This article is incomplete.
Tracheostomy, often called trach for short, is a surgical procedure whereby an opening is created in the base of the neck and trachea (windpipe) to facilitate breathing while bypassing the upper airway, which includes the mouth and nose.
The stoma inserted in the opening connects to an external ventilator, which facilitates breathing. This arrangement is known as invasive ventilation, as the ventilator operates directly on the lungs.
ALS patients qualify for tracheostomy when non-invasive ventilation is no longer able to meet their respiratory needs.
Tracheostomy is one of the most significant medical decisions an ALS patient will make during their journey, as it is an invasive surgical procedure, and it creates the possibility of extending survival by many years.
A 2017 study found that 16% of ALS patients chose tracheostomy, of which 38% were planned, and 41% were unplanned[1].
🚧
🚧
🚧
Easy answer for me: trach is way better when it comes to quality of life.
NIV (non-invasive ventilation) masks are a pain if worn for 24/7. After a couple of weeks, you will barely notice the trach. It will feel just like normal breathing. This will never be the case with NIV.
The medical procedure itself took 20 minutes.
The first weeks can be terrible: a lot of coughing and discomfort. It made me question my decision at first. But it got better soon after.
The cannula has to be swapped every 1-3 weeks to prevent bacteria growth and infections. This is the only unpleasant part in my opinion, as the cannula is pulled out of the stoma. But my care-team is very experienced, so it only takes a couple of seconds.
Some people will say that the required 24/7 care is a major disadvantage. But if you reach a certain level of paralysis, you will need that anyway. Same applies to 24/7 NIV use in many cases.
My trach care takes around 15-20 minutes per day. Time spent on coughing is reduced significantly, as the cough-assist works way better with a trach.
You can still talk with the proper hardware. I never tried it, because my voice was already gone when I got the trach.
You can also still breathe on your own with a filter attached to the cannula.
A trach will give you a sense of security that a NIV cannot provide, as it effectively blocks fluids, phlegm etc. from entering your lungs. Its a closed system and you will always be able to breathe.
If you ever experienced throat-spasms before and the related inability to breathe, the moment you experience this with a trach, it will feel surreal. Because from now on, you will not have to worry about anything that happens above your trach. You will just keep breathing.
While I was on NIV, I had to consciously coordinate breathing, swallowing and secretions all day. Woke up several times at night, because I was choking on something. I was having several panic attacks per day.
That is all gone now. I can sleep for 8 hours straight; my caregiver can sleep for 8 hours straight. I can fully enjoy whatever I am doing during the day. The trach gave me back my life.
I talked to several other ALS patients with a trach before making my decision. Some got the trach voluntarily, some due to medical necessity–like myself. No one regretted their decision.
– Redditor
/u/wckly69This testimonial was used with permission. Some minor changes, including grammar corrections were made. View the original Reddit thread here. Note that the testimonial has since been deleted from Reddit.