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rose

Extremely helpful member
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DX MND
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I tried to create a new thread last week, asking if anyone has tried the headmaster, I don't know, maybe because I included a link, for whatever reason it never came out of waiting for moderator approval. So..... lets try it again, without the picture link.

At clinic last week, they wanted me to get the headmaster due to problems with weakness and pain involving my neck. The rep from the vendor that supplies orthotics, wheelchairs, etc, was there, and he came in with a headmaster, fit me with it, said with Medicare it would probably cost me about $20. So, it was all good. I liked it, it seems lightweight and comfortable. It rests farther down below the clavicle than the brace does, and the back has velcro and some padding. But, the brace is still about half the price when I searched online)

I had put it back in its plastic bag, and we were on our way out of the clinic. In fact, if Don hadn't had to use the mens room, we'd have already been gone. The guy comes running after us, says he called Medicare, and as I had not yet met my deductible this year, it was going to be $200+! I could not hand it back to him fast enough! good grief ~ from 20 to over 200 in a matter of minutes.:twisted:

We looked online, found a couple of suppliers. There seems to be quite a variance in what the going price is. Sammons Preston was the most expensive (but I'd included a link to them in my earlier attempt at a thread, because they have the best pictures of it). Another vendor advertises it for about $104. SP is approximately another $25 on top of that.

I've searched, and all of the older threads I've found have been locked, and no one really responded with feedback from using it. So.... is there anybody out there? (just nod if you can hear me lol)
 
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Hi Rose,
I'm nodding! I can't give you any feedback on the brace you're asking about unfortunately but I did see your post about the difficulty in posting this thread. I don't know if you saw this post made it into the public domain? So just bumping it up to see if anyone else has an answer for you.
 
Oh good! I've gone public, I'm published! (basking in the limelight)

....now.... is anyone using this brand neck brace at present? The clinic director wants me to try to sleep with it, due to problems with breathing when my head twists my neck (yes, even with bipap) but, I can't imagine anymore equipment while I sleep. During the day when I'm tired, yes, I think the brace would help.

I was hoping to see if anyone has tried it, and how long they wear it at a time, etc. I'm also curious if anyone has used this brace. When they fitted me with it at clinic, they did something with Velcro fasteners on each side at side/back of neck, the guy said that once its fitted, only one side needs to be opened to put on, or take off. It was lightweight, and behind the neck has some padding.

It made me so sad when I was searching for information within the forum. Jay (Ratman) had it, but all I know is he said he liked it. Another thread started by Phil talks about it too. Just hate losing our family members here. I can assure everyone, that weak neck or no, I'm not anywhere near exiting this world, at least not from MND. (There's still the get hit by a truck, struck by lightening scenario).
 
Diane, when I was looking into cervical collars, I did read about the Headmaster here. It only helped "vertically"--kept the chin up! It didn't help if the head falls to the side as mine does. However, everyone spoke of how much they did like it.

I don't know if you've tried having a smaller pillow tucked under your head's pillow on the side where your head wants to go. That is now what Phil does for me, creating a bulge on the side I need to stay away from. He also usually puts a hand above the ear on my head and gently (he says--it feels otherwise to me!) presses my head toward the side it doesn't want to go, stopping when my head is straight up. I tend, at that point in the evening, to stay put. I cannot move my head other than left to center, but I don't move in bed at all, other than my hands.

I hope this is somehow useful for your situation.

Ann
 
Ann, I agree that it does not seem like the collar would help with my head falling to the side. And, even if it could, I don't think it would help me sleep lol. The suggestion for pillow placement is a good one. I try to wedge some into place to help, and in the past I'd tried a donut travel pillow, and kind of got away from doing that, not sure why. Getting the right size pillow seems to be the key.

But, for use during the day, that is what I'm most curious about as far as feedback from those who've used it.
 
Diane, I have seen people in our MND clinic wearing Headmaster collar, so I assume they were benefiting from using it during the day. Have not got personal experience with it, but have noticecd it mentioned often and always alongside positive reviews. Some day time wearer will chime in.
 
Hi Diane!

I have neck pain from what they tell me is muscle weakness. I have a headmaster collar. I haven't been able to wear it for more than an hour at a time. The pressure on my chin and clavicle becomes greater than my neck pain!

-Tom
 
Hi Rose,

We have the headmaster neck brace and it didn't work for my friend. His head falls to the side. He was recently fitted with an Aspen collaar which gives more support all the way around. He doesn't seem to mind wearing it and doesn't complain of any discomfort...although he doesn't wear it for hours either.

Good luck!

Kim
 
I used a Headmaster for quite a long time--over a year. Neck weakness was among my first symptoms. I usually wore it in my chair or while walking around (while I still could). It was comfortable when properly fitted by OT. I quit using it when I couldn't get it on by myself. I was still working at the time. It does help with head tilt if adjusted properly. YMMV
 
Thank you for all of your replies. I guess I'm not going to know if it will help me unless I just try it. The point of it being properly fitted is probably an important factor in how comfortable it is. My neck is weaker on the side, so I did look up the Aspen collar just now, but I don't think I could handle that much hardware up around my neck (although my viewpoint may change with time) What I liked about the Headmaster was how open and lightweight it is. But then, if it doesn't work... sigh...
 
I am in search of a good neck brace for Mom also. I am not buying another one unless we can try it first though. I've already wasted over $100.00.
 
Laura, I know what you mean. Since it's my entire spine that's shot, I now spend most of the day in bed, carefully aligned and supported that way. When I am up in the chair (for meals and also the morning), I'm able to sort of keep myself propped up--butt over on one side and arm resting on the other--my "last stand" so to speak. And my head is pulled toward center as soon as I'm in bed, by whoever is putting me down.
 
If you're in a wheelchair I would recommend forgetting about the neck brace and instead get a headrest called The Savant. If you search the web for savant headrest it shows up. I tried the headmaster and it hurt both my collar bones and my chin. If you're not in a wheelchair the headmaster is probably your best bet but in a chair I've found the Savant headrest to be much more comfortable.
 
Thanks Jeff, I am not in a wheelchair, and did order the brace the other day. I guess I'll have to find out on my own if its the answer. Oddly, one of the activities that I'm hoping it will help with is riding in the car, but the strain is with my head trying to go backwards. However, if I have something to rest my chin on, maybe it really will help.
 
Let us know, rose. I've been wondering if you'd been able to get it and if it helped
In a pinch--they do make a relatively lightweight c-collar that is adjustable--I used them when I was an EMT. Not nearly as stiff and bad as the Aspen for the patient.

depending on how weak your neck is--I was thinking about this the other day when I was thinking of you. What about one of those rounded car type pillows that would rest around your neck to help keep it steady? Of course, that would depend on how much strength your neck had--but it might make car trips much more comfortable for you. I used to use one any time I was a passenger on a long car trip due to the neck pain I live with daily. Having my head or neck jarred would send stabbing pain, and the pillow helped keep my neck still without anything pressing on my collar bones.

Of course, it wouldn't be a full-time solution for down the road....
 
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