Swallowing, mucus, and coughing- is it leading to aspiration?

[Jillian100]

We are still awaiting my husband’s appointment with a neurologist on the 26th. But, recently we have a new problem. He is starting to cough and hyper secrete mucus when he starts to eat!! Sometimes, it gets pretty bad. He says he is not aspirating, but I’m not sure. Ken already had excessive mucus from neck irradiation and for years, he kept saying it was getting worse- and the swallowing, as well. He had multiple swallowing studies but doctors told him it wasn’t his esophagus shrinking. As I’ve started putting the pieces together, I now see that this aligns with MSA symptoms and I’m having more “aha” moments. But he is really struggling, with all the excess mucus and now even more difficulty swallowing. I’d really hate to see him back on a PEG again. I might have to change his advance directive, or is it irrelevant now? This is just so hard to watch, and it has been for 10 years- we’ve been trying to figure out what is wrong after his chemo and irradiation starting two years after treatments. 8 years since symptoms began, trying to research and figure out what’s wrong because doctors haven’t. What do I look for with regard to aspiration and hyper secretions of mucus?

[binnyrox]

hello

I had excessive secretions for a while and had it resolved

1. The simplest solution is an off label use of Atropine drops. It’s regularly prescribed by doctors - 2 drops under the tongue does the trick. However - ensure the mouth is dry otherwise the drops will be diluted and it won’t be effective

2. As my MSA progressed - that wasn’t sufficient. The ENT injected Botox into my parotid gland. That was very good - a top up was required perhaps every 3-4 months. I was told the injection at this location would reduce secretions by about 40%

3. Subsequently with further progression, I required Botox to the sub-mandibullar gland - which has to be done under guided imagery . It works very well for now. My secretions are a minimum

4. To remove secretion - my caregiver was taught to use a suction machine. It’s really not difficult to learn especially if you use and airway guide when inserting the suction catheter. I choose a softer brand catheter - it’s less traumatic to the throat. Chest doctor said it was important to suction until ‘dry’

5. I aspirated so many times eating - ICU with pneumonia that I get all my nutrition now from the PEG. I use Diben as I’m diabetic and I blend in avocado powders, hard boiled eggs, EVOO, for the extra calories. This has been reviewed by the dietitian. The blender I use is Vitamix - gives an excellent consistency

At this point my speech is poor - my regret is I didn’t do voice banking earlier

Hope some of the information is useful

Kindest regards BR

[Paul_and_Sue_Wood]

Hi

My Sue suffers with swallowing issues and this has led to aspiration pneumonia. I have a range of emergency antibiotics to alleviate this when it happens as it so dangerous for her.

We have a peg and its a god send as it limits the risk if we hadn't had it fitted 5 years ago I can say categorically she wouldn't be here.

Sue still eats and drinks but small amounts and always with someone at hand.

All you can do is limit risk by use of medication and intervention.

Paul

[Kaye31]

atropine drops. We were exactly the same. 1-2 drops wait 20 mins and eat! Apparently taste disgusting but enables a meal to be eaten

[Heronblue]

My husband has been prescribed Scopoderm 1.5 mg patches aka Hyoscine patches. 1 is not enough, 1 and a half is too much and makes him tired so we do 1 and a quarter behind the ear. I’m going to ask to try the Atropine drops mentioned in this conversation.