DPS and feeding tube

[patrick123]

I had my surgery to place Diaphragm Pacing System and feeding tube and all went very well. It looks pretty wired one side of my chest has the tube the other side has a plug in. I think I'm turning into a vacuum cleaner lol. I did have issues with with antithesis and spent 5 days in the hosp. And have home oxygen for few weeks. But else is good

 

[ottawa girl]

Congratulations Patrick - you got through it. I wish you well and I'm eager to learn more about your DPS experience.

Unfortunately, DPS is not available in Canada. I'm weighing pros & cons of having it in the USA. My pulmo here said he would support my efforts. The follow up visits and management of the pacer itself up here are the sticking points.

Best to you! Get well quick.

 

[affected]

heal fast Patrick.

I bet it is good to be home again, and over the worst part.
I hope all goes well and will be interested to know how you find the early days with the peg. There is a new forum section for peg discussion. Will be a good section for you also if you have any problems or questions.

My PALS gets his peg inserted Friday next week, so I'm soaking up anything I can find about it.

 

[mbmurray]

When I was at the Mayo Clinic last month for the screening visit for the stem cell trial, I talked to the neurologist about DPS. He stated that in his opinion there hasn't been proven data to show that the DPS makes a difference. That they don't encourage PALS getting the DPS but if they request it, they will do the surgery... Not at a point where I need something like that, but trying to plan ahead...

 

[Txgirl]

I am so glad your surgery went well Patrick. Going for my DPS evaluation 21-23 of this month. Please keep us updated on how the pacer is working for you.

 

[patrick123]

Txgirl I really your evaluation goes well. When I went for my eval. They did not detect the phrenic nerve during the EMG that was a great let down. And then we did the sniff test the diaphragm looked ok and was responding the it should. Often time the don't detect that phrenic nerve during the EMG that's why they do 2 different tests and during surgery they got a good phrenic nerve response. Are you also having your peg tube installed at the same time?

 

[Janie H]

Hi Patrick,
Glad all went well, my breathing is my worst symptom, you give me hope.

 

[Ms. Pie]

I passed all my tests and meet with the surgeon on 10/09. Nervous! Glad all went relatively well Patrick! Keep us posted as tp progress!

 

[Txgirl]

Txgirl I really your evaluation goes well. When I went for my eval. They did not detect the phrenic nerve during the EMG that was a great let down. And then we did the sniff test the diaphragm looked ok and was responding the it should. Often time the don't detect that phrenic nerve during the EMG that's why they do 2 different tests and during surgery they got a good phrenic nerve response. Are you also having your peg tube installed at the same time?

Thanks for the info. it is much appreciated. I do not want the peg tube since I have no problems at all eating and swallowing. I am so glad you are doing well.

 

[ottawa girl]

Miss Marta

Great news! 2 more sleeps. Good luck, my friend!