Hello,

I have RIBP. 8 years 4 months ago it started, 1 year after my radiation ended.

I see your inquiring about the future, possible expectations. I'll start with what my neurologist said ... "The condition will continue to progress until it peaks (stops). Your right arm will catch up to your left arm in time" I've come to learn everyone is differently in the order of symptoms as well as speed of progression. You are aware there is no cure , it's life changing.

I'll quickly explain my symptoms order and you can use for reference with others information you find.

2018 felt jolts of lightning in my forearms *reference could curl 35lbs both arms with ease
2019 Feb both hands numb, left worse that right (lwtr)
2019 March pain unbearable, level 8-10 all day (except sleeping)
2019 April put on Gabapentin for nerve pain
2019 Numbness and pain moving up my left arm
2020 Jan saw a real neurologist, Pain so bad my speech is slurred, moved to Pregabalin for nerve pain
2020 Pain moving slowly up my right arm

All this time exercising hard to prevent muscle atrophy and not winning. The pain is unbearable. My left hand (dominate hand) is unusable except to grab but must be looking at my hand. Left hand has no sensation, right hand losing sensation.
Pain and numbness moved into my left side neck, head, and ear.

2022 Nov Constant ringing in right ear even to today. Higher the pain ringing is more in tense.
2023 May-Jul Every 3-7 days would be have chills, feverish and sweat at night, hard time eating food, gagging up my food every meal, weight went from 170-150lbs, Pain was so bad, Lost cognitive function living hour to hour couldn't think or remember anything
2023 Aug diagnosed with aspiration pneumonia, gave me antibiotics. I stopped exercising
2023 Aug - 2024 Mar Still cant eat right, gagging up my food is so painful, 2023 Nov blacked out twice, 2024 Feb blacked out again, Every day is level 8-10 pain
2024 Mar ENT recommended I move to g-tube feeding. This saved me as it reduced the pain spikes when eating/swallowing.
2024 Mar diagnosed with Dysphagia

2024 till Now Right arm is catching up with my left side. Right hand dexterity has gotten worse these past 4 months. Nerve pain and numbness is halfway across my face and around the back of my head to my right ear over the past half year.
Left hand can barely curl 3 lbs. once, Right hand 8 lbs. Both arms/hands vibrate making it hard to feed and expect to last maybe 1-2 years before having to move to a bag. My memory access is bad, psychologist says due to chronic pain. The constant pain/vibration in my head upsets me. Not being able to use a computer mouse is upsetting. No understands my talking so slurred 🙁
My world has shrunken. Nerve fatigue, hard to do anything. What I do now is put all my energy into my job and save as much money as I can for my family.

I've been told usually at the 15 year mark, your lower jaw on the side with the highest radiation dose you start losing teeth, great.

As you can see there is some progression involved with RIBP and everyone has different underlying symptoms and not everyone would be as bad as mine and there are others who are worse off.

You didn't mention any pain. This seems a huge positive.

I've seen 5 neurologists, 4 pain doctors. Nothing.