Deep Brain Stimulation Patient Views

I know a couple of people who have had the DBS implanted. The individual with CP seemed to have gotten some good results. Others have had to have it removed due to infection. The individual with Parkinson’s ended up having a stroke because they forgot to give him an anti seizure medication before the procedure so for him, they didn’t get the results they hoped for. It was very sad and difficult for him and his family.

My child just finished a 3 week inpatient rehab stay about 2 weeks of being on neuro unit after her DBS implant procedure. It really increased her confidence and she regained some lost skills!

my daughter had a DBS implanted for dystonia which then led to brain swelling and a regress of skills

After my daughter had it the brain swelling caused a regress in skills. She just had the device turned on and for dystonia it can take two weeks to notice affects. So far we don’t notice anything but I’ll keep you updated!

We had the same problem with Carbidopa. Worked at first but then stopped even with increasing the dose. My child also takes clonazapam. We still see tremors and dystonia though but she has a severe case. We ended up getting surgery for a deep brain stimulator. While some people have great effects we haven’t noticed anything, but we are still fine tuning the settings

For dystonia, the first surgery is the brain portion where they put leads in its. A 4hr surgery. 1-2 weeks later they insert the generator. A month later they turn it on low settings and adjust at follow ups every month. My child had pneumocephalus from this procedure which caused a regress but we are still hoping it helps dystonia which has to be so uncomfortable.

We also don’t have much result with Botox. DBS is a deep brain stimulator where they implant leads in the brain that connect to a generator that sends electric signals in the brain. It’s supposed to relieve dystonia symptoms but unfortunately all it has done so far was give my child a brain injury

Dystonic CP can manifest differently I think for every person, for my daughter she has a lot of fixed dystonia and has dystonic movements in her legs trunk and her head is hypotonic. She recently had Deep brain stimulation for the dystonia and had bad reaction and is having to relearn previous skills. But hoping it helps in the long run!

Honestly, I would have been happy they were conservative and didn't expose me to unnecessary risk. With my type of CP (dystonic), I was offered deep brain stimulation several times (as an adult) and always declined, given that it's brain surgery. On a more recent neurologist visit, I was told that deep brain stimulation actually isn't super useful for dystonia that doesn't arise spontaneously!

If your speech impediment was significantly impacting your life, then yes, you should have gotten speech therapy (probably through your school if you're in the US). If it's minor, therapy may not have been worth it.

We tried DBS because we had exhausted all other measures. It gave a very slight improvement, but now my daughter is being referred to hare exta leads placed to get more relief. At this point my daughter is getting tendon lengthening every 2 months to give her relief