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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: 2 days ago | Replies (688)Comment receiving replies
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.
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@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.