ALS diagnosis after neck surgery

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Jills Sister

New member
Apr 10, 2021
Loved one DX
My beloved sister in love Jill was diagnosed a few months after a neck surgery at 57. She progressed quickly. Heard might be the general anesthesia that sped it up. She was having random strange things before surgery but thought from disc problems in neck. Diagnosed Dec 2020. Now on hospice April 2021. Constant problems with NIV mask leaking and now breaking down nose skin. They added oxygen too and number changes daily. Can't have mask off but for a minute. The formula she was on tortured her stomach so praise God we found realfood for her Joey and Peggy as we call them. We've had almost no support from her Chas hosp. The home health company then palliative co then hospice co has been a God send. So has my church. I am new to this and have so much to say but not sure limits. Prayers requested first. Ok, what mask make and model has worked best for others? She can't potty in bed in or on anything including purewick which was a bear to get.. Any suggestions other than cath? Tried the standards, running water, hands in water, massage, etc. If she wasn't in pain she'd be up in her wheelchair. On gammit of hospice meds but moving hurts her badly. She has a great attitude, is a believer and we want her to have the best care but are struggling to figure out how to help her better. Our prayers are with everyone with this mean disease and caregivers.
I'm very sorry to hear about Jill. She is lucky to have you.

What kind of mask does she have now? Have you used "gentle paper tape" or a liner made from cotton (commercial or homemade) for her nose bridge? Keeping her face and the mask clean are also important.

I like the Circadiance SleepWeaver nasal mask with the narrower hose option if she can use a nasal mask. If she must use a full face mask, there are also some good options depending on what she's tried

She should not be in such pain that she cannot transfer. Are you sure that her BiPAP settings are the best they can be? Sometimes not being able to breathe well can be mistaken for pain -- it is, in fact, painful. If you can tell us more about what meds she's on for pain and where the pain is, we might be more helpful.

I also have to note, as perhaps hospice did, that oxygen will likely shorten her life over time, unless it is low-flow and there is a real non-ALS need for it, like high altitude, which I wouldn't imagine is the case in SC, or severe pre-existing COPD.

Thank you for standing by your sister. Please use the Religion section for prayer requests and similar content.

Laurie has mentioned my favorite mask (the dreamweaver), but in truth I kept three handy and rotated them as my husband was never comfortable in the same one for long. As Laurie also mentioned, skin care is critical--we washed my husband's face twice a day and the mask was washed with soap and left to dry daily.

Other women have had the suprapubic catheter put in and loved it. I think there would be much less danger of infection and I don't remember complaints of discomfort.

I'm so sorry about what your sister is suffering. Pain on top of everything else is so miserable.
there are full masks that don't have to go over the bridge of her nose. The Amara View is one that worked for me for awhile. I have rotated masks quite a bit.

I currently have a Foley catheter. I hate it and have had near constant UTIs. But I don't know what alternative there is other than suprapubic.
what kind of neck surgery Jills Sister was it an anterior cervical disc diffusion C6 C7 by any chance? As I had the same thing happen to me I became dizzy afterwards laying down the room would spin, then I developed a rash, then I had strange allergies symptoms and the allergist diagnosed me with asthma then a spasm changed meh voice and my Family Doctor thought I was depressed and that was why and then CVOID hit and eventually a year later I fell so many times that I begged to see a neurologist I had an EMG and he diagnosed me with devastating news of ALS...
JoJo, if you have only had one opinion relative to your ALS diagnosis, we always advise a second opinion.
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