Meet others living with Head & Neck Cancer: Introduce yourself

I have posted before about throat cancer surgery and reconstruction flap surgery Feb. 25th, 2026. Removed 1/2 base of tongue and portion of lower palette.
Did anyone have damage to their spinal accessory nerve? Shoulder droops with severe pain in the clavical/shoulder. Doing physical therapy but slow going and hard with pain.
I was on gabapentin for three weeks and quit it as it didn’t work and felt horrible. Use norco5 when unbearable, but doesn’t really work. Had mri, shoulder is intact so it has to be the nerve, damaged but not cut.
I read where many have this after neck dissection, but haven’t seen anything posted. I simply don’t know where to go for help.
Any help appreciated. Surgeon said it would take a year to heal, what to do during this time?
Still swallowing troubles, having a hard time, doing therapy for that too. Ugh.
Casey

Hi @logi

My accessory spinal nerve is damaged (called Brachial Plexus Legions/Neuropathy) which is why my left shoulder sags (droopy) and trapezius muscles wasting away with winging of the scapula which includes limited range of motion.

I had 35 rounds (7 weeks) of Photon radiation for a total of 70Gy (Gray) and 3 rounds (211mg each) for a total of 633 mgs of Cisplatin chemo for tonsil cancer back in 2008 but no surgery. What made it even worse was that 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. I have since read some posts here and found my own device online called Hugterra which helped relieve some of those neuropathy symptoms and discomfort coming from neck and shoulders. It provides 15-minute daily sessions that blend massage, stretching, Electrical Muscle Stimulation (EMS), and heat therapy, enhancing circulation, relaxing tense muscles, and restoring the neck's natural curve.

I also get PT from a specialized head & neck cancer therapist. Both the Hugterra and PT takes the edge off for me. Nerves take forever to regenerate and sometimes do not. All of this has not stopped me getting to the gym as I am an avid weightlifter for over 40 years, but certain angles of exercises are definitely more difficult with this nerve issue.

Good luck on your journey.
Rob

Hi, non HPV oropharyengeal (soft palate) cancer that spread to lymph nodes of neck. Diagnoses on November 2, 2023. Chemoradiation to treat. Had one scare in March 2025 and had a small part of my tongue removed. The medical term is partial glossectomy however literally it wasn't much. Post treatment for almost 2.5 years. Tired of side effects such as radiation fibrosis and swallowing issues. I remember my radiation oncologist told me to keep swallowing during treatment no matter what. I did this in tears every morning. Now speech therapy to strengthen my muscles. Has any one else gone through this? Im grateful and blessed yet feel defeated often. When I returned from FMLA I was let go afterover 12 years.

Hello all! I am so excited for this new space for head and neck cancer survivors and caregivers. I'm hopeful that we might support each other as we journey.

I was diagnosed with squamous cell carcinoma ten years ago, at age 24. My dentist found an ulcer under my tongue that looked suspicious. The biopsy was positive. I have had five additional diagnoses/recurrences since then: right neck nodes, floor of mouth, mandible, soft palate, and left neck nodes. I have undergone many different surgeries, chemotherapy (erbitux, cisplatin, taxol, carboplatin), radiation (IMRT and proton-beam), and immunotherapy (PD-L1 inhibitor). I am currently one year cancer-free!

I've learned a lot over the past ten years, and I am hopeful that I might support others as they face diagnoses. I am looking forward to connecting through Mayo Connect!

My name is Lou. In july 2019 I had a craniotomy to remove a squamous cell carcinoma in my cavernous sinus. Since the cancer was wrapped around my carotid artery it could not be entirely removed. I had 9 chemo, 35 radiation and have been receiving Keytruda treatments every six weeks for about 4 years. My CT scan shows no change since my surgery. It might only be scar tissue, but I choose not to give up treatment to find out. I have lost sight in one eye and have Trigeminal Nerve Damage. My current concern is that I suffer various levels of pain along the incision. This did not occur until about 3 years ago. At that time a Neurologist said there was no problem with the incision. I take 3,600 mg of Gabapentin/ day and find Ketamine is very helpful knocking down trigeminal nerve pain. Has anyone else experienced pain along their incision, if so did it go away or how did you cope with it. They never found cancer anywhere else and it remains a mystery of how the cancer ended up in my cavernous sinus.

@ingleside You are dealing with a lot after that surgery. I have not experienced pain with incisions, but have had increasing tenderness over time, just assuming this is normal for a healed incision 14 years later. What I have found recently is that the tenderness and tightness can be improved with direct massage and stretching and fascial release. Dealing with fibrosis and atrophy of facial and neck muscles years after radiation has me seeking out therapies. Red light therapy has been most helpful, combined with the stretching and massage. It sounds like your pain is more nerve pain, especially with it responding to Gabapentin. Have you ever researched medicinal mushrooms? The Lion's Mane mushroom is helpful for nerve healing. I could tell a difference in improvement of facial nerve function when I started it 6 years ago even though my facial nerve paralysis was post surgery since 2012. It's just a thought and I began learning about mushrooms with a book entitled The Rebel's Apothecary by Jennifer Sansouci.

I’m Lois and I was diagnosed with squamous cell cancer stage 4 on parotid gland. I did immunotherapy and it shank the tumor. Then had surgery on April 2, 2026. They wanted me to do 6 weeks of radiation but due to all the side effects I decided against it. Praying I made the right decision. So scary. Now waiting for a MRI in August. My face is still numb.