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Mar 3, 2008
Loved one DX
My Father's Doctor has decided that he get a feeding tube. I am a little puzzled by this as my Dad has no issues with eating and swallowing. He has lost a great deal of weight in the last couple months and this has greatly concerned the Doctor's. Is it normal for feeding tubes to be used when the patient has no swallowing problems? I am just worried about my Dad having surgery and being back in the hospital. The last time he was in the hospital, he completely lost the use of his legs. I am scared he will loose more mobility since he already has limited use of his arms and hands. He was diagnosed in Februrary of 2008 and he has just progressed so quickly. I am just having a tough time watching him get weaker and weaker. It breaks my heart.

hi Jessica,

Usually the docs want to get a PEG for the PALS before they get to the point it would be impossible for them to handle the procedure.

They advise doing this before breathing becomes a very difficult issue.

If your father has lost a lot of weight, he needs some way to obtain nutrition to gain the weight back. It sounds like he may not be taking in a lot of calories. He may still be able to swallow, but his muscles may be weakened and eating may be tiring for him, thus restricted food intake.

If your father elects to do this, it should help him. And like I said he does need this procedure before breathing is severely hampered.

Good luck to you and your Dad.
Hi CJ. I am confused about the relationship to breathing and a PEG. I thought a PEG was for swallowing issues.
Feeding tune

Are the doctors concerned about performing surgey on a patient if breathing is an issue? My Dad mentioned them performing a lung function test before going ahead with the surgery.

Thank you very much for your response.

Quoted from

General anesthesia suppresses upper airway muscle activity, and it may impair breathing by allowing the airway to close. Anesthesia thus may increase the number of and duration of sleep apnea episodes and may decrease arterial oxygen saturation. Further, anesthesia inhibits arousals which would occur during sleep. Attention to sleep apnea should continue into the post-operative period because the lingering sedative and respiratory depressant effects of the anesthetic can pose difficulty, as can some analgesics.

This is most likely why they prefer to do surgery before any respiratory issues arise.

OK That makes sense. I had an appointment with a pulmonary doc today and she recommends another visit to the ALS clinic. My breathing is mild-to-moderately impaired. Looks like I will be learning how to become one of our resident experts on respiratory issues, LOL. So much for declaring myself cured, BTW! :-D
Jessica, I understand all your concerns. My Father just had his PEG about a month ago. His first try failed about three months ago. In the past several months, we saw several doctors. Based on my experience, the interventional radiologist is the best approach, because it doesn't need general anesthesia, only IV and local anesthesia. It is riskier for ALS patient to go through general anesthesia. I took my Dad to an interventional radiologist and a surgeon before. We decided to go with the radiologist; even he failed at the first time. Another benefit is much shorter hospital stay. Patient can go home in about 4 hours after 20 minutes procedure. PEG is necessary for ALS patient at certain stage. Aspiration of the food may cause pneumonia, which is life threatening for ALS patient. Good luck!
Here's a cut-and-pasted quote from the wonderful website of Diane Huberty RN which provides a further explanation of why PEG placement is indicated before FVC is less than 50%:

"As swallowing problems develop, the patient needs to consider whether or not to have a PEG tube placed for feeding. Patients often put off doing this until weight loss is dramatic and every meal a frightening and exhausting battle with choking. The general consensus among ALS patients who have had it done is that they only wish they had done it sooner. Improved nutrition and fluid intake results in a big improvement in their general condition.

Patients whose respiratory status is deteriorating need to consider having the tube placed even if swallowing is not yet a major problem. Once FVC falls below 50%, the procedure for placing the PEG tube is complicated by the patients poor respiratory status. Weakness of the diaphragm (the muscle between the lungs and stomach) and shallow breathing have also been reported to allow the stomach to shift upward further under the rib cage making tube placement difficult. It is not at all uncommon for the procedure to be tried and canceled if left until breathing is significantly impaired. Earlier insertion of the PEG tube is now recommended in order to avoid both weight loss and problems in placing it. The patient can continue to enjoy eating orally and gradually supplement oral intake with tube feeding as swallowing deteriorates. Once placed, care of the tube fed ALS patient does not differ from other patients with tube feedings."

Also, general anesthesia is not usually used for PEG tube placement so artificial airway maintenance is not an issue. Conscious sedation is used instead which brings the patient just to the brink of being anesthetized, but still allows the patient to maintain an open airway without artificial means (i.e., without insertion of an artificial airway). Arousal time post-procedure is therefore fairly rapid and without the groggy side-effects imposed by general anesthesia.

All the best,

What they said in much more detail than I.
Jane, your quotation make a very good point. I think the reason for my father's failure of the first PEG placement was that weak diaphragm caused the stomach to shift upward further under the rib cage.
Jessica, try to talk to more doctors, since the procedure could be done by a general surgeon, an interventional radiologist and a GI doctor. Each doctor and hospital may have different way of doing things. Try to avoid the general anesthesia. Some general surgeon could also perform the procedure without general anesthesia if they could use NO (nitrogen oxide) instead of CO2 to inflate the stomach. Another thing to consider is that the general surgeon has poke 3 openings. The reason my father didn't go with a GI doctor is because his neck muscles were very weak.
This is a very informative thread. Thank you, everybody.
My mom got her PEG last fall, when she also got a trach due to complete respiratory failure. It's interesting to read this information now because our doctor did not seem at all concerned about the PEG placement. Of course, she was in the hospital for an extended period of time anyway, so maybe they figured that they could redo the PEG if it didn't work the first time. We haven't had any problems with her PEG--it's convenient and doesn't seem to bother her (except that she sometimes worries about it being pulled on).

It sounds like the best plan is to get a PEG before breathing becomes a real problem. I just wanted to mention my mother's experience for those who worry that it might be "too late" if they missed that optimal time for the surgery.
Too Late

I am concerned that we have waited too long..........Freddie is so thin and can hardly swallow anything. He has opted for a trach but they are scheduling the whole thing as just a peg, I am worried that he will not make this adventure. I am praying for the best outcome. He is on his Bi-Pap 24/7. We lived in denial for so long that they were wrong and this only happens to OTHER people, we are in the rock and roll biz, so you know the theory that we are non destructive, I am totally blown off when asking about the trach, I feel that there are many details that I need to know. I will call them on Monday and get more details.
The surgery is the 30th, I am hoping and praying for the best, his aide of a year has told me that she is not going to be able to deal with the trach, actually she has me scared to death. She has told me that they stink and we will all have to wear gowns and all kinds of other BS. I know that as Freddie has progressed, she hasn't in her care for him. It is time for her to go anyways.....
I am always looking for the best!
thanks again for all the support that we get and give to each other!
Hi netty, I will keep Freddie in my prayers. Are you still working? Aren't you off on Mondays? God, I have been feeling so bad about not coming over. I would love to, but I would hate to intrude. I need to know when it would be the "okay time." Didn't you say Freddie's b'day is on the 26th? Tell Him, I have not forgotten about him. Tell him we love him, and have been praying for him.

My son had a birthday on the 18th. It would have been the big 40 for my baby. He celebrated his b'day in heaven. My sister in law and I we went to the cemetery, his 18 year old daughter was already there when we got there. We delivered some cuties to the cemetery, but boy, was it HOT! We were almost drenched by the time we left. All that mattered was spending some time there.

Netty, keep us posted about Freddie. Tell him we said hi. God bless you folks. Let me know when we more or less can get together, I would love to meet you guys! God bless!

Netty, you can tell that aide from me she is an idiot. Trach's don't stink anymore than any other surgery if you look after it. She does need to be replaced with that attitude. Ask Mike (Quadbliss) he's just came back from New York after flying with his.
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