Modified neck dissection

I had TORS surgery in October for a base of tongue tumor. Luckily margins were clear and no chemo or radiation. Scan have been clear since. However I had a neck dissection and my left shoulder is weak and I had rehab and continue to do my exercises. I am thankful that is my main problem but right after your surgery they send you to a rehab person but that was not really PUSHED to me that shoulder problems after a neck dissection are common. So, I did not do the exercises as I was told. With everything goes down after surgery like that I think they needed to be more demonstrative when I met with that person as it was so many other things going on at that time. I didn’t really understand that I really needed to start doing these exercises. I didn’t go to the rehab until about 2 to 3 months later after my shoulder was very weak. Hopefully everything will go good for you but if they talk to you about your shoulder, definitely make sure you start those exercise exercises.

Hi, I had a radical neck dissection in 2023 on my right side. I had to rehab my shoulder for about 3 months, but for me that was the easiest part of my recovery. Your care team should be able to recommend a PT person to help you with recovery. Best of Luck! You got this. Eric

Thank you very much for your information. It really helps to hear from those who have actually gone through the procedure. I will be conscientious of the rehab.

Thank you, Eric, for your information, I really hadn't thought much about the shoulder and now I am seeing I should have. How long after surgery did you start your rehab? I live about two hours from the hospital I am having the surgery so would think they may arrange the rehab closer to home, although I would like to go the original hospital, it really isn't feasible.
Hope your recovery continues to go well and I appreciate your encouragement.

I started rehabbing on my own about 3 weeks after I got out of the hospital (I was in for 1 week). You can find basic exercises online. I began working with a PT person about 2 weeks after that. I also live about 2 1/2 hours from the hospital, so I found a therapist closer to my house, as in the beginning, you will go regularly.

Hi @red31,

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. 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. As others have said here is get a second opinion and make sure it is from a cancer clinic.

I had hesitated with getting the neck dissection too since I had no cancer in any of my lymph nodes on my pet scan, but I went to the top two cancer clinics who specialize in the head & neck cancer in WI, and both had proposed the exact same treatment option, so I felt comfortable. It was really to make sure the lymph nodes and other sections of the neck all had clear margins thus, I avoided any radiation and chemo additional treatments especially since I had both back in 2008 with my tonsil cancer. In addition, I don't know if I would have accepted any more radiation either since it probably was the cause of my tongue cancer.

Time will tell if it was the right decision in getting the neck dissection. I definitely have some Neck Fibrosis, Lymphedema, Swallowing, Speech, and weak shoulder issues (including range of motion) 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.

Good luck on your journey and God speed.

Hi @red31 Welcome to this group that no one ever wished or dreamed of joining. Yet here we are.
It is really great that you can pick the brains of actual patients who have been through the journey you are beginning to venture. These good people can answer questions or give advice which your health care providers cannot, simply because they do not of course have this patient experience.
“Courage” -Churchill.

After I underwent radiation for cancer at the base of my tongue, they recommended a neck dissection. I was hesitant but then decided I didn't want to play "what if" should the cancer come back. It has worked out for me, though from hindsight I would strongly recommend PT afterwards to ensure a more complete recovery.

Hello @red31 Im sure you will find many experiences by patients who have been through this here. I had a select neck dissection with my original surgery of subtotal temporal bone resection for SCC in my ear cancel. While all nodes were clear, the facial nerve was involved in tumor so that was severed and partially removed, then reattached. The proximity to the superficial parotid salivary gland made the surgeon remove that also. But I have not had any recurrence in that site in 13 years. Dry mouth is an issue always, abnormal nerve control of 1/2 my face called synkinesis is something to live with, and some muscle loss down neck and to shoulder. My surgery was done at Mayo Clinic Rochester and oddly it was never recommended to have physical therapy afterward, although I believe that would have been helpful. I have no swallowing issues but must treat the dry mouth with nighttime tablets to stimulate saliva production. I know that lymphedema can be a serious problem for some. I feel like the risk of recurrence outweighs the side effects of this surgery.