Duadopa

[leojohn]

I am still puzzled why there is such little reference to the Duadopa pump. Can anyone suggest why?

It seems like an effective method of delivering medication for PD; yet I read little about it in the posts.

Can I please hear from someone who has used this treatment; or anyone who knows someone who used it; or someone who feels positive or negative about having the procedure done.

I know it involves surgery and the risks. I know it is reversible.

I am simply why so little is written about it on this site.

I know the monthly medication is expensive; is that why its use is not extensive.

Thank you

[Hikoi]

It is not talked about much is it which suggests it isnt much used by the countries represented on here.

Although it has been used for a number of years in some countries in Europe it has only been approved in US since last year and funded in the UK for a similar length of time and it seems the people here havent heard much about it.

DBS is done within neurology /neuro surgery but who would do the duodopa operation, i guess a general surgeon.

There are videos mostly from scandanavia.

This is one. It is graphic

youtu.be/M4s7PniDy0w(Not working as expected?)

[leojohn in reply to Hikoi]

Thank you Hikoi

You're right.

It is new and like a lot of things in medicine it moves slowly especially when there are still things that can go wrong.

Thank you for your reply.

[soup]

In our part of the UK we have funds for a limited number of pumps a year. Last year there was a tussle between two departments in the hospital as to which should place the tubes so the neurologists couldn't even begin to treat with duodopa.

[Hikoi in reply to soup]

Interesting Soup. I wondered about who would do the op and how they would relate to neurology, espec in the US. Seems it is unclear in the UK too.

[soup in reply to Hikoi]

The gastro surgeons said the interventional radiologists should do it and of course, the radiologists said the surgeons should do it.

It is still only used in complex Parkinson's down here and the travelling to the 'local' movement disorder specialists in Bristol puts people off.

[leojohn in reply to soup]

Thanks Soup

Cost is a big factor. $C 6000 a month is pricey.

My husband has an assessment on Dec.7,2016 with a gastroenterologist who will do the procedure if my

Husband meets the criteria..The adjustment with the dosage is of course done by his neurologist .

Thank you for your reply to me.

[Gwennie1]

My Husband is waiting for an appointment with a view of starting duo dopa .

[leojohn in reply to Gwennie1]

Hope it results in the best outcome for your husband and you.

Our appointment is on Dec.7,2016 for an assessment.

We also hope for the best...it will be a learning experience with new direction for us as caregivers.

[imshakydad]

hi there. I've been on the pump in Canada for several years. Ive documented some of my experiences in my blog - here's a few examples:

imshakydad.wordpress.com/20...

imshakydad.wordpress.com/20...

hope that helps.

[leojohn in reply to imshakydad]

I feel very grateful to you that you take the time to do so much for all of us who sometimes grope in the dark with all the dimensions of PD. I feel your blogs is far reaching. It gave me something tangible that I can share with family (beyond the medical information that is out there.) I had read a lot of that but I needed to hear something personal which I did from you and alcv. Thanks to all who responded.

[imshakydad in reply to leojohn]

ur most welcome! good luck!

[alcv]

I tried it . (I live in the USA ). My experience was not good from the very beginning. First of all the medication is wildly expensive. But I found an organization to pay for mine. But I knew that wouldn't last forever. I had the JPEG tube inserted ( a very simple procedure done a lot )

Well I ended up in the OR less than 24 hrs getting my collapsed stomach stitched back in place. Then I stayed in the hospital for a week.

One of my neurologist programmed the pump. She followed an equation according to how much Sinemet. It was way too much. They thought the trauma my body went through was causing the Duopa not to work properly.

I stopped it for awhile. The daily routine I didn't like. The medication has to be kept in the refrigerator. The first dose has to sit out of fridge for 20 min before hooking it up. Also I didn't know where to put the pump.. Eventually I started back up. The plan was to give me a small dose so I could decrease the 13 Sinemet I take but I was still taking them all and the pump is able to give an extra dose which I was doing. They tried different dosing but the cons far outweighed the pros. The only pro was I could turn it off if I wanted to. My other neurologist was involved with the research of Duopa and he said it is very difficult to get the right dosage.

I finally got the tube removed and I feel much better. I didn't even get to tell about the drainage from the stoma. I know some of my complaint is seem petty but if it didn't work, why have it. I hope this makes sense but it is hard to tell all the story

[leojohn in reply to alcv]

Thank you for your story. I appreciate your taking the time to relive it for me.

It must have been devastating as it takes courage to take it on in the first place.

I am trying to get as much info as I can before my husband's first assessment for the procedure.

There's a lot to consider and I try to weigh it all.

Thanks for writing a detail feedback of your experience.

Good luck with your current treatment...