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pastor

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Hello everyone. Just looking for some input. My mom ha bulbar ALS and can no longer eat by mouth so she is scheduled for a peg tube next Thursday. However, she is getting it against her ALS specialist advice. Her FVC is 45 and she is unable to breath while laying on her back. But she is so determined to get the PEG. The enterologist cleared her for surgery with a pulmonary function test as recommended.
Has anyone else had a peg tube inserted with your FVC so low? My siblings and I are concerned that with the anesthesia she may not wake up?
 

Nikki J

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She should be having it done under radiological guidance a RIG technically not PEG. Was this not discussed? RIG is what my neuro insists on

My sister was definitely lower than your mom in numbers and weak and emaciated as well when she had her RIG. She almost died and no general anesthesia. But later after she had regained weight she ended up having a bigger surgery under general and did well. I do not think her breathing was stronger but she was. How is your mom overall?
 

nebrhahe53

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My peg was put in with me in a semi reclined position. To hellp with breathing. I wish I knew about the radiological part, I had trouble because that wasn't done the first time. They went light on the pain drugs which really hurt for a few weeks. I was told that 40% fvc was the cutoff. You might also want to think about what will happen if she doesn't get the tube. She will either keep losing weight, which makes the disease come on faster, or she will aspirate food into her lungs and get pneumonia. This is one of the leading causes of death for ALS patients.
Also once we get a sickness, we don't heal like normal people. The disease again tends to get worse. Did she try Nuedexta? This is given for FTD but it helped me go back to swallowing almost normally.
 

lgelb

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There is no cutoff with a RIG. There are studies with FVCs of 17% and lower. The key would be staying on BiPAP through the procedure, having the head supported with pillows, wedges, whatever. Not lying flat on her back.

She should not be going into an OR esp. since it sounds like a clueless team in terms of ALS. What city is she in?
 

MaxEidswick

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>She should not be going into an OR esp. since it sounds like a clueless team in terms of ALS

Ditto that!
 

pastor

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>She should not be going into an OR esp. since it sounds like a clueless team in terms of ALS

Ditto that!
We are in Pittsburgh. I am definitely going to insist on the bipap during the procedure and hopefully the reclined position.
 

Janie H

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My breathing was in the seventies when I got mine, now at 32, they won't do anything. They didn't put me to sleep, just a local, I was awake through the whole thing, maybe they can try that, they did give me something, I remember being very sleepy.
 
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