Anyone had a total radical neck dissection?

Yes, I just went through this in November. Actually, had to go through it 3 times in less than 2 weeks. Had radical neck dissection surgery to remove a cancer at base of tonsil cavity along with inflamed lymph nodes. Was a success, however a lymphatic leak developed after surgery and they had to re-open my neck a second time to stop the leak. Subsequently, they determined through a biopsy of the thyroid that I also had thyroid cancer (unrelated to the primary). They re-opened my neck a 3rd time and removed thyroid along with some additional lymph nodes.

Like any surgery, not fun, but it was necessary. I got through it and my neck incisions are healing nicely. Initially, the neck scars are a little disconcerting but they will fade over time. I did have some neck muscle weakness that I had to rehab with physical therapy for a few weeks afterwards but otherwise no lingering side effects. FYI, I am 60 and was otherwise in good physical shape prior to the surgeries.

salish33, thank you so much for replying back to me. sounds like you held it together being this was all done within the 2 weeks. so glad it was successful being everything was so close together. i have the stiff neck thing going on to where it seems like its getting worst in trying to turn my head. i also like the fact that you have no lingering side effects being they opened you back up 3 times. i can't imagine. i turned 80 in dec. so all of this is a big concern for me. they said they don't look at age. so we will see. thanks again for letting me know about your adventure. sounded awful scary really. wishing you wellness and happiness.

I have just completed my third radical neck dissection. I have been dealing with thyroid cancer for almost 17 years now. This time it moved into the retropharyngeal area at the base of my throat so they dissected that area as well. I wish you well and hopes for full and complete healing.

Hi @tcsurvivor4, I'm sure @lilyann and @salish33 will appreciate learning from your surgical experiences.

When did you have your third surgery? How is recovery going? If you had a tip to share, what do you wish you had known before your first surgery?

well, i don't know about a 2nd or 3rd, i am having a heck of a time with this and its 8 days post surgery. still having a hard time swallowing, can't hardly talk, the tylenol is making me so sick, i only take one pain pill at bedtime. i know it was no piece of cake for any of you but i just don't believe i could back through more of the same. now, i feel as if i have full blown flu, aches and pains. thanks for letting me vent. wish you all the best

I’m sorry to hear you are in such bad pain. I had a lot of pain in my upper back after my surgery, which they told me was due to the positioning. I was given Tylenol in the hospital but it did not help…. I couldn’t lay down or lean back because it hurt so much! After being up most of the night after the surgery, they finally gave me something else for the pain so I could get a little sleep….. the pain in my neck didn’t bother me, but the upper back/ shoulder pain was terrible!
(I do not like to take medicine because I often get a lot of negative side effects. ) When I was discharged I was told to take Tylenol for pain… it didn’t work in the hospital and it didn’t work at home! My family suggested taking something for muscle pain and suggested Advil. I finally got relief when I tried Advil and sat with a heating pad on my back…. I was not taking any other medicines so interactions were not a concern. I don’t know if the Advil made me tired but I was finally able to sleep.
If your whole body is sore it might be due to the positioning during surgery causing muscular pain; maybe you can ask your doctor if you can change the Tylenol for something like Advil to relieve the muscle pain? It really helped take away the pain so I could get some rest. …it also has fewer side effects than a prescription! Good luck!

I had surgery on January 13, 2023. I am 4 weeks out today. It has been a very difficult recovery so far. I had a parotidectomy, left and right neck dissection and a retropharyngeal dissection. I am dealing with being unable to swallow anything other than soft foods and feeling of having a golf ball stuck in my throat. I have quite a bit of nerve damage on the left … droopy left eye, lower left lip and arm and shoulder issues as well as lymphedema. I am doing physical therapy for that starting next week. I am scheduled for a swallow test Wednesday and will likely do swallow therapy. I’m hoping it will help. Eating has become a chore and there is no pleasure in it. And I have noticed that food doesn’t taste the same either.
If I could offer any advice, it would be to learn all you can from others who have been in the situation. And make sure you are informed of all the things that can happen later on as well as making sure you have a good surgeon…and always ask questions! You have to be your own advocate.

The surgeon had to cut the muscle that helps you swallow in order to get to the mass and pathology showed extensive cancer into the soft tissues.
I would love to hear from anyone here who has experienced the same issues. They have recommended 6 weeks of radiation treatments, 5 days a week. The side effects are daunting. Especially since I will have radiation to the entire neck, lower jaw area and base of my throat where there is already a build up of scar tissue. He mentioned I may end up on a feeding tube… I have a few weeks to decide if I am going to do the treatment.
Any words of wisdom from others who have been here?
Thanks in advance!

hi tcsurvivor4, jan. 31, 2023 i had my surgery, couldn't save the right vocal chord, full of cancer. the cancer attached itself to the jugular, thorax and other areas and they had to cut around all of those organs to get it out. the pathology report is suppose to be ready in 10 days. they said the nodule was the size of an orange. i can breathe, thank god. all of my back and neck hurts all the way up to the top of my head. thing is, i am having a hard time talking and when i do its then i want to start coughing. i do drink alot of water and i get up alot during the nite, so again, i am wetting the one and only vocal chord. i said the very same thing trying to eat some oatmeal this morning, it is getting tiresome, i went on another site to see who else is complaining and rightfully so, and actually learned that to lean forward and bend your neck to your chest to swallow. well, good, it sure did help. sometimes you have to go further out of the box to see how some others are handling their situations. my biggest problem now and before the surgery was the coughing, bad enough before surgery, but, afterwards, scary because of tearing sutures and have always heard it was hard on the heart to be coughing so much. i am very tired and have been pushing myself to do this and that which they said i could do everything i done before the surgery, eat whatever i wanted, work around the house. of course, the lifting thing is a no-no after any surgery. i should feel better in a few days, no, its not the way its been going. so i will see the operating crew on the 16 th of feb. so i wish each and everyone of you a better day tomorrow. prayers for all of you as i think all of you are so much braver than i. god bless

I’m so sorry that you are going through this. I completely understand about the pain. I’m still dealing with pain myself 4 weeks later. The surgeon made me think I would be back to normal pretty quickly as well… I think they have never been through it so they have no idea what it’s like in recovery!
Thank you for the tip on swallowing!! I will definitely try that.
Praying that you have some improvement soon. Rest and be easy on yourself, and know that you are not alone.

Hi!
I had a modified neck resection years ago along with an accessory nerve injury. The pain was terrible, but 20 years later, I’m still here. Although it has changed my life, I’ve learned to live with the new normal.