Status
Not open for further replies.

Colleen82

New member
Joined
Sep 13, 2013
Messages
3
Reason
Loved one DX
Country
US
State
Oh
City
Shaker heights
Hi again -
We're looking into Diaphragm Pacing Surgery for my dad and I'd like to hear other people's experiences. His FVC is just under 50% and the lung muscle (rather than the nerve) is what is most severely affected by his ALS. He has strength in his arms/legs/hands and outside of the breathing, ALS is progressing relatively slowly at this point. He lives in Buffalo, NY but us kids are in Cleveland so we'd likely try to do the surgery at University Hospital in Cleveland… but Syracuse is also an option. Anyone have experience on this?
Thanks!
 

patrick123

Distinguished member
Joined
Oct 4, 2012
Messages
441
Reason
PALS
Diagnosis
09/2012
Country
US
State
co
City
thornton
I just had the DPS surgery on 9/25. It takes a bit to used to using. My doctors think it will 16 months on top of the time I would need invasive ventilation. In he would have to go through an EMG to check the phrenic nerve a sniff ex ray test and FVC to see if he qualifies for the DPS. Right now I only use it for two hours a day to get used to the stimulation. And to start conditioning the diaphragm as time goes by the time will increase as my FVC decreases.
 
Joined
Aug 17, 2013
Messages
25
Reason
PALS
Diagnosis
06/2011
Country
US
State
NC
City
Zebulon
I am pacing full time now and think it is a big help. Its best to go for it as soon as you can. Studies show it extends your life and there is a narrow window to where insurance covers it.
 

Colleen82

New member
Joined
Sep 13, 2013
Messages
3
Reason
Loved one DX
Country
US
State
Oh
City
Shaker heights
Hi again - Thanks for your responses. My dad went to Syracuse yesterday for testing and is considered 'borderline' for the breathing portion and will need to go back for additional testing of his diaphragm to see if he qualifies.

How invasive was the procedure and how long did it take both of you to recover?

He is having real concerns about how this will truly affect him. He is concerned that his quality of life could decline rapidly, while his breathing stabilizes with the DPS.

Only 3 people have done DPS through the clinic in Syracuse and unfortunately one has passed away, one was determined to not be strong enough the day of the surgery and thus didn't have it inserted, and the third has had it for 6 months but they didn't give many details to it's 'success'.

Your experiences, opinions, and insight are really appreciated.
We're just having a hard time with the decision (assuming he qualifies) and it would help to talk to people who have been in our shoes.
thanks so much!
colleen
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
My FVC was at 51. I spent a week in the hospital post surgery. It was hard on me.
 
Status
Not open for further replies.
Top