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DBS or Apomorphine

#1

I live in Spain where the treatment I have had regarding PD has been amazing.

Because my drug medication (on Stalevo & Sinemet Plus Retard) has maxed out and is starting to have little or no effect, my Neurologist has suggested either DBS or Apomorphine using an epi - pen.

I am not to keen on the DBS (don’t want someone ‘messing’ about with my brain) and I also have a thing about sticking needles into me!

I have a little time to think about the DBS since I am 68 and the cut off age for the treatment is about 70.

I would be interested in the experiences good or bad from people who have had either treatment.

#2

At the moment, Casakasa, I am using stalevo and the ap-go pen. Stalevo seems to have little effect these days but I do get extra ‘on’ time by using the pen. The problem for me is that I can’t inject myself. By the time I’ve decided I need to use the pen, I am too jittery and have to call my husband to do it. It really does not hurt but I have found a few side effects, the extra ‘on’ time is worth it
Side effects include excessive yawning, feeling a bit woozy and a bit of dyskinesia.
I don’t want dbs!
I am 64 and I have had pd for twenty three years.
All the best.

Lin

#3

If you did decide to have dbs southmead hospital do the whole operation while your asleep, I have had pd for 11yrs and had dbs for 6yrs it’s got to be the best decision I made all so the battery are rechargeable now Medtronic 15yr and Boston scientific 25yrs .I still had to keep fighting pd like got fit gave up smoking, drinking also it takes a little while to get the settings right, no more tremors,walking improved

#4

Thanks for the input folks.

I live in Spain and come under the Spanish NHS, and no longer qualify for any nhs treatment.
It would take a while out here as far as the DBS is concerned. I go on 3 Sept to my neurologist for tests re the Epi pen. My wife is an ex Paramedic, so she will have no problem assisting.

I have had PD for about 5 years, but my symptoms do not manifest themselves as much as some other people. I have the occasional tremor, and sore and stiff legs but my main problem is memory and inability to comprehend what is being said to me.

#5

Hi

My dad has had both. He had DBS about 7 years ago and stayed on his pump but recently transferred to the pen in the last year which is so much easier.

DBS was scary but he’s had parkinsons for 17 years and is now 72. It has made a massive difference because when the battery stopped he went rigid and you can tell the difference when he has the settings tweaked. I’m not going to advise you on what to do but just wanted to let you know some other experiences.

Kathryn

#6

Thank you for the info. I see my neurologist in September, so I will let him know what I want to do. I think it will be the pen.

He has said that 70 years of age or thereabouts is the cut off point here in Spain, so I only have a couple of years to go.

I don’t like the idea of my brain being messed about with!
Regards,
Stewart

#7

Hi I had the DBS op done at St. George’s hospital Tooting in November 2017. Like anyone I was always scared to death (to put it mildly lol) of having someone with a black & decker drilling into my skull! But after freezing up (switching off) while being out & not being able to make appointments, meeting up with friends & losing all my confidence I suddenly thought to myself is this how I want to be? To me it was a no brainer. I discussed this with my family & they supported my decision, I asked all the questions about the op & there are risks as with any op but in fairness they are surprisingly low! You have to be assessed for suitability for the op first & I was accepted thankfully. The worst part of the op was the fitting of the frame for positioning of the wires & drilling points which was painfull until the local anaesthetic kicked in. The drilling was weird as I was awake & the frame I had on was fixed to the operating table but not painfull at all. I was put under general anaesthetic for the fitting of the battery/control pack (it’s similar to a pacemaker & mine has to be replaced every 4-5 years) I was in hospital in all for 3 nights. I now have my confidence back & don’t freeze up anymore so have got my life back & have my meds reduced by half! It’s not a cure but it gives you an extension of time to do the things you need or want to do. Hope this helps?