After TORS, de-intensified trial of 3 weeks rad

Thanks Smitty and Marine for your encouragement and insights. I just finished my second week of radiation, and I'm oddly feeling better than I did at the end of my first. This may be because I began taking Zofran for nausea. Perhaps my body has figured out how to respond to the bad stuff, or my expectations are more realistic.

My care team has pushed the salt/baking soda rinse on me since the beginning, so I've been using that, which does help to cut the acidity that comes on sometimes. I'd been swishing with salt water ever since my surgery to aid healing, so that was easy enough.

I do wish that eating was easier, but I shouldn't complain. I get very nauseous as soon as foot hits my lips (or even smell most things), and my taste buds make everything taste rancid or like metal -- but I can still eat some spicy foods, and of course the high-calorie shakes. (I was in the middle of training to race again when I was diagnosed, and had to put on 10 pounds of fat before my surgeon would operate, so I just kept up my 5-6k cal/day regimen but almost no cardio. Got on 14 lbs in 4 weeks!) But I obviously don't have the appetite for so much now. I'm forcing down enough to get around 3k cal/d now, so weight is holding steady.

To update my progress here:

7/17: I felt great after having the weekend off radiation. Never looked forward to Monday like I do now!

Began taking Ondansetron (~Zofran) for nausea. It helps a little, keeping the metallic taste away...maybe. But does seem to help me feel better in general.

7/19: Had a bit of a breakthrough at PT today. My physio is schooled in neuro-muscular connections, and we began using e-stim (electronic muscular stimulation) to activate my upper and lower trap to get proper form while doing my pt exercises. My body felt like it was finally doing the right thing. This practice has shown evidence to aid re-establishing the connections within the accessory nerve, and I already see my trap and sternocleidomastoid coming back stronger.

7/20: Feeling pretty crappy again, just general queeziness and rundown. But still getting to work and PT.

7/22: Feeling better than last Friday. Zofran seems to be helping. Now I have the weekend to repair and bolster up for my final week of nuclear war.

Huge thanks!

J

Smitty — I assume with TORS your accessory nerve wasn’t cut, correct? Mine was not. I was told “about two months” for it to start working again and another couple months for it to be ~100%. I’m sure that’s an estimation for my particular procedure, but I’ve been wondering what others’ recovery timelines have been. Of course, I really want mine back asap… Without the trap and sternocleitomastoid working, any two-hand upper body activity is compromised, and I’m concerned the bad form will cascade to other bad things, injury, etc.

Focusing on physical activity is just about the only thing that prevents me from feeling like crap.

Howdy all. @wdidg I detailed my immediate side effects during the final week of radiation, and the horrible week following. That week after was definitely some of the worst in terms of overall feeling, but I was able to swallow down enough shakes that I wasn't still losing weight. I just had to rest and take it and meditate as much as possible because even walking around outside didn't help me feel better. Now it's about 7 weeks since I concluded radiation, and I've got all my weight back (but definitely not the strength/muscle, but getting there). My taste is slowly coming back, but it's very altered and I have a lot of inflammation & stiffness in my jaw and neck. It seems like that went away a few weeks ago and has come back... but that may be because of exercise.

I should also note that I wake up sore and really stiff every morning. Best thing has been a hot shower and PT first thing to loosen up.

Also, I've tried to be a test case for how quickly one can come back muscularly from the accessory nerve irritation that comes along with the neck dissection. Like I detailed above, lots of PT and NMES exercises have helped, but so far only my sternocleidomastoid and upper trap are "re-activated" much. Mid and lower trap are still flaccid and atrophying -- which I hate. My docs are great, but they really misrepresented how quickly that would come back. All the research I've seen says 6-12 months, though they said maybe 1-2 months. Jeez. The study I linked above suggests that ~6 months with intensive PT is about as good as you can wish. So I'm working for 5. It's been 3 months since my surgery, so I'm gunning for it. Kayaking is really good PT btw.

Hey all. Quickly here — at 6 months postradiation now, i’d say I have about 95% of my taste back. Which is pretty great. My tongue and jaw are still a little stiff in the morning but they warm up fast.

As for shoulder issues… I think that the effects of the spinal accessory nerve shutting down due to the neck dissection are quite extensive, and neglected during discussions with surgeons. My surgeon is one of the best in the country, but he still thought that my trapezius and SCM muscle would be innervated in 2-three months. In fact, that would be impossible, as the innervation proceeds at about 1 mm per week. After a lot of anxiety about my muscles not coming back, I’ve gotten loads of testing and working with neuromuscular specialists, and I found that I’m basically right on schedule… But, to answer your question:

I did have a lot of pain at three, four, five, six months after surgery… and that seems to be due to my scapula not retracting, which causes your shoulder to slump forward or “drop”. This caused pain across the top of my chest, collarbone, and my rear shoulder. Even though I was doing physical therapy, I still needed the advice of a bio-mechanics specialist to teach me to keep my scapulas “packed” down and inward during the day, which was really tough at first, but now has led to a lot less pain and my body working a lot better as I work out daily.

If you’re not going to PT, try, looking up exercises for your subscapula. Those are likely what you should be doing.