It's been a while since I posted on here but I have seen my consultant today and as a result of my recent deterioration she has given me a choice.
I can have an Apopump, duodopa directly into the stomach or DBS. All are invasive to some extent, all have potential risks or side effects but all have the possibility of improving my quality of life.
I would love to hear your opinions or personal experiences of any of these. At the moment I am favouring the pump with the possibilty of DBS in the next year or two. Is this the right way to go?
I am 53 and was diagnosed about 6 years ago
Mr.Toad, you are a lucky man to be offered these choices. The Duodopa pump is very expensive and is not easily given . Of the three I would go for the Duodopa pump. The Apomorphine (a Dopamine Agonist) will give more side effects, possibly hallucinations, it would be my third choice. You will have to be assessed for these procedures anyway and that might take away your choices. I have read about DBS and seen/spoken to people who had it done.It can be very effective. I am sure all three have their pros and cons.
Thanks for your response. The consultant did say she would have to apply to get the duodopa and, as I carry a lot of excess weight, the pump may not be suitable. This would leave the DBS but I hardly relish the prospect of the surgery involved although the consultant did seem most keen on this option.
I wondered why you favoured the duodopa option, is it just the side effect issue?
My husband was on the apo pump for fifteen years firstly just days then 24 hours, it worked very well for him until the last year. Once you have it all set up it is very easy to do, you have a bolus button to press if you need a boost.
If you have a bit of a waist all better as you will have good layers to put the needle in. My husband had a palladotomy operation ( before going onto to the pump) which they don't do now as they do the DBS instead and not everyone is suitable for these brain ops, I would talk to your consultant again as he will be able to reassure you which is the best for you.