Am I expecting too much from my first Botox?

[phil999]

This is my first post here. I was first diagnosed with cervical dystonia about 8 years ago. Over the years, my symptoms have got worse. My neck now constantly twists to the right, and when I look to the left or straight ahead, I have a pronounced no-no tremor.

Eight weeks ago I had my first Botox injections (150 units of Dysport in the right splenius capitis, 50 in the left splenius capitis and 100 in the right sternomastoid). The pain, for which I'd been having fortnightly physio for the last 8 months, has eased but there's been no change in the muscle spasms in the neck and the accompanying tremors. I've a followup appointment with the same doctor next month.

Has anyone else been underwhelmed by their first Botulinum injections? Was I expecting too much? Was the dosage too low or am I perhaps immune to Botox (I gather it doesn't work for everyone)? Any comments gratefully received!

[Rkai]

Hi

Yes I had botox on an increasing dosage over two years and I have never experienced any benefit. As you put it, correct dosage and position of the injections seem the critical points. Eventually I did ask for a second opinion and had separate injections to identify the dystonic muscles, but still the botox didn't work. Yes there does appear to be general acceptance that dysport does not work on everyone. Sorry to convey negative information but for me it was the reality. That said it does work for the majority.

I was interested in your comment about regular physio. Was that done privately?

good luck anyway....

Rkai

[phil999 in reply to Rkai]

Thanks for your reply, Rkai, and your good wishes. I'm sorry Botox didn't work for you.

You asked about physio. Yes, mine was done privately. When the pain and stiffness started a year ago (I was thankfully pain-free for seven years, unlike so many people with CD.) I had very little movement in my neck and needed treatment quickly. I assumed - maybe wrongly - I'd have to wait if I wanted treatment on the NHS. Have you been able to access physio on the NHS? (I presume you also live in the UK.)

All the best to you,

Phil

[Rkai in reply to phil999]

Yes in UK...You are rright aabout llong wait....I only had access to a physio through a pain management program but had to wait ages....and then it was just talking not touching...

How did you choose your private physio.....had tthey any experience with CD?

[phil999 in reply to Rkai]

I'd seen the physio some years ago after I hurt my shoulder playing squash. As luck would have it, he has also treated patients in the past for CD so he knows what to do in terms of mobilisation, strengthening the weakened neck muscles, improving posture and giving me exercises to do at home.

I found some useful information on the Dystonia Society website (dystonia.org.uk/physiothera... where they stress the importance of choosing a physio who's specifically trained to work with dystonia (eg neurophysiotherapists).

This site has some useful info too: connectneurophysiotherapy.c...

[Rkai in reply to phil999]

Thank you so much for giving such comprehensive information.....You wwere llucky to ffind a physio with experience of treating CD. Sorry about rrepeat lletters.....something wrong with my phone! I will look up the link you've given me.

[linda96 in reply to phil999]

Hi, sorry to interrupt, hope you don't mind. My sister was diagnosed 17 years ago with parkinsons and recently with PSP. There's 5 main symptoms for PSP, and she has none of them. However, she does have botox injections regularly which is not a treatment for either PSP or Parkinsons. She does however, have Cervical Dystonia symptoms.

She can still walk and has a brace for her head which allows her to walk. Her mind is still fully intact, but her eyes don't work too well.

She is under a hospital, but I don't think they know how to treat her and after 17 years have just done the first MRI.

How can I help her get better treatment? We are in the UK.

Thank you, sorry for interrupting

[Rkai in reply to linda96]

You can always ask for a second opinion.....it’s perfectly ok here to do that. Especially with CD as so few even within the medical profession know about the condition. Look up neurologists who specialise in CD or at least movement disorders and ask your GP to refer you.

It is so dispiriting to have so much confusion and lack of knowledge around our condition.

[sharlynn]

Hi, when I had my first Botox it worked great but after that it didn't work as well but lately I've noticed the tremors have reduced. I think they have to start low then up over time till they get to the right dosage. I hope you have some relief over time as this is an awful thing to live with. Good luck. Xx

[phil999 in reply to sharlynn]

Thanks, sharlynn. Glad to hear your tremors have reduced. In addition to the injections, I was prescribed a very small dose of clonazepam to take when my tremors are particularly bothersome (usually when I have to speak in public!) but haven't tried it yet.