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!
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!