I know first hand that BiPAP can be very distressing at first, it was tough for me to get used to. I have bilateral diaphragmatic weakness, not paralysis but I still required respiratory support. After I got used to it, it really was a godsend at least for awhile. The machine allowed my muscles to get much needed rest so that I wouldn't be gasping all of the time. As things got worse and I needed more and more BiPAP, I chose to get a trach and vent as I was on BiPAP 24/7 by that time and essentially bedbound. It has been over 5 years and I have been able to wean partially off of the vent, but I essentially live my life. For me, the vent was a better decision and took so much soul searching before I finally consented to it though....it is not an easy life, living on a vent and because I have other lung issues, it tends to complicate things. But, I will say that I have been given time that I otherwise wouldn't have had because I chose to vent.
It is not for everyone and trust me, it was the absolute last option.. As for you, maybe you should research centers that treat diaphragmatic paralysis...I am sure there are studies going on somewhere. I know that diaphragmatic pacemakers have been used, but patients have to meet certain criteria.
Good luck, I hope you find something that works for you
I'm a 54 year old man with restrictive lung disease and bilateral diaphragmatic paralysis. It's extremely rare, and I'd just like to compare notes with anyone who shares this affliction.
I use oxygen tanks 24/7 and sleep on a bipap machine.
I retain carbon dioxide, experience terrible headaches, and a loss of energy.
I'm always out of breath with the slightest exertion, and things seem to be going downhill steadily.
Several different doctors tell me that there isn't much they can do for me. I go to respiratory physical therapy 3 times per week and have been given meds for my heart arrhythmia. I'm trying to lose weight.
They tell me that a pacemaker, for me, is not an option.
I've been to 3 different doctors in the Boston area.
Are there any other suggestions?
My health is going downhill fast.
Thanks for the info didn't even know there was such a diaphragmatic pacemaker. This will be something I can check into. i just found out that even with the bpap. My oxygen is droppping so I'll prbably now need to attach oxygen to it. Once again thank for the info.
I have been spending time looking into possible cures for this paralyzed diaphragm I have had for about 6 months. I have seen some posts of things done, such as a nerve replacement surgery that is done at Mayo Clinic (I think it is in Florida). The pace maker sounds like it is usually reserved for those that have bilateral Diaphramatic paralysis, such as Reeves had, and I think it is only for use during short periods when your not on the vent. I will see the Pulmonologist next week, hope to find out more there. I hope that helps. - Good Luck