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jrtriggs

Member
Joined
Apr 27, 2015
Messages
15
Reason
PALS
Diagnosis
09/2014
Country
US
State
Pa
City
Wexford
I have bulbar ALS and have decided to get a tracheostomy next week. Now, my head hangs down from weak neck muscles. I have tried a couple neck braces, but never found one that didn't hurt my chin. Once I get the trach, I have been told that I can't allow my head to hang down. I'm looking for the best neck brace that I can use with the trach. Any brand suggestions for a good neck brace?
 
Are you still walking, using a chair, what? Which braces have you tried? Have you ever measured your neck height to collarbone notch? Many collars and braces work best sized correctly.
 
I am walking with the aid of a walker, can't walk far so I'm using a mobile electric chair. We have ordered a larger chair which has a head brace/rest built in. The only brace I have used was a soft foam neck brace. I was never measured for a different type. I hope I am doing the right thing getting the trach.
 
Do you attend a clinic? They should have an OT that can measure you and work out the best brace for you.
 
The soft foam collars are kind of fundamentally different than the more structured braces. You may need an open brace for your trach though the new chair, presumably with tilt and a good head rest, may address your support issues. If not, and with your current time when you use a walker, the best answer depends on your degree of weakness and the affected muscles. The Neck Solutions site shows most of the major options and sizing. Once your new wheelchair is in, you might also want to look into extra shoulder or chest support if needed.

But when you say you hope you are doing the right thing with a trach, are you talking more generally? It's not something to do without a lot of thought, planning and preferably multiple professionals' input. Post more about your decision process, and those experienced can weigh in, if you like.
 
Hi jrtriggs, my husband is trached and vented and has recently been unable to hold his head up so a neck brace is something we are looking for also. I read an old post that mentioned the Headmaster and the Shane brace. They both look like they would work with a trach but I know very little about neck braces, maybe someone else here might know for sure.
 
My husband also has bulbar ALS, and has been unable to find a comfortable neck brace. The ALS clinic wrote us a referral so that he could have his measurements taken for a more comfortable fit.
Definitely have your husband fitted.
Good luck in your search.
 
We tried both (though not for a trach). The Headmaster might work for some but it's an anatomy thing. Shane's brace was just too flimsy--- pieces came out of place repeatedly and I was not up for gluing them. We also tried the Philly, Aspen and others I don't recall, that would all be worth trying depending on the person. Settled on a medium density soft collar but that would not work for a trach unless you took scissors to it.
 
My partner also has bulbar ALS. We have tried four different braces, including the Headmaster, but none have worked for him. It all comes down to discomfort at the chin or too much pressure on the chest, which makes it even harder to breathe.

When he sits down to watch TV on the sofa, I place a rolled up towel behind his neck and that gives him support and comfort.
 
Have you tried a soft collar that is sold in different neck heights? That can make all the difference. Big guys don't necessarily have tall necks, etc.
 
I don't think that people should have to try a heap of different braces and work it out for themselves - surely this is what an OT should be doing to ensure you get the right support with comfort. A good OT still might not get the perfect brace first go, but they should be able to check you over, try different types/sizes of braces on you and then advise which will best suit your individual needs.

It might be one thing for someone with previous medical confidence to do this, but for most people I don't think so. Also it could get expensive if people have to keep buying and testing out different braces.
 
Hi jr. My husband has a trach and uses the Vista neck collar by Aspen. It has the opening for the trach. It was ordered for him by the OT when he was in the hospital rehab unit after a bad fall.

Sharon
 
Hi jrtiggs

I have used both soft and rigid neck braces/collars to help manage progress neck weakness. Eventually they all presented a common problem. As my head fell forward and down I experienced an ever-increasing pressure on my chin as it leaned on the top of the collar or brace. Eventually I stopped using them because of growing discomfort. I am now using the Savant head control brace fitted to my power chair and this proved very effective. With this system my head is held erect by a band around my forehead, therefore there is no pressure on my chin. I have been using this system for about a year and I can eat and speak without a problem while my head is held in position. Check out the website below to see a demonstration.

https://www.symmetric-designs.com/savant-head-positioning

My ALS Center in conjunction with a wheelchair specialist ordered it and Medicare covered it.

Best wishes

Eliot
 
I agree that a wheelchair-compatible solution is best for ongoing wheelchair use, Eliot. I think many of our suggestions were for the here and now where J is still part-time in a walker. Ideally, the head rest setup is optimized as the chair is ordered.

And Tillie, while it would be nice to have an OT with inventory such as you describe for trial, in the States, that is not always the case. But a collar such as I mentioned is <$20 and we used it only for transfers and outings. For those who need full-time support even in or apart from wheelchair tilt, something like the Savant is clearly preferable.
 
With respect I would encourage everyone to get advice through their clinic or doctor if not an OT. No place, situation or system is perfect, but that doesn't mean my post here has to be pointed out as wrong because it is not.

That still doesn't mean people have to trial and error on equipment and several different $20 items can become burdensome for the finances of some people. Some PALS/CALS I know are having many financial difficulties so I don't like to presume at all that they can afford to just buy and try without even getting advice from someone looking at them and their situation.
 
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