sure Cheryl and Kerri will be along to give you some pointers.

Hope it works!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148830 - 04/29/12 12:06 AM Re: Lymphedema blues [Re: ChristineB]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
I drove 75 miles to see a lymphedema specialist who had been through the specific training for head and neck. Personally I would get the appointment with the one 75 miles away, take someone you trust with you that has a good memory, etc, as you go through the steps. You will practice and then come back & they will check to see if you are doing things the correct way.
Those two appointments will probably tell you most of what you need to know. They will want you to come back to see what your progress is, but really you can learn this in a couple of times and be checked two or three times and be in good shape.
At least this was my experience. They will probably have you purchase a compression "garment" for your head and neck, which you will wear for a while. I still do the massage at least once a week, but haven't worn the garment since going through the early training.

Most of them will work with you like that because you come from a distance. I am sure you can learn much of it from a video, but different physical or speech therapists will teach it differently, and it would be best if you had someone to check what you were doing. At least this is my opinion. The object is to move the lymphatic fluid from the face down the trunk. Things need to be done in a specific order, first preparing where the fluid needs to move and then moving it.

Best,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#148831 - 04/29/12 01:16 AM Re: Lymphedema blues [Re: AnneO]
terrib Offline
Senior Member (100+ posts)

Registered: 02/05/12
Posts: 143
Loc: MN
My husband has been going numerous times and yes there are none close by. We drive 2 3/4 hours for appointments and massage. He has 4 types of therapy he is suppose to be doing but this is his favorite. He went yesterday and said it was heavenly. The therapist did the massage and he says it feels wonderful. They did teach me how to do the different exercises but he says they do it much better. The also gave him a special nylon mask to wear that looks really goofy. Sometimes he wears it in the car with sunglasses and a hat. Give it a try, it realy makes a difference. Before he went the first time his right side of his face looked like he had a good botox job compared to the other side where the wrinkles showed up. Just a couple treatments made a huge difference. Now he has fluid building up under his chin that they are working on.
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.

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#148832 - 04/29/12 01:43 AM Re: Lymphedema blues [Re: terrib]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4804
Loc: Toronto canada
Hi yup... Both sets of advice are very good I would suggest a few visits to get a feel for it then you can likely do it on your own. wink

Okay I went back and found a great post from EllenB. This may help... Thanks Ellen!

Originally Posted By: EllenB
Hi Tracy and anyone else who is interested. The theory is that you need to stimulate the lymph nodes below the area where the fried ones are then encourage the fluid down to those that are pumping more efficiently.
Here are the directions:
Light pressure, stretch and direct the fluid where you want it to go
Cover the skin with as much of your hand as you can, conform to the shape of the area
Clear adjacent lymph nodes before massaging the face

1. Neck lymph nodes to the side of your windpipe on both sides. Stretch back and down toward the collar bone 5 times
2. Neck lymph nodes further back. Stretch back and down toward the collarbone. You are now closer to the ears. 5 times
3. Just above the collarbone in the hollow. Stretch down and in toward the neck. 5 times
4. With Spock hands-two fingers separated from other two. two fingers in front of ear and two in back, small circles in place. 5 times
5. Just below the armpit-put the webspace of your hands up as high as you can, then drop the hand onto the body. Stretch back and UP toward the armpit 5 times
6. NOW you are ready for the face. Put your whole hand on the side that had the tumor, stretch the skin back toward the ear then down toward the jaw line.
7. Now the final strokes- half circles with the fingertips along the cheekbone to your ear then from cheekbone down toward the jaw. OK to repeat 6 and 7 as much as 20 times or until you don't see the swelling.

VERY IMPORTANT if you reach 20th stroke on the face, it is time to start over at step 1

Three times a day

Hope this helps


Edited by Cheryld (04/29/12 01:53 AM)
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148849 - 04/29/12 07:29 PM Re: Lymphedema blues [Re: Cheryld]
plantgirl Offline
Supporting Member (50+ posts)

Registered: 11/02/10
Posts: 74
Loc: North Carolina
Thank you everyone! I definately will be making appointment with a PT regardless of mileage. I woke up this morning with a hard lump on the surgery side of my neck. It hurts pretty bad when I touch it. Im guessing its a blocked node. I ordered one of those compression masks on Amazon too. Thanks again everyone and Cheryl, thanks for posting the massage directions!!
_________________________
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16

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#148850 - 04/29/12 07:39 PM Re: Lymphedema blues [Re: plantgirl]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
You want to be careful about supplying yourself with this (garment for your face & neck). The lymphedema expert at MD Anderson told me you have to be careful about not going too tight on it (you've got some important vessels underneath). Mine was actually a prescription. If you don't know exactly what to do you would be much better off consulting the expert in your area.

Regarding the hard lump on your neck, should you have that checked out first? It might be what you say it is, but I do not feel really comfortable with guessing on those things.

Anne


Edited by AnneO (04/29/12 07:42 PM)
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#148852 - 04/29/12 08:15 PM Re: Lymphedema blues [Re: AnneO]
plantgirl Offline
Supporting Member (50+ posts)

Registered: 11/02/10
Posts: 74
Loc: North Carolina
Originally Posted By: AnneO
You want to be careful about supplying yourself with this (garment for your face & neck). The lymphedema expert at MD Anderson told me you have to be careful about not going too tight on it (you've got some important vessels underneath). Mine was actually a prescription. If you don't know exactly what to do you would be much better off consulting the expert in your area.

Regarding the hard lump on your neck, should you have that checked out first? It might be what you say it is, but I do not feel really comfortable with guessing on those things.

Anne



The bump wasnt there yesterday. Im calling to make appt with my Dr tomorrow.


_________________________
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16

Top
#148864 - 04/29/12 11:40 PM Re: Lymphedema blues [Re: plantgirl]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
Hi,
My doctor told me that a lymph node can swell up in a matter of hours if it is lymphedema, so hopefully that is what it is, but better safe than sorry. Because you are having issues with the swelling that is probably what it is.

Sending positive thoughts your way,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#148872 - 04/30/12 05:37 AM Re: Lymphedema blues [Re: AnneO]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4804
Loc: Toronto canada
Good luck, fingers crossed its nothing!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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