I had cancer at base of tongue (hpv) a little over 2 years ago and was treated with Cisplatin once a week for 7 weeks and 35 radiation treatments... No surgery other than the initial biopsy.

I have now developed what the neurologist is calling cervical dystonia where my left sternoclatomastoid muscle is constantly twitching and hard spasming which locks my head in a straight forward position. I am also having a form of neuropathy where my tops of feet will go numb and I have cubital tunnel in my hands (mostly left side where I think I was radiated heavier). I have the ants crawling under my skin thing in both legs up to just above my knees and occasional burning in calves. Also, feels like my finger tips have no meat on them like I cut my nails too short or something, bothers me typing or touching my iPad. I've also had some tremor in my left arm and random stabbing pains all over my body. Then. there's these deep muscle pains in my legs that come and go.

Ive been dealing with extreme anxiety and depression and having so many symptoms that I can't tell what's real and what's not anymore or what's from the radiation, chemo or maybe cervical dystonia was separate from the cancer treatments. Ive looked at all Dr. Stubblefields papers and seen his Youtube videos and sets like most of this is brought on by the radiation but I want sure if you had to have direction or just radiation treatments.

Feels like my entire nervous system is going haywire.

Anyone have any idea what I can do to improve? My doctors are of no help, they look at me like i'm speaking another language when I mention radiation fibrosis.Ive had tons of blood work and found mostly normal other than very low lymphocytes. Ive been to 4 neurologists including 2 movement disorder specialists, tried baclofen and flexeryl, been to 3 physical therapists, had 3 MRIs and saw 2 neurosurgeons (MRIs show trouble at c3, c4, c6, c7). Had a small dose of Botox last week (12-20-2020) and waiting for that to kick in.

Hi Chris, I was hoping someone with an answer would have responded by now. Unfortunately that has not happened. Oral cancer has all these side effects and very often they depend on the individual. My husband had his esophagus totally closed by scarring so that he couldn’t even swallow a sip of water. Doctors would tell us that it was REALLY rare but no one could tell us what remedy there was. So I understand your frustration.

You mentioned depression and anxiety, and my question is if you have sought out a therapist. I am not at all saying it is in your mind, NOT AT ALL. It’s just that sometimes a therapist may be able to teach you relaxation methods and other strategies that may help you cope a bit better.

I am truly sorry about what you are suffering, indeed I do. I so wish I could have some kind of answer for you.

I have tried some therapy but hasn't really helped, Ive tried lots of mindfulness exercises and breathing butI'm still a mess. Having this looming over me, not working, feeling helpless and hopeless are tough issues to work out in therapy, what I need to do is make progress and get a grasp on what's happening to my body. Thanks for the response and Im sorry to hear that about your husband. I'm guessing he's on a feeding tube, Ive had the esophagus dilated twice in the last year and truisms setting in so I may get to that point too.

My husband was prescribed anti-anxiety medication. He took it until he felt he didn’t need it and he stopped. Recovery is as hard as undergoing treatment, that I believe. You might want to explore that with your doctor.

Unfortunately, John passed from pneumonia brought on by silent aspiration. It’s a very long story. He actually found an interventional radiologist who opened his esophagus using earth magnets. It was a trial procedure and to my knowledge, so few doctors know about it that John remains the only patient on whom this was done. I know because the doctor called me about a year back to ask me for permission to publish a paper about the procedure.

With the new year, I would like to wish you better luck, health and smoother sailing.