Lymphedema in the neck after laryngectomy

Posted by msherfinski @msherfinski, Jul 18, 2020

Hi, msherfinski here. I am 2 1/2 months post complete laryngectomy. I am experiencing severe Lymphedema in my neck and jowls area. Has anybody else had this problem?? I believe the swelling is holding up my progress. Thanks for any input.

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@msherfinski

Was it in the neck?? Thank you for the info!!

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No in the arm but a very severe case. If you have not reached out to them I really would suggest it. Ask to speak to Dr. Liu;s office.They are doing wonders for this type of stuff, let him know (if you are) willing to try something. He is probably one of the most detailed doctors we have ever seen. They also work with you financially so it really helps.

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Yes I have also suffered from this I am 1 1/2 years from treatments- I didn’t have the surgery so I still have my VC and larynx but my airway is so scared from radiation I may have a trachea always but I was swelling same as you are and I am using the lymph pump at home it is better for head and neck - but you may have to fight with insurance to get this but worth it, get the pump if you can.

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@msherfinski

Just got back from seeing the Lymphedema Specialist. Like I thought it's going to take excercises, massages and compression to get rid of the swelling in my throat area. When they told me after my laryngectomy that they tested 81 lymph nodes and none of them were cancerous, I didn't know they removed them for testing. This is why I'm so swollen. Oh well, another obstacle to try to overcome!!

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i have ymphedema and was referred to a lymphedema specialist. All the help I got was to be given compression treatments and to have the salesman from the company come in and try to sell me a system costing me, after insurance payment, over $1,000. The salesman lost interest in me when I insurance would not pay for this expensive machine. Told me I didn't have good insurance!
Any way, all this therapist did was put me in the compression leggings for about 30 min. and leave the room. Never told me anything about massage being available etc.

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I had right neck lymph nodes removed and jugular vein. I have had a lot of swelling. Been three weeks and still swollen. Dr not concerned. Drained once. My concern is I start radiation in three weeks and I’m sure my neck will Went for swallow consult. Dr said you have lymphedema and hard to get rid of yourself. I’m concerned how much worse it will get with radiation.

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@lynkidd

I had right neck lymph nodes removed and jugular vein. I have had a lot of swelling. Been three weeks and still swollen. Dr not concerned. Drained once. My concern is I start radiation in three weeks and I’m sure my neck will Went for swallow consult. Dr said you have lymphedema and hard to get rid of yourself. I’m concerned how much worse it will get with radiation.

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I would have your Doctor explain every bit of the risks that go with that! knowing what my husband is dealing with right now because of Radiation. Which caused his Edema and now is in a Trach because he could not breathe. I will follow to see other pointers because it is a struggle. Much luck and prayers

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Unfortunately my treatment starts in 12 days so can’t go for therapy. Swallow and speech doctor taught me how to massage. I’m only having radiation on the side where cancerous lymph node removed. I’m praying it will be ok.

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Absolutely having this problem with my Husbands Larynx Cancer Radiation Treatment. He has had to have a Trach put in place so he could breathe because of his Doctors not catching his Necrosis early on when he was complaining of pain and not able to breathe. Well now with this Trach comes slow healing and Doctors back tracking on what they said they were going to do. Which was reverse this Trach! But now because of his Edema in his neck causing some constricting in his breathing we have to wait!!!

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@mindyt

Yes I have also suffered from this I am 1 1/2 years from treatments- I didn’t have the surgery so I still have my VC and larynx but my airway is so scared from radiation I may have a trachea always but I was swelling same as you are and I am using the lymph pump at home it is better for head and neck - but you may have to fight with insurance to get this but worth it, get the pump if you can.

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So my husbands ENT Doctor is suggesting the Hyperbaric Oxygen Therapy to help open his airway and help heal his Adema. "Only needing a mm. to satisfy his reversing the Trach!!!!!"

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@lynkidd

Unfortunately my treatment starts in 12 days so can’t go for therapy. Swallow and speech doctor taught me how to massage. I’m only having radiation on the side where cancerous lymph node removed. I’m praying it will be ok.

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Many prayers for you. Radiation is NO joke. here I thought my husband will slide thorough this stage 1-2 Larynx cancer because he did not have to do any Cemo. I was so wrong!

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@stephanie101

Many prayers for you. Radiation is NO joke. here I thought my husband will slide thorough this stage 1-2 Larynx cancer because he did not have to do any Cemo. I was so wrong!

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So sorry about your husband. I have had three chemo and 12 radiation. So far just some mouth sores. Hope I get through this with no throat closure. I’m concerned. Just able to eat soft foods due to mouth issues

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