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Hi. Had throat cancer surgery Feb.25, 2026. Removed 1/2 tongue
Back of mouth and portion floor of mouth. Supposedly they got all the cancer but have mri in august. It has been a horrific recovery. Lost 30 pounds and extreme difficulty eating, swallowing.
A big and constant pain is the spinal accessory nerve was damaged. My shoulder droops, the clavical sticks way out and the pain is significant all the time. Started gabapentin weeks ago, taking 900 mg. It’s not working and have been on norco since surgery which now I can’t take with the gabapentin. Use heating pad but seems to make it worse. Between the pain and swallowing I cry a lot. Swallow therapist says I have to stop clearing my throat which I do constantly. I do it all the time even after the exercises she gave me to stop. Eating is a nightmare. I am on a soft chew diet and choke most of the time. They put off a feeding tube to see if swallow therapy would work. Between the constant pain using my arm and choking, I am a mess(and trying not to clear my throat) I am freaked out. It was a brutal surgery with reconstruction from my forearm and thigh. Anyone relate to this?
The spinal accessory injury?
Thank you. Casey

@logi What a constant misery for you to endure. Know that nerve tissue is very slow to heal, but healing is possible. I have had healing in my damaged facial nerve for years after the surgery. Sometimes we forget the basic pain relief and numbing of an ice pack. Have you tried that? After my thoracic surgery and a chest tube that is the only thing that helped me sleep at night. Also Lidocaine patches either OTC or stronger thru your doctor's prescription. They might take the edge off. I like the Salonpas brand but there are many available.
Nerve pain is tough to control. I would be looking into acupuncture and asking your PT about a TENS unit. Also a serious discussion about a PEG tube for nutrition while you are trying to manage all of this. Have strength. This is torture but there is a light at the end of the tunnel. I am 14 years out now. Hugs to you.

@logi I'm sorry you've had to go through all of this. Losing a portion of your tongue complicates things substantially. It's a lot, but you are not alone. Most of us have had challenges beyond which most people are accustomed. I've been dealing with aftereffects for 20 years, so I can tell you it gets better, or maybe I've just gotten used to it. Allow yourself to grieve what you've lost and hold onto the hope that things will improve. Wishing you well.

Hi @logi

At age 39, I was officially Stage IVB T2N3M0 Tonsil cancer on my left side caused by HPV and 3 infected lymph nodes. I am now 17ys out (2008 diagnosis) where I had 35 rounds of Photon radiation which amounted to 70 Gy (7weeks) and 3 rounds (211mg each) for a total of 633 mgs of the platinum-based chemo Cisplatin.

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. 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 (Amazon has a few copycats that are cheaper, but I wanted the original one) 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.

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.