Duopa pump

[AliceJoyce]

Has anyone here had a Duopa Pump attached to Surgically implanted JPEG tube procedure done? I would love to hear about your experiences.

[cabbagecottage]

Will be jnterested in any replies

[Anae]

My husband had surgical procedures to implant the tube that inserts in duopa pump. Before the duopa, he had cramps in legs, abdomen and neck with a pain that drove him crazy. After duopa, the cramps have diminish in occurance and intensity. He has a much better quality of life. The only problem he has had is with the tubing which irritates him. The neuro recomended to see gastro to see if tube could be change for a thinner and flexible one.

[alcv]

Hello ! My Duopa story is long but I will try to make it short. The JPeg tube insertion surgery is a simple procedure but mine turned into a nightmare. The gastrointinal MD had a hard time getting the tube to float down to the jejunum because my intestine was spasming. He was in there longer than anticipated which meant I received more "gas" . ( I was only the 2nd person to have it done at this institution). So, I ended up in severe pain & went to ER and they had to transfer me back to the hospital the surgery done. I had to have emergency suorgery because my stomach dropped & it had to be stitched back up. There was infection behind my gallbladder already. I stayed in the hospital for 7 days.

Now, the Duopa med & pump. The 1st time my neurologist set the dose ( there is a formula they follow) she overdosed me, we found out later. She wanted for me to stay on my meds & just give me a low dose. The theory sounds good but it didn't work for me.

The tube had a small infection the whole time, I didn't like that you had to get the cassette out of the refrigerator & wait 20 min to hook up. I hated the pump. Didn't know where to wear it. I thought it was bulky. As you can

[alcv in reply to alcv]

Sorry hit the submit button. As you can tell, I didn't get along with Duopa. And the cost of it is outrageous. The Assistance Fund was paying for mine but that wouldn't last forever and I definitely couldn't afford it.

One thing I forgot to mention. I go to 2 neurologist & one of them did part of the research on Duopa & he said it is very hard to regulate the dose. It didn't change anything for me so why be burden with a pump & tube hanging out my stomach so I had the JPEG tube removed. And I feel so much better mentally because I don't have to worry about the tube.

Sorry I didn't make my story short & I hope it makes sense.

[Enidah]

Thank you for sharing your story. This procedure doesn't appeal to me and now I know why. I think I would prefer DBS.

[AliceJoyce]

I appreciate your responses. We are having a hard tie regulating an effective dose. It is very frustrating.

[Kipper1285]

I TRIED SEVERAL DIFFERENT WAYS TO ADMIISTER MY ORAL MEDS AND HAD SOME SORT OF PROBLEM WITH EACH AND EVERYONE SO IT CAME DOWN TO DBS OR THE DUOPA PUMPAND SINCE I WONT LET ANYONE MESS WITH MY BRAIN I CHOSE THE PUMP .. I;'M GLAD I DID , LITTLE BY LITTLE WE ARE IRONI NG OUT THE PROBLEMS I THINK IT'S TURNED OUT TO BE THE BEST DECISION I HAVE MADE