Dropped head syndrome
- Thread starter Jan kench
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Hi Jan, and welcome. I'm sorry to hear about your husband.
If you mean that his neck cannot support keeping his head upright, that is not uncommon. A cervical collar, starting with medium- or firm-density foam and moving up to plastic if foam is not enough, is usually advised. Your clinic or an online store will offer these. Selecting the best neck height is important so there is enough support but not breathing obstruction.
If he uses a wheelchair, keeping it enough in tilt and recline to provide support, along with what is often a nonstandard neck support (the Savant is one to look at) or a kludge with cloths or pillows will usually help.
If you mean that his neck cannot support keeping his head upright, that is not uncommon. A cervical collar, starting with medium- or firm-density foam and moving up to plastic if foam is not enough, is usually advised. Your clinic or an online store will offer these. Selecting the best neck height is important so there is enough support but not breathing obstruction.
If he uses a wheelchair, keeping it enough in tilt and recline to provide support, along with what is often a nonstandard neck support (the Savant is one to look at) or a kludge with cloths or pillows will usually help.
Nikki J
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I would have thought it more common than this study which is old. I believe my sister had it though perhaps not my other family though they did have some degree of neck weakness
Agree with above recommendations. My sister stayed in tilt all the time when out of bed. I would add be aware that the neck muscles protect the vertebrae My sister had a fracture while being repositioned in bed because hers no longer did
Gizzmo
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My husband was diagnosed Dec 2022 and has this with his head and neck. He is no longer able to hold his head up on his own he can for a few seconds till I can get his neck brace on and fitted. The top of his back up to his neck is curved forward really bad. I was looking for a plastic neck brace for in the shower when doing his hair and shaving.
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Hi, Gizzmo. I find the collar-type support too uncomfortable, and use a band of T-shirt material instead of the band which comes with the Savant headrest that Laurie mentioned, for computer and meals. My wife shaves me with an electric shaver, and I can recline my chair to support my head; same for TV watching. For showering. the Shower Buddy chair reclines for head support. They are pricey so check with your ALS Association about loaners.
SeaGunny
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Wheel chair with reclining back may help. My PALS spent most of her time in a transport chair. The issue is very serious, She got sores on her chin and chest. First appliance the doctor got which looked like some king of spring had a warning sign with it It said to be "adjust by a qualified specialists. Seeing as how she got red marks in her clavicles (I am not a doctor - I failed First Aid), on the one hour drive home, I asked about that and got sent to a :specialist;s office for a new fitting. He ordered the same thing and fitted her with it. When we got home from a 30 minute drive home, she still ended up with all kinds of welts on her upper chest. She tossed that one into the trash when we got home.
So, she found one she thought would work that would allow the elevation of her head (angle was adjustable as was neck sizing). Sound good? Nope! As I raised the chin angle to allow her to view what she might want to see, her chin would drop through the chin support, I got another one to specifically address this issue. These are not cheap running and cost between 70 to $200 or more.
Most say not to be used longer than 15 minutes. I found a product that I THINK can be used as an alternative or at least a complimenting device called Iron Neck which appears to allow the wearer to be able to turn their head but this device is used to build neck strength. It is attached to something as it appears to be like a hat without a top. The device has head bands to keep it attached to the head and the "hat band" appears to have only one wire attached to what is obviously a track allowing it to move to new positions. I think (1) it needs to have 3 attaching wires and have an upright stand of at least three upright poles (much like a medical tree) to allow wire attachments to be set at preferred height.
So instead up a device pushing up and the patients body and shoulders, the head can be suspended from above for a true (comfortable) holding position and still allowing a left -right head turn ability.
I have not called the retailers or manufacture as yet but I do plan on it. However, you are on the right track in that this device would cover the under chin - basically the patient could not be fully shaved using this device. I also have a neck brace I never fitted to my PALS, mainly because I did not want to hurt her and her condition was growing worse. For me to exercise her neck was a 1 hour operation, exercising her arm was another 1 hour operation, then came her feet (30 minutes) Gravity feeding required 15 to 30 minutes to set up, while gravity feeding took me about 30 minutes to and hour (hour being better for her but she could tolerate 30 minute feeding. I also ended up with a pump for feeding but that took about 2 plus hours once it started running. To deviate from either gravity or pump feeding times I have stated would induce reflux in her. Don't ask me why - but it did.
I have to run. I find some other solutions I will post.
So, she found one she thought would work that would allow the elevation of her head (angle was adjustable as was neck sizing). Sound good? Nope! As I raised the chin angle to allow her to view what she might want to see, her chin would drop through the chin support, I got another one to specifically address this issue. These are not cheap running and cost between 70 to $200 or more.
Most say not to be used longer than 15 minutes. I found a product that I THINK can be used as an alternative or at least a complimenting device called Iron Neck which appears to allow the wearer to be able to turn their head but this device is used to build neck strength. It is attached to something as it appears to be like a hat without a top. The device has head bands to keep it attached to the head and the "hat band" appears to have only one wire attached to what is obviously a track allowing it to move to new positions. I think (1) it needs to have 3 attaching wires and have an upright stand of at least three upright poles (much like a medical tree) to allow wire attachments to be set at preferred height.
So instead up a device pushing up and the patients body and shoulders, the head can be suspended from above for a true (comfortable) holding position and still allowing a left -right head turn ability.
I have not called the retailers or manufacture as yet but I do plan on it. However, you are on the right track in that this device would cover the under chin - basically the patient could not be fully shaved using this device. I also have a neck brace I never fitted to my PALS, mainly because I did not want to hurt her and her condition was growing worse. For me to exercise her neck was a 1 hour operation, exercising her arm was another 1 hour operation, then came her feet (30 minutes) Gravity feeding required 15 to 30 minutes to set up, while gravity feeding took me about 30 minutes to and hour (hour being better for her but she could tolerate 30 minute feeding. I also ended up with a pump for feeding but that took about 2 plus hours once it started running. To deviate from either gravity or pump feeding times I have stated would induce reflux in her. Don't ask me why - but it did.
I have to run. I find some other solutions I will post.
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