Physio has referred me for botox injections in my arm next month. Will it give me movement back or just make it looser?

#1davew1966(Joined Oct 2025 · 21 posts)June 9, 2026, 9:18 pm

Ten months post stroke, right side. Leg is coming along, arm is not. The elbow has been bending up tighter over the last three months and the hand is a fist most of the day now, my wife has to prise it open to wash it and the nails are a battle.

Physio has referred me to the spasticity clinic and says I'll probably get botox in the arm, appointment is mid July. She was careful with her words and I think she was trying to manage me, but what I HEARD was "we're going to loosen the arm off" and what I WANT to hear is "the arm will start working".

So which is it. Does the botox give you movement back, or does it just make the arm flop about? Because if it's the second one I'm not sure I see the point, a loose arm that doesn't work is still an arm that doesn't work. And does it hurt, and how long does it last, and do I have to keep having it forever? Sorry, lot of questions, been sat on this for a week.

#2keithb57(Joined Oct 2024 · 51 posts)June 10, 2026, 8:41 am

Had it four times now. It won't give you the arm back, Dave, I'll say that plainly so you're not waiting for it. What it did for me was stop the hand being a fist, which meant my wife stopped having to fight it every morning and the skin on my palm stopped breaking. That sounds small until you've lived with the other version.

Doesn't hurt much. Handful of little injections, stings for a second each. Mine started easing off after about a week and was noticeably tighter again by three months, so I go back roughly every three to four months.

#3Dr Paul HutchinsClinical moderator(Joined Nov 2024 · 64 posts)June 11, 2026, 10:07 am

Dave, the direct answer is that botulinum toxin reliably reduces the tone in the muscles it is injected into, and it does not reliably give back voluntary movement. Those are two different things and it is worth holding them apart, because most of the disappointment I see with this treatment comes from people who were told, or heard, the second when the clinic meant the first.

What it actually does: the injection blocks the signal at the junction between nerve and muscle in the specific overactive muscles the clinician chooses, often with ultrasound or a stimulator to place it accurately. The muscle quietens. It starts working over a few days, peaks at around 2 to 4 weeks, and wears off over about 3 to 4 months as the nerve endings recover, which is why it is repeated rather than done once. Keith's timeline is typical. The large UK trial of it for the arm after stroke found exactly the split you are asking about: tone improved, some specific arm tasks improved, overall arm function in daily life did not. Reducing tightness and regaining control are separate problems, and this treatment addresses the first.

That does not make it pointless, and I would push back on "a loose arm that doesn't work is still an arm that doesn't work". A hand that can be opened, cleaned and rested is a different hand to live with than a clenched one, for you and for your wife, and a permanently tight elbow and fist left alone tends to stiffen further and hurt. The other thing the injection does is buy a window. While the tone is down, stretching, splinting and practice become possible that were not possible before, and in some people with a little movement underneath the tightness, that window is where a bit more control gets found. It is always meant to be paired with therapy in those weeks, never used on its own, and the site sets out what it does and does not do in spasticity and botulinum toxin after stroke.

On "forever": it is repeated for as long as it is helping and reviewed each time, and some people need fewer rounds as things settle. Which muscles, how much, and whether you are a good candidate at all is a question for the clinic who will examine your arm, and it is exactly the right question to take to them in July.

#4mattw_tbi(Joined Jun 2025 · 17 posts)June 11, 2026, 7:52 pm

One practical thing from the TBI side, where it's the same drug for the same reason. Ask the clinic straight out what the plan is for the weeks AFTER the injection. Mine was a night splint and a stretching routine and a block of OT, and the round where I actually had all three lined up did far more than the round where I just had the jab and went home. The window Paul describes is real but nobody fills it for you.

#5davew1966(Joined Oct 2025 · 21 posts)June 14, 2026, 8:33 pm

Dr Paul Hutchins said:

Reducing tightness and regaining control are separate problems, and this treatment addresses the first.

Right. That's the sentence I needed and didn't want.

Reading it back I think I'd built the July appointment up into the day the arm comes back, because it's the first new thing anyone's offered in months and I'd hung everything on it. Adjusting. Fist that opens, wife not fighting it, nails that get cut without a row: fine, I'll take that, it's more than I've got.

Going to ask about the splint and the therapy block like Matt said. Will report back after.

#6davew1966(Joined Oct 2025 · 21 posts)July 30, 2026, 6:26 pm

Two weeks post injection. Six little jabs, forearm and biceps, stung and that was it. Nothing for four days and I thought it hadn't taken, then on day five my wife opened my hand at the sink and it just... opened. She actually said "oh" out loud.

No new movement, as promised. But the elbow sits straighter, the hand rests flat on my leg, I've got a night splint on for the first time and I'm in for a block of OT next week to use the window. The clinic said back in October to see about round two. Not the miracle I'd invented, but the mornings are different, and I'm leaving that here for the next person who's sat on their questions for a week.