My mom has PSP stage 4, with peg installed nov 2016. Last Wednesday she was hospitalized with aspirated pneumonia. They ventilated her and removed some food we think might have been from pleasure feeds no more than 6 -1/2 teaspoons, stop if she chokes. The Tuesday before she had labored breathing and mustard up the word "Cold". On a pain scale of 1-10 she indicated 4, we communicate almost completely by finger movement. Why I say this, I can't keep thinking she had a two fold problem with a cold, producing excess mucus.

Now the pulmonologist suggests tracheotomy installed to ease breathing, and suction of the mucus. She has been on the patch since Friday , added a second pill in conjunction to minimize the mucus but still needs suction.

Mom has agreed to the tracheotomy, we have consented as they indicated it will ease her breathing, cutting the distance in half for air into the lungs, bypassing the mouth. They also say 90% plus will be suctioned from the trachea not having to do the Deep Throat suction as much.

Has anyone experienced this or heard of this being used to help living with this disease?

9 Replies

  • Hi oh gosh how awful and no I have not heard of this but expect the doctor thinks it is the best solution. I would not be very happy about it!

  • Not heard of this either. In fact they told me they wouldn't put my husband on a ventilator. I think they just thought he was too ill for all of that. I did wonder about a tracheotomy and I thought it would be too much for him. I had read it in relation to something not necessarily PSP.

    He had actually had one when he was a little boy and I thought it might scar him again. On balance I thought it wouldn't be right for him.

    However it sounds like your Mum has had a lot more done to her? How old is your Mum? If she is stage 4 is this going to cause her more distress? Only you can answer those questions.

    Marie x

  • Sorry to read this. Does your mother want to have the trach for the rest of her life? Will she be attached to a machine to breathe? Does she want this? Can this be managed at your home with family members? Will they need to be accessible round the clock? Or will you have to hire respiratory therapists? How will she eat?

  • No have not experienced this, But it does sound like they have good reasons for such an implement.....I wish I could give you greater insight...

    Goodluck AVB

  • Change of plans. Mom wanted to hold off, meanwhile receive pain meds. We had a meeting with hospice, offered mom pain management allowing her to be able to get back to her room at the care facility. Thanks all for your responses.

  • please consider her quality of life post tracheotomy as well, that's the most important thing, it's a surgery and in PSP usually a surgery brings a patient down by one stage

  • Thank you Sammy. Thank you for your post.

  • Hi RobK,

    We had bad experience with it. It is not a good idea especially for PSP patients as their bodies are weak. My father spent three months in and out of the hospital from the day they performed the surgical tracheotom (on Dec 2016) on him and he passed away (March 10 2017).

    The doctors told us it is better for him but after the surgery, they admitted that he will get infections very easily because his body is very weak.

    Sorry I dont want to scare you but wanted to share our experience. I am not sure where you live, they might have better techniques. My father was in lebanon and at that time the doctors admitted that it was not good for him but they had no other solution.

    It needs cleaning daily + suction (depends really but at least 3 times a day). She will also need the oxygen machine.

    Best of luck.


  • Julia,

    I'm sorry for your lose. Thank you so much for sharing. This helps clarify our decision, as my mom is also weak. Thanks

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