botox injections

Hi Kevin,

Botulinum toxin (commonly called botox) is one treatment available to help improve the function of the arm after stroke in those with moderate to severe spasticity. Botulinum toxin is a neurotoxin that blocks nerve signals that tell your muscles to contract. The effect is that it temporarily weakens or paralyses the muscles for a few months. It is usually an option offered when standard treatment hasn't been successful in stroke survivors with moderate to severe spasticity of the upper and sometimes lower limbs. The injections usually start to reduce muscle stiffness or spasticity within two to four weeks.

How many injections are required and over what time frame is dependent on how your wife will respond to this treatment and the specialist and rehabilitation team will be able to guide you on this. You may like to read more about this treatment on page 99 of our National Clinical Guidelines. It is recommended that botulinum toxin is used in conjunction with clear goal setting (what does your wife want to achieve with her arm function) and rehabilitation (tailored occupational therapy and physiotherapy exercises).

Your wife's specialist should be able to give you the relevant information about the procedure, what muscles they will be injecting, how much botulinum toxin is required, potential side effects or complications and the plan for rehabilitation. If they haven't provided this, I would call the specialist's rooms and request more information. You can also write a list of questions to ask at your wife's next appointment.

You may also find our fact sheet on upper limb management helpful. 

There are some members of enableme who have regular botulinum toxin to manage their arm function and I will see if they are able to give you a personal experience.

If you wish to discuss this over the telephone, please don't hesitate to call StrokeLine on 1800 787 653.

Best wishes,

Simone (Occupational Therapist for StrokeLine)

thank you very much for your reply and the information was helpful , thanks kevin

Hello Kevin

I had a stroke early 2013 and my left side was affected. I don't have a lot of feeling or control in my forearm and cannot use my hand at all.

I've had botox 3 times, this last one (3 weeks ago) as part of the clinical trial called InTENSE Clinical Trial. Unfortunately I'm in the control group so only have minimal exercises i can do but agree with Simone that botox should be used alongside a very rigorous and constant therapy, exercise regime and goal setting. It certainly does loosen the muscles where those injections are placed though. 

After this trial I will be receiving the therapy they are giving to patients who are in the trial who receive the intense therapy and I know that it will help a lot in regards to my hand even if it's for slight control of being able to loosen and lightly grip something as there is absolutely nothing I can do at the moment.

Thank you for your comment Saran - Diana

Hi Kevin,

I've been having Botox/Dysport injections for about 6 years and look FABULOUS. But that has nothing to do with the injections. I was told about it being listed on the PBS for upper limb spasticity, which affects me post-stroke and thought I'd have a crack. Simone answered really well so I'll fill in the gaps based on personal experience.

I have too much tone, they are always on,  in muscles in my right hand (this is for you Simone, FDP, FDS, Lumbricals, Opponens, Brevis) that make it hard to release and makes activities like holding hands, doing up shoelaces, picking things up difficult. As Simone said, botox/dysport "turns off" those muscles so I can try to work on releasing my hand.

The injections themselves aren't that bad, depending on you pain tolerance. I am very used to needles now so it doesn't worry me. Sometimes they have to fiddle around to get the right spot to inject. One time I was a pin cushion and they went in and out of me 27 times. Usually the needle is connected to an electrical stimulator so they can see if they are in the right spot, i.e. the muscle will be moving which for me means my fingers will move under electrical stimulation. This feels weird and sometimes hurts and I grit my teeth and say TURN IT DOWN. 

Efficacy. Botox isn't a magic bullet and doesn't fix the problem, let's be clear on that. Unfortunately it's 100% reversible, it wears off. I have had injections last as little as 8 1/2 weeks and as long as 16. Sometimes my hand has been turned into a jellyfish, i.e. it was too effective and becomes useless until the injections wear off a bit. As the neurologist say who injects me, unfortunately it is an inexact science which is why sometimes the results are really good and sometimes not.

What I will say about botox is, like Dannii Minogue, I'm a bit addicted to it and for exactly the same reason. Unlike Dannii Minogue I don't need botox to look fabuluous though. Botox works between the ears as well. When I'm all nice and loose and life is easy because I'm full of botox my mood is enhanced as well. When the botox wears off and life becomes that little bit more difficult I miss it and wish things weren't difficult. You think I'm joking about Dannii so I added the article below.

Hope this helps. Feel free to ask me any questions and I wish you and your wife all the best.

Cheers, Adrian.

http://www.mirror.co.uk/3am/celebrity-news/x-factor-judge-dannii-minogue-420303

The other thing to be aware of when going into botox therapy is that each movement you do needs 2 groups of muscles. so learming to move your fingers means learning to turn on one muscle or group while turning off the other, which is why physical therapy with botox is best.  The botox does the turning off for you so you can access the opposing muscles and hopefully learn to use them enough that you can overcome the tone for yourself as the botox wears off and the muscles start to wake up again.  Tone should abate as you get more active use of the muscles ( it's a safety reflex, the muscles turn on when receiving limited signal/direction from the brain, to prevent muscle damage from hyper extension.)

As mentioned already by others.  It also helps with muscles that are not directly injected.  I find I get much better walking and trunk movement when my arm is botoxed (as turning off the tone allows the surrounding muscles to relax too)  So I too love botox time, even though it never lasts long enough.

-Heather

Thanks Saran, Adrian and Heather for contributing to the discussion and offering your lived experience. Very much appreciated :-)

Simone - StrokeLine