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Cervical Dystonia Has Worsen

Ookpik

l was diagnosed with CD 5 years ago{Even though l had this symptom for over 50 years now], And at that time l wasn't as bad as l am now. My doctor told me, the only option left now is DBS {Deep Brain Disorder] which put the fear into me. l read up on the DBS and found the success rate is 60%, But there are also other issues that can occur. lt said something on the lines of, Bleeding to the brain can happen, that what causes strokes. And the thought of people operating on my brain for 7 hours does put fear into me.
l have been having a lot of spasms lately, and they did get a whole lot worse.. l find it hard to get out of the armchair without having these spasms, and am prone to losing my balance. The painting l did, and the wood carving as well, l find so hard now. Something l enjoyed so much is like it has been stolen from me because l just cannot do it like l used to. l tried, but cut myself, leaving a deep wound. so l just had to stop.
The DBS waiting list is 2 years. That is what l am told, but all the covid incidences that led to huge waiting lists does make me wonder if l ever will have a moment to enjoy life.l am going on 68 and it would be great to feel what life is like to enjoy.
Apologies for the bad grammar. Senior moments kicks now and again.

l just wondered if anyone had DBS or waiting for the operation. And how do you cope with your CD on a daily basis? [like going to the shops, doing chores etc]

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Comments

Alex_Alumni

Thanks for reaching out @Ookpik I'm sorry to hear that. I can completely understand why you'd be feeling scared about the prospect of Deep Brain Stimulation and the complications that could (but definitely aren't certain to) arise. Anything new or different is sometimes unnerving at first. It will always be your choice to make.

Even though I'm sure you know already that the surgeons are trained professionals, and that DBS surgery is routinely commissioned for patients with dystonia, it's alright to be feeling anxious. Have you spoken with your doctor about the concerns you're having? Just for clarity, it's described on the NHS website as:

Surgery for dystonia

Deep brain stimulation is the main type of surgery for dystonia. It may be offered on the NHS if other treatments do not help.

It involves inserting a small device, similar to a pacemaker, under the skin of your chest or tummy.

The device sends electrical signals along wires placed in the part of the brain that controls movement.

Do you also get support for your condition through Occupational therapy or physiotherapy? Does anyone you work with know about how your spasms have worsened?

I'm sorry to hear about your painting/artwork too. I wonder if there's any adaptions that would make it easier, or less painful for you? I do know of a very talented artist who paints with his mouth. I'll see if I can find anything that might be useful.

In the meantime I'll mark this post as unanswered and hopefully someone with a similar experience can share their thoughts with you.

Alex

Ookpik

l have spoken to my doctor about this. The doctor mentioned many things leading up to the DBS operation and what it entails etc.
l will be going through a 2-year referrals treatment, on talking to the Neurorologists, Pycyatrist, the MRI, scan, a video treatment with a specialist nurse and some other things, which l forgot what they were.
l have no support for Occupational therapy or physiotherapy? The only one who knows about my spasms that have got worse is my wife, she sees it every day.
l do have some implements that do help me. One is called the |Mahl stick. which many painters use to steady their hands when painting. l also have to get into a certain position to stop the spasms, and if it does happen, that is when l have to stop. l also have neck braces and a hand support glove. Which do help to a certain degree. According to the doctor. My disorder is quite severe,and that was in writing.

Due to my disorder and the ongoing referrals, I'll be having. l will not be active anymore on the forum. But l just want to say, Thanks for all your good advice and a forum rich in empathy

Alex_Alumni

Thanks for explaining @Ookpik it's a shame to hear you have no physio or OT support. Can you talk to your doctor about this?

I'm sorry to hear you'll be away from the forum, hopefully in future you can be a regular poster again. You know that the forum will be here for you whenever you need it, so don't hesitate to reach out.

I'm sure we'd all like to hear how you're getting on every now and then, so do keep us updated when you feel able to

Alex

Patze

Hi there! Is this board still up and running?

Albus_Alumni

Heya @Patze, welcome to the community.

If you have any questions or need some help with something, please feel free to write a new post so everyone can see it and hopefully offer top advice and support.