| Joined: Jul 2013 Posts: 17 Member | OP Member Joined: Jul 2013 Posts: 17 | I have some lymphedema above my scar on my neck due to my neck dissection. I am going to lymphedema therapy and it's working, slowly, but it's working...Anyone else have this problem and if so, what are you doing to get rid of it and any suggestions besides therapy to get rid of it.. thanks..
DX-JUNE 22, 2012 STAGE..III HNC--TONGUE HPV--QUESTIONABLE SURGERY...JULY 17TH, 2012 40% OF TONGUE REMOVED FREE FLAP FROM MY LEFT FORE ARM (DIDN'T WORK) RND RT XERSOTOMIA
VERY BLESSED
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Joel, I have some lymphedema (turkey neck) due to my neck dissection but it varies in severity day to day. There's been a few days here and there where it's been pretty annoying but generally, it's not bad. It didn't come on until I started sleeping prone in my bed after sleeping in my recliner for 5 weeks after treatment so I'm sure it's due to gravity not allowing the fluids to drain. I have a chin "sling" for lack of a better word that I wear sometimes when I sleep and that helps some. Last week at my appointments with my team they felt it would resolve on it's own in time. They recommended sleeping propped up but I just can't get comfortable that way. In the mean time, I'll just deal with "gobbling"  "T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I had, and have lymphdemia, after three neck dissections, but the turkey neck from the ball under the chin basically subsided, and may be more fibrosis, leather neck, now on the left side neck all the way to my ear, left jaw, and maybe from working out with weights being I have a pec flap in my neck (my neck muscle was taken out) and my muscles are gettng bigger now, and so is my neck lol, really, and my chest was big before Tx anyway, so I expect it to continue unless I slack off. I'll get a full report on Thursday when I see my ENT. I have a sleep matic or similar brand bed, so the incline does help, and also does with the thick mucus as well. Sometimes it swells more from certain foods, occasinal beer, medicines, tooth infection, which is the purpose of the nodes anyway to rid the body of toxins, but most of my nodes are basically gone, but there are over 300 lymph nodes in the HN, most microscopic, unless they enlarged. Acupuncture may help, lymphatic drainage as mentioned, and there is liposuction being done in Nova Scotia, that reported good results, with no adverse effects, but I don't know if it's done elsewhere. Light exercise, like walking, swinging the arms above the head, swimming, sweating, saunas, and a trampoline gets the lymph fluids flowing, and helps with lymphatc drainage, but see your doctor first.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2013 Posts: 17 Member | OP Member Joined: Jul 2013 Posts: 17 | Thank you all for the advice, I really do appreciate it..
DX-JUNE 22, 2012 STAGE..III HNC--TONGUE HPV--QUESTIONABLE SURGERY...JULY 17TH, 2012 40% OF TONGUE REMOVED FREE FLAP FROM MY LEFT FORE ARM (DIDN'T WORK) RND RT XERSOTOMIA
VERY BLESSED
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Kris's lymphoedema has just resolved with time. 18 months post surgery it is barely there. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
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