Meet others living with Head & Neck Cancer: Introduce yourself

I’ve been diagnosed with Chondroblastic Osteosarcoma of the left maxilla. So rare! 😭

Not quite two weeks ago I had a partial maxillectomy and a temporary obturator placed. The lump on my gum started growing last fall but was thought to be irritation from wearing Invisalign. In early March I had an infection in that area which kicked off a shocking progression of dental visits culminating in a biopsy and then on to an ENT surgeon and all the usual preliminary scans and tests, then, because the tumor was very small, surgery. Unfortunately the pathology report says “tumor present at margins” so now I’m waiting to see where this nightmare goes next. I still can’t believe this is happening.

@sarahbee56 I pray all will go well for you. I have an obturator and it is not fun. Luckily my SCC surgery which was a right maxillectomy, had clear margins. However since there was invasion of bone, I had radiation. It has been 2 years now. I had to have 5 teeth removed to get to the tumor and have the hole in my palate. Luckily I was sent to U of M which is over 2 hrs away. Excellent care team. I was told if I had it done in Midland Mi (close to home) it would have taken months and there is no one that could do it.

@roxanne43 thank you for your kind words and good wishes.

Hi. I'm Christian. I had neck and throat back in 2011 and was treated with radiation and chemo. I survived but have lingering effects. I am presently dealing with vagus nerve issues including syncope. I am looking for a neurologist who treats this. Any advice?

@cgoins1031 Hello Christian and welcome. Is your diagnosis a Baroreflex disorder? I have seen others with this issue and it seems to be difficult to find medical experts to deal with this. Travel to a large medical center may be necessary. Can your PCP or oncologist give you a referral? The Mayo system is a good place to look. I hope that others like @56tburd can chime in and share their information.

@cgoins1031 Hi Christian. My experience was in 2006. Little information was available back then on what we would have to deal with for aftereffects of radiation. With syncope, a possible culprit is baroreflex failure, something I've been dealing with for years. A large percentage of people who've had radiation of the neck are likely to experience this. I've posted issue elsewhere, but a quick run-down is this. Radiation hardens the blood vessels, making it difficult for your baroreceptors to detect blood pressure variations leading to wild swings of BP readings. There is no cure, so it's a matter of treating the symptoms of hypertension/hypotension to improve quality of life. I've posted the protocol I've been using under baroreflex failure. It isn't perfect, but at least I feel like I have some control. I wish you well.

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

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.

I am so sorry you have been through so much. I have avoided radiation and chemo, but an mri in august will tell.
Problem is mine shoulder hurts like hell, everything I do there is active severe pain. I start therapy tomorrow, but it hurts too much.
When I can get it healed, a massager would be heaven. Thank you for your response.

@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.