Anyone know how long the waiting list is for DBS at the National Hospital for Neurology and Neurosurgery, Queen Square, London?

Hi everyone, hope you are all okay. I had my consultation this week.

I was told that the only option for me was DBS as medication is not working. Next step is to meet with the DBS Team at Queen Square.

I am now left in a situation where I am simply trying to manage this rather precarious situation I find myself in. I am adding in Amantadine to my daily regime of Madopar CR and Madopar dispersible every 5 hours. Any feedback on this?

Has anyone had their DBS done through Queen Square Neurology?

Do you have any idea how I would find out what the wait is to meet the DBS team and then the wait to start the ball rolling to get an idea of the time scale we are talking about here.

I am scared but excited. xx

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  • when you say your meds are not working - in what way arent they working - only i am not getting anywhere with my meds but habe asked my neuro aboy DBS and he said it wi=ould only work of the meds worked - in other words if i had a tremor etc - then they woukd work but only then would i get relief from the op ???

  • I get dyskenisia for the first hour after a dose of levodopa and dystonia on wear off. When Levodopa is working its great but its fluctuating and wearing off without warning. apparently this is what happens with young onset.

  • It's my understanding your meds need to work when your on time. Prior to DBS in June, my meds worked but my on time had reduced to less than an hour. My meds were 82% efficient when they kucked in. They just didn't work very long and my rigidity and dysikensia returned. Hope this has been helpful.

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