[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5338

I hope the Botox starts to work soon.
Sorry to hear you’ve had such a bad week and it’s affecting other parts of your body!
Please let me know how that all pans out.
Take care!

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5337

I realise that dbs isn’t a cure but it’s good to know that it’s worked for you.
I hope your neurologist works his/ her magic for you,

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5335

Hi John,

How did you go after that last bigger dose of Botox?

Cheers
Anna

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5332

Hi Robyn,

So has it stopped all the spasms and heading twisting/ rotation?
Anna

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5330

I’m so glad that the DBS worked for you. So sorry to had to go through such a bad time before you got to that

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5328

How did you manage 5 yrs without Botox? That must’ve been awful!
Is DBS worth having? Do they shave your hair off?

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5326

I’m going to ask about EMG when I see him on 7th May.
I’ve been given a recommendation about another neuro at the same clinic who does use EMG so may ask to see her if so get no joy with the current one.
Such a shame you went through the anti body build up! I’m glad it’s not as common now!

Anna

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5323

Hi John,

I’m going to ask about EMG when I go next. I’ve got a feeling he doesn’t do it which won’t be good.
I take it your neuro uses EMG for you?
I called the SAN today and the receptionist there was a breathe of fresh air compared to the ones at the place so go!!
She said that Dr Peter Puhl was booked out till July but she could get me into see one of the other neuros in the 2nd week of May.
I’ll give my current one another go and if I’m still not happy I’ll give the SAN a go. It’s an hour drive from here but my husband is happy to make the trip – I’ll drive myself once my head faces forwards haha!
Anna

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5322

Hi Robyn,

They’ve only charged me the neurologist’s fee so far. They said I’d get an invoice for the actual Botox but so far nothing. TBH I’m happy to pay privately to be pain free and not be embarrassed by my tilted and twisted head.
So sorry to hear you built up antibodies!
I definitely don’t want that to happen so hopefully will only need it 3 monthly soon
Anna

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5319

Hi Robyn,

I agree that botox should last 3 months but when it’s the first round the neurologist doesn’t know how much will do the job and which muscles to inject – at least that’s what he told me. He said it’s a case of trial and error and tweaking the dose till he gets it right. It would be horrendous to wait 3 months for the next dose when the very first one did nothing as in my case.
Once they get the right dose every 3 months is fine.
I finally got my neurologist to give me another appointment for a week on Friday! Had to get my husband to lay it on with the receptionist!

Cheers
Anna

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5316

Hi John,

That’s so good to hear that you’ve been given Botox that often.
I called the neuro last Thursday and got told to send an email which I did straight away.
I called yesterday and got told by the receptionist that the government won’t allow me to have it more often than 3 monthly. I had to bite my tongue or I would’ve bitten her head off!!
She said “he’ll call you!” which of course he hasn’t!

I’m phoning again in a minute but may give the guy at the SAN a go- thanks so much for that!

Is the Botox working for you at all? Where do you have it done?

Cheers
Anna

[Anna]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5314

Hi Wayne and everyone,

I’ve just joined this group and noticed you’re on the Central Coast like me Wayne.

My story is that I’m 55, married with 2 adult kids.
Around November last year I developed stiffness in my neck followed by my head rotating to the left.
After seeing a chiropractor,physio and having acupuncture I was eventually referred to a neurosurgeon. An MRI showed spinal canal stenosis. The surgeon couldn’t explain the head rotation but said if I didn’t have surgery and had a car accident and whiplash I could end up as a quadriplegic or 6 foot under. She said she hoped the surgery would resolve the head rotation too.
I had a cervical laminectomy and fusion of C4-7 in February and of course my problems didn’t go away.
I saw a neurologist last month and got told I have cervical dystonia.

He has given me 2 small amounts of Botox over the last month which have done nothing.
My question is that although you’re not supposed to have Botox more often than every 3 months, has anyone else been given top ups in the first dosing round till they get to the right dose to do the job?
I read somewhere that it’s more about the total amount of Botox rather than the frequency.

Wayne, I was wondering who you see on the Central Coast and if they’re any good?
I’ve been trying to speak to my Neurologist since last Thursday since I’m in a real mess and I can’t get passed the receptionists!

If you want to email me directly rather than in this public space please let me know and I’ll give you my email address.

Thanks
Anna

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