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Suggest Treatment For Weak Torso Muscles

Posted on Fri, 17 Feb 2017

Question: I am 32 years old and have end stage ALS. I have a rare form called torso onset ALS and have been fighting since 2010. My torso is as weak as paper and all I have is ribs and lungs. My question is whether someone can be too weak to be placed on invasive mechanical ventilation and if any muscle is needed to do so.

Answered by Dr. Sudhir Kumar (12 minutes later)

Brief Answer:
Mechanical ventilation is feasible.

Detailed Answer:
Thank you for posting your query.

I am Dr Sudhir Kumar, Neurologist, and would try my best to help you.

I have noted your clinical details. Based on this, it is feasible to put you on invasive mechanical ventilation, and good muscle functions are not needed for mechanical ventilation (the ventilator can take over the function of breathing muscles). However, the only problem is weaning off the ventilator. Once you are ventilated, it often means life-long ventilator.

I hope my answer helps. Please get back if you have any follow up queries or if you require any additional information.

Wishing you good health,

Dr Sudhir Kumar MD (Internal Medicine), DM (Neurology) XXXXXXX Consultant Neurologist
Apollo Hospitals, XXXXXXX XXXXXXX
Click on this link to ask me a DIRECT QUERY: http://yyy.yy/Dr-Syyyyy-yyyy
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Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar

Answered by Dr. Sudhir Kumar (13 minutes later)

Brief Answer:
Yes, you are right.

Detailed Answer:
Thank you for getting back.

Yes, weakness makes no difference on invasive mechanical ventilation. The most weak person with almost no muscles can also be ventilated.

Best wishes,

Dr Sudhir Kumar MD DM

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar

Follow up: Dr. Sudhir Kumar (5 minutes later)

So weakness makes no difference on invasive mechanical ventilation. Weak as paper, have been told by neuros that I have worst torso damage ever seen. One can literally vent no matter how bad there body is? Thanks for the answer.Thanks Doctor. At what point do you have a pulmo put your ALS patients on invasive mechanical ventilation? Do you do it when they go into respiratory failure or before to make things easier? Do you do it based on forced vital capacity or blood gases. Right now, my FVC is nearly non existent but holding blood gases reasonably well, o2 Sats around 93% and co2 at high range of normal. Told it is because even though I have no torso muscles, back, chest, stomach non existent, like they were dipped in acid and melted away, my diaphragm is still functioning reasonably well. There is a differing viewpoint on this matter. What is your general opinion?

Answered by Dr. Sudhir Kumar (36 minutes later)

Brief Answer:
I rely more on blood gases.

Detailed Answer:
Thank you for getting back.

It is not wise to wait until respiratory failure ensues, as it would be an emergency and uncomfortable for the patient.

So, I rely more on blood gases. Among various parameters, if pCO2 is more than 45 mmHg (daytime) or >50 mmHg (night time), then, it is advisable to mechanically ventilate the patients. Drop in O2 saturation occurs later, and it is not wise to wait for that either.

Best wishes,

Dr Sudhir Kumar MD DM (Neurology)

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar

Follow up: Dr. Sudhir Kumar (23 minutes later)

Thanks doctor, many of these pulmos and neuros even at top notch institutions will not vent until patient goes down. I have always thought this is absolutely incorrect as it creates a emergency and a much harder transition time to healing from the trache surgery. Their logic is that once an ALS patient is vented they are not coming off. However, if one is seeking long term survival then it should not matter. My daytime co2 is borderline at 44mm/HG. At night is it 49 mm/HG. I can feel the co2 retention. I was using Trilogy and still am in non invasive Bipap mode but not helping much anymore. I need to see a good pulmo who will vent me before I go down. One more question. Does length of survival on invasive mechanical ventilation have anything to do with how weak someone is, or is it based on avoiding infections, etc.?

Answered by Dr. Sudhir Kumar (3 minutes later)

Brief Answer:
I would prefer early ventilation rather than later as an emergency.

Detailed Answer:
Thank you for getting back.

I would agree with you that it is better to go for earlier ventilation, rather than later.

Your blood gases are deteriorating and you may require invasive ventilation soon.

The most common cause of death is pneumonia, so, it is important to prevent aspiration pneumonia and urgently treat as and when it occurs.

In older people (above 60 years), death rate is higher due to heart attacks and stroke.

Survival most likely is not related to how weak someone is.

Best wishes,

Dr Sudhir Kumar MD DM (Neurology)

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar