Botox injections

[Thomaslondon]

Good morning

My husband saw the team under Prof Giunti at UCL the other day and they have suggested two different procedures for pain relief.

The first is to have botox injections directly into the thigh muscles and the second is to have a cannula inserted into the spinal cord to administer a muscle relaxant.

Has any one been down either route?

We are also being referred to the spasticity clinic for a wheelchair fitting.

Any recommendations or advice on what to expect?

Many thanks for your words of wisdom.

Thomas' SW London based

[wobblybee]

🙂 I know someone who has Botox injections for Dystonia, she finds them helpful.

[Thomaslondon in reply to wobblybee]

Thanks Wobblybee

It's hard to know what to do. The neurologist is just trying to make my husband as comfortable as possible as he is in constant pain from the spasticity. He tries moving around but is falling a-lot so we have to work out the less of all evils. The Botox will make him wheelchair bound as it will relax the muscles and he relies on the stiffness to balance and keep him upright.

Have a happy Christmas everyone and I hope 2020 brings you much joy.

[wobblybee in reply to Thomaslondon]

🤔 Pain relief is so important, I’ve only tried Botox for an eye condition, but I would give it a go for pain relief if it was an option. Hopefully someone else will see this and be able to give more advice. With ataxia, it seems to be a constant ‘trade off’ with medications. I don’t yet use a wheelchair myself, but there are other users on here.

Very best wishes for a Merry Christmas and a Happy New Year 🎄🍗🎁