Warning about PEG tube install

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jpruppe

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Everything we read made it sound so easy. But during the first day there were 3 episodes of severe pain, trembling, sweats, and lightheadedness that lasted about 10 minutes.

Not wanting to spend a restless night, we went to our local ER where the doctor agreed with us that spasms caused by the ALS needed something stronger than the Tylenol the surgeon thought would be sufficient. The ER doctor prescribed 3 days of Valium, which did the trick. Lesson: have something on hand as a muscle relaxant.

After a week, the tube feels fine, though still eating my usual mushy soft gruel.:-D

John
 

andyvaughn

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Thanks John. My husband doesn't have a feeding tube... yet. But the time is coming, and I will heed your advice for him...
Andrea - wife of Pals Jim.
 

CindyM

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Yes, John. Thanks for sharing. Glad to know things are a little better now.
 

Al

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Good information from someone who's been there, done that. Thanks.
AL.
 

j5rj5r

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Thanks John. My husband doesn't have a feeding tube... yet. But the time is coming, and I will heed your advice for him...
Andrea - wife of Pals Jim.
Andyvaughn
It may be better for John to get a feeding tube sooner rather than later. My wife got hers a few months ago while she was in fairly good shape and we didn't think she needed it. If she had to do it now I don't think she would survive the operation. She can still eat soft foods by mouth but just a couple of weeks back she started having trouble with liquids so we use the tube often. She did not want the tube installed until she absolutely had to but the doctor insisted and now I am glad he did. I understand all situations are different. just my thoughts.
Best wishes
j5r
 

jpruppe

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Follow-up on my PEG insert

j5r and others contemplating insert,
We agree with j5r that any PALS, especially with bulbar-onset, should have this done sooner rather than later. Two weeks ago, when mine was installed, I was still drinking easily and eating mushy foods pretty well. Now I am having some trouble with liquids and my voice is going fast.

:-DThe good news is that after two weeks, and a check by the doctor, there is no pain, little sensitivity, and just the slightest bit of ooze on a hot day after some walking or exercise.

My nurse wife advised me that if the operation is postponed, it becomes difficult and risky once atrophy of the respiratory muscles sets in. All the doctors at the ALS Clinic advised early installation.

Good luck, and my thanks to all those who replied.
John
 
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