Anyone had neck dissection surgery? What are your tips?

Had a partial glossectomy in February 2026. Followed by radiation treatment, 30 sessions at 60 grays. Doctor panel at hospital decided that chemo therapy was not necessary. A biopsy of the 59 neck nodes removed during surgery confirmed that all were negative for cancer---that probably justified not having chemo. Four teeth removed during tongue surgery because they were not in good condition---they were correct in doing that. On feeding tube for weeks after surgery, which was not a big poblem since I am not going anywhere. Had a Trach for a few weeks--that required careful daily care. What I was not familar with was that I got lymphedema, something I was totally unaware of and unprepared for. Mainly in neck, upper chest, and left shoulder. Daily exercise has resolved the left shoulder problem, but neck and chest are a daily battle. Use a Tactile Pump twice a day, and that is great and could not be without it. Big difference with Tactile Pump. Most importantly, is that I found very few FULLY qualified Lymphedema Therapists (CLT) within 100 miles. Yes, many Therapists say they can do that, but not true. Must get a therapist fully trained by a lymphedema schooling (130 credit hours) plus a practice that is dedicated to lymphedema so they have 10 or 20 years experience. I have been burnt before by Therapist who tell you "I can do that" and lack experience and knowledge resulting is poor (or worse) results. The Therapist I used for 25 sessions has 20 years purely Lymphedema patients and many being NECK and HEAD. Someone who does not have this experience in NECK and HEAD I would not use. I drove close to an hour to the sessions and well worth using a person who knows what they are doing. I interviewed that therapist ahead of time, as advised to do by a medical professional, to make sure she is CLT, graduated the lymphedema training, is LANA certified, etc, etc. To my surprise, I found out that as a rule, most doctors have little detail knowlege or training in lymphedema. Both my tongue surgeon, and my radiation MD with years of practice, had little knowledge of treatment of Lymphedema and both denied that it could be in your chest also, as proven to be my case. Great doctors (in their field), not knoledgeable on lymphedema. That is consistent with a finding (report) put out by Stanford University Medical School that most medical schools spent less than 1 hour of the 4 years on lymphedema. IF you get lymphedema, make sure you interview and get a fully experienced, trained, lymphedema therapist. Otherwise things will get worse with you, Lymphedema is not a curable condition, a best one hopes to stablize it so it does not get worse. A knowlegable lymph therapist will order for you (will know what needs to be done) as is the case with me--the Pump/garments with design needed for your condition, compression chest garments, neck compresson collar. My therapist also handled all the approval with my doctor, and the medicare approval filing. Note that a lymphedema therapist that is experienced in leg lymph but not in neck and head in not someone you want to use. Totally a different set of knowledge and treatment.

I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection surgery taking out some lymph nodes. This one was not caused by HPV and was most likely from too much radiation from my first cancer which was on my left tonsil (2008) as it is literally adjacent to it. You will also have to be very aware of the higher chances of getting aspiration pneumonia and lymphedema after these surgeries. My aspiration pneumonia came only 3 months after the surgery which was really bad as I had to go to the ICU and have 7 liters of infections fluid drained from my chest cavity over a period of seven days. I lost 15 lbs. of body weight from that, and I haven't been able to add it back on so far.

I definitely have some Neck Fibrosis, Lymphedema, Swallowing, Speech, and weak shoulder issues (including range of motion and droopy- (called Brachial Plexus Legions/Neuropathy) from it so far in which I have to get PT from two different specialists (swallowing/speech & lymphedema- get them now) for all of these problems. I also suggest you get the pneumonia shot.

In addition, I starting using a Hugterra device I purchased with some success. It does three things of massage, electrical simulation, and heat all at the same time for 15mins. Definitely helped my neck stiffness and pain which then helps swallowing etc. Some people on this site also use Tactile Medical Flexitouch Pump or Shiatsu Neck Massager.

Good luck on your journey.

I had a neck dissection on 10/28/24. I had a base of Last weekend tongue tumor that was taken out with the robot. Fortunately, I didn’t need radiation or chemo after that and so far there’s no signs of anything… Not going good! None of my lymph nodes were positive on the PET scan, but Dr. Van Abel took them out anyhow. That was her suggestion so I certainly followed her opinion. The biggest thing for me was, something that really wasn’t talked about much, my left arm is not working like it used to. I can still move it wherever I want but it’s weak. I did go to physical therapist at Mayo and they told me about some exercises, but nobody really pounded that in my head that this might be a problem. I ended up going to a local PT in my area and that helped but I got sick of doing exercises and said the heck with it. It still works fine but the muscles just aren’t there like it used to be. The area where they took the lymph nodes out is mostly kind of numb and a little tight when I turn my head. But it certainly beats the alternative of doing nothing and dying from something that is beatable.

Yes, I had a radical neck dissection in 1997. Cancer on my tongue and then it spread to lymph nodes. My ENT at the time said to me bluntly, an old-time military doc, “you need surgery and radiation, if you don’t do the radiation there is a good likelihood it will comeback”. I knew others who had the lymph node cancer and had surgery but elected not to do the radiation. More than the majority of those folk had it come back (support group). When I decided to do both I told myself I’m only going to do this once to give myself the best chance of beating this and still be alive. Get whatever dental work done before the radiation and let that oral dental work heal before you start radiation. Be prepared to drink high calorie liquid drinks, need ice cream for the fat content, need high protein easy swallowing foods. You will drop weight . So get your nutrition in order because sometime in week 2 or 3 you may not be able to eat like you use to. Prayers your way.

So sorry to hear about your recurrence. I had major surgery last November for primary squamous cell cancer on the inside of my left cheek. This involved a removal of 30 nodes and put a flap in the back of my mouth. The surgery went well, no pain at all post op, and only 1 positive node. My initial pet scan in January showed "artifacts" of which they were unsure of remaining cancer cells or from my dental work. Had 3 rounds of radiation following that, which has resulted in severe trismis. Am working diligentally on that with PT and dry needling. Anyway, another Pet and CT scan still showed artifacts in Trigone area behind my molar, so couple of weeks ago my surgeon did a biopsy under anesthesia, which is negative for cancer. So thankful!! I have another CT scan in Dec, and plan to live my life as a healthy, healed by the mercy of God pilgrim. I am 78 years old, and thankful for each day. I hope you have a wonderful team of oncologists treating you. I have developed a very close replies with my team. They are awesome!!Don't be afraid of the neck dissection. It's really not that bad.

I had a neck dissection due to salivary gland cancer and it spreading into 25 out of 26 lymph nodes so they took them all out. The healing of the incision went well. It starts from behind my ear and goes to the front part of my neck. My ear is still very sore but I have no feeling yet anywhere else. It’s been 7 weeks now. About 2 weeks post surgery I started feeling nerve pain which would come and go. At 3 weeks, it was constant. The worst pain I have ever felt. 1000 tiny knives stabbing me in my jaw area over and over. In the front of my neck it was a deep throbbing verve pain. Then there were electrical shocks that would come through. It was awful! They put me on Gabapentin which I think helped a little. Now it’s gotten a lot better but I can still feel it a little. I had nerves cut and new nerves grafted in though so I’m sure that had a lot to do with it.

good afternoon all, this is lilyann here. well, my cancer came back. just had the pet scan on the 14th of july and the dr. confirmed it with the results. locoregional metastic disease. lymph nodes doubled in size and metastised to the left supraclavical fossa. they want to do radiation on me. thing is, what teeth i have left are in bad shape. the other thing is: i don't feel up to sitting in a dentist chair and having my teeth pulled just to go and have some radiation to reduce the size of the lymphs. i am a middle age octogenarian, and lucky if i even feel up to the appt.s i just had went to, grocery shopping is a joke, my macular degeneration has increased to wavy lines all around me and that "heat radiating off the wet roads" when i look at the computer screen. like the optic migraine thing. they also call it "broken glass". the strangulation feeling in my neck has been on going ever since the biopsy of november 2022. thing is that it is worst being the growth of the tumor pressing on the windpipe. so my options given were the radiation or tracheostomy. my husband was diagnosed with parkinson's. the beginning of the month. the dr. said how we both qualify for home health care. i would love to hear from others about what they would do if in my situation. i know others have had those tongue flaps. wow, the crosses we all bear. god bless us all.

@smittyfromcuse You sound reasonably healthy and normal to me. Just hours ago, I got back from the body shop where I have come and gone for the past 2.25 years. I realized over the last three days that I have a lot of friends there, it's fun to be with them again. Perhaps this is the visit that will solve the occurrence of jaw infections from the beginning and the only reason to visit will be to bring them tomatoes from my garden.

@smittyfromcuse

I had tonsil cancer and a small mass. My doctor took it all out along with several lymph nodes. I'm about a year out and no one can tell I even had surgery, not even my best friend who I didn't tell about my cancer. My doctor was out of UCLA and had a lot of surgical experience. I did not have TORS. I had to have 25 rounds of radiation which has been the worst part of all. I would be definitely do the least amount of radiation needed. I would to find a Proton machine for sure. Something I didn't know about when I had the treatment.