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KimT

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After a very uncomfortable and painful dental appointment to replace a 40-year old crown today, I decided I need to write another ALS information sheet for dentists. The ALS Awareness Paper would probably not get read and it doesn't really address dentistry and ALS.

When I went for a cleaning last month the X-rays showed I had cavities under two crowns. They wanted to replace them both at once but I explained I couldn't keep my mouth open that long and explained why (some of it has to to with an auto injury and some of it is ALS.) As I reclined in the chair I reminded them that I had a strong gag reflex. The dentist was very careful, telling me exactly what she was doing and exactly how long each thing she did would take. The dental assistant was another story. She shoved so much cotton in my mouth at one time I really thought some of it would go down my throat. I told her I had to spit frequently and the tube she was using wasn't doing it for me. At one point she said, "it's only water, it won't hurt you." When the dentist came back in she made her change the tube, remove most of the cotton and let me spit into a paper towel.

I can't tolerate stimulants so I have to substitute some other numbing agent for novocaine. It only lasts about 20 minutes. The "simple" procedure of removing one crown and putting a temporary crown on took an hour and a half.

So when I return in two weeks I'll have a handout on treating ALS patients who can still tolerate dentistry.

Anyone who wants to make suggestions, please just add them to this thread and I'll compile them and incorporate them into my handout.

Maybe it can be a complete "Dental Health and ALS" sheet. I visited a friend a couple of weeks ago. She has bulbar onset and is on Trilogy about 20 hours a day. She can still walk using her walker and told me the hardest thing for her is brushing her teeth. She insists that her teeth be brushed and flossed twice daily.

Please give me some feedback on what I should include in the handout.

Thanks.
 

wishmobbing

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Great idea! Looking forward to your finished handout.
 

KimT

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I meant to post this in the general discussion so it would get more views. Can one of the moderators move it please?
 

ShiftKicker

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What an excellent idea. Thank you!

Best thing I ever encountered while getting dental treatment with a spastic jaw was just a simple rubber block to keep my mouth wedged open- not only preventing me from biting down, but also reducing jaw fatigue because I didn't have to work to keep my mouth open. The dentist had a few different sizes and hardness. We found that the hardest rubber worked best, and to use one that didn't hold my jaw all the way open- only to about 75%. Anything wider than that triggered clonus and all sorts of salivation.

I think there are a few other discussions about dental stuff hidden here and there in the forum. There was a good one in the PLS subforum a couple of years ago. Mostly about the concerns people have about specific things, but there are a couple of solutions too.

https://www.alsforums.com/forum/general-discussion-about-pls/29669-dentist-visit.html
 

swalker

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Kim, Thanks for your willingness to put this together. Here are a few notes for you.

To keep from having to lean me back so far, my dental hygienist stood up while she cleaned my teeth. Unfortunately, she just retired and I am going to figure out how to work with a new one:(.

I am not so much worried about gagging as I am worried about aspirating. I make sure the dentist knows my issues and takes care to reduce the risk of aspiration.

My dentist is aware that my reflexes are a bit unpredictable.

Dentists usually tell you to raise a hand if you need a break. It is important to work out a signal the dentist will understand and the patient is capable of performing.

My dentist gives me plenty of breaks with ample opportunity to empty my mouth. They do an excellent job of suctioning stuff out.

When taking xrays, my dentist holds the film in my mouth, because I am unable to reliably position it by biting on the holder.

I try to make my appointment in the morning so there is less chance the dental staff is running behind schedule. They need to take extra time with me, which is hard to do when they are running behind.

Steve
 

affected

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Definitely the hard rubber block/wedge is important for all the reasons shiftkicker gives - and instruct to wait a minute or so after inserting to ensure that the first round of salivation from the stimulation of the block going in has settled down.
 

KimT

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All this time I thought the vestibular disorder and dislocated jaw would be my greatest dental challenges. Tillie & Fiona, she actually did offer me a block but it hurts more to force my jaw to stay open than it does to constantly open and close. I will definitely include the block in the handout along with the suggestion to let it settle down.

Today my neck and back are on fire. I also have a tension headache. All this comes from struggling to make sure I wasn't going to choke or gag. I think the only thing that kept me in that chair was the Valium I took an hour before. It seems like my threshold for pain has hit rock bottom. Things that never hurt before feel like they're driving nails into my body.

None of it stopped me from eating when I got home. :grin::grin::grin:
 

affected

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maybe the block was too big Kim - if it is big enough to hold your mouth right open it's too big.

then of course, every PALS is just a bit different .... xxx
 

KimT

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I've had this issue for nearly 20 years ever since I dislocated my jaw in a car accident. Before ALS, I still had to open and close frequently. This disease just added more complications to the process. I also have a pinched nerve at c5/c6 and I get cervicogenic vertigo (misdiagnosed as Meniere's for years because both vestibular nerves don't work right) so I can't fully recline unless I change positions frequently.

One thing I'm adding to this and other information sheets I plan on writing (one for physical therapists is my next project), is that PALS have other health issues besides ALS and these need to be taken into consideration as well.

Tillie, I don't seem to have any problems eating, for now. I'm having a hard time going back to paleo but I felt so much better off dairy and grain. I'm down to just yogurt and an occasional gluten-free pizza but getting ready to go back to 100% paleo. I'll know for sure if it works because I've been off it since Christmas. I have been 100% gluten free for nearly three years.
 

Kristina1

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this is a great idea, i need something like this
 

wishmobbing

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The paper or the pizza? Or both?
 
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