MIP and MEP

[christinelsmith]

2024 numbers DEC OCT APRIL
Mip upright 24 36 48

MEP Upright 12 28 40

MIP supine 20 32 40

MEP supine 12 24 36

Any advice??? I am using a Bipap all night and a few hours during the day. Not sure if my numbers show I need a tracheostomy or when I should get a feeding tube.


Thank you for all you words of encouragement and help on all the thread I have read.

 

[Marieb425]

Hi Christine, are you going to an ALS clinic or to a neurologist? I found they would recommend things to us as they were needed (I.e. they recommended a feeding tube early on, they asked if my husband wanted a trach (no), and if we had a POLST form completed with his wishes when they thought that was necessary). Otherwise I don’t feel qualified to make recommendations but I did want to comment since I saw you didn’t have any replies yet

Best,

Marie

 

[Nikki J]

About feeding tube if you want one the earlier the better if you have either swallowing issues or deteriorating breathing. The latter is because it's easier on you the better your breathing is. You can still eat with a tube so you don’t have to use it.

Trach is harder but it is also true that if you want one it is best not to wait until the last minute.

As Marie said it is important to discuss with your doctor and family and to be frank about your wishes and expectations

In the meantime you might want to use your bipap more.

 

[lgelb]

A trach would not normally be considered unless you were still having difficulty with 24/7 BiPAP, which fortunately you seem not to need yet. But I would certainly not keep BiPAP use at any arbitrary number of hours or time of day -- use it when it makes you more comfortable, so it can give your muscles the rest they need.

But if you are considering a trach, it's definitely not too soon to get more information on it -- videos, reading on line, preferably seeing one in action -- so you can make an informed decision that is not rushed, if/when that time comes.

The MIP/MEP numbers do not match up linearly with whether you need a trach or not. Some people adjust more readily than others to shallower breaths, and the right BiPAP settings, which should be adjusted with progression, help this happen.

A feeding tube is recommended when swallowing food and/or liquids becomes difficult -- a separate thing. With a skilled radiologist, it can be placed while you are using the BiPAP, which is recommended. I would certainly start researching centers that can place it under these circumstances; not all have this experience.

How is your eating/drinking?