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horseshadowrider
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swallowing issues- dysphagia
Do any of you have problems with swallowing? I know this is a red flag sx of brainstem compression and Dr. B told me several times I have this. It is getting worse and that scares me. It scares me because I'm not sure DR. B will ever want to do a fusion on me because of my osteopenia. And even if he did, well...I have faith and strength in the Lord, but there are those natural concerns that the fusion will fail. And if the swallowing/breathing stuff keeps getting worse and worse, I "fear" that a halo might be in my future. I know it's all IFs and more IFs...
When I swallow (most of the time), it goes down slow, very slow. If it goes down. And the odd thing is, it's like the back of my mouth/throat is numb or something because I sometimes have food there that hasn't gone down, and I don't know. tonight, without a thought, it came back into my mouth and that felt SO strange. Right now, I have applesauce, even, that isn't going down. I can also have water not go down.
The other interesting thing is, I'm not choking. There is no reflex or feeling that I'm choking with this food not going down, or doing down slow. I realise it's there, and I know eventually it will make it's way down.
Does anyone else reading this have this? Is this, as I suspect, a situation where the swallowing mechanism just doesn't work? The muscles that move food down the esophagus are lax or dysfunctional?
Anyway, I just felt a need to share this, this symptom that seems to be really intensifying. Thank you Jesus that I will see Dr. B face to face on Friday and can ask him about this.
Oh, please help me pray that I do see DR. B. One never really knows (as you TCI pts know) if you will or not b/c he could be called into surgery or whatever. So far, I've been very blessed to always see him. I feel a strong need to see HIM specifically b/c I am not the usual TCI patient with my Jefferson frx and atlanto occipital dislocation.
thanks for listening. Love you all
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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4/29/2008, 2:10 am
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zoe ashcraft
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Re: swallowing issues- dysphagia
i will pray virginia*about your seeing Dr. B.
you're probably on your way already-? or soon!
as to swallowing yes, i have this problem- worse at some times than others.
i have always, always used liquid when i eat and i guess that's part of the reason why- it helps some, little sips.
also, (you probably know this) if you rock your head forward a bit when you swallow it helps.
i also find that chewing ice helps - it seems like it takes down swelling inside - but it's not a real good habit. maybe sucking on it?
i know it's kind of scary at times.
tell me- do you (hate to say it) but ever spit up- or froth or drool at the mouth- or gag on your spit? i don't know how it all relates exactly or doesn't.
anyway, i gotta jam- fam- needs me- let's talk more about it when you get back-
love you,
zoe
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5/1/2008, 1:02 am
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cash71
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Re: swallowing issues- dysphagia
I have swallowing issues too but I would say they are very mild. I mostly just have a weird sensation and "clunking" sound when I swallow.
I am often awakened by it and it seems to be the worst when I lay on my back. I don't normally sleep like that but I guess sometimes during the night i turn in my sleep onto my back and then I am awakened by the swallowing thing. Obviously something presses into my brainstem when I am on my back.
So far I have not had any issues in swallowing food or liquids.
You are in my prayers that your issues don't get any worse.
hugs,
Caroline
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5/7/2008, 12:36 pm
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horseshadowrider
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Re: swallowing issues- dysphagia
Thank you, Caroline. Sadly, the swallowing thing is one of my sx which worsens as time goes on. All day today, I felt my food unable to really go down (and I should say the last bite of my food, it's not like a whole hamburger builds up at the top of my esophagus, ha!)...and the feeling that whatever was there really wanted to come back out. Odd...but just another one of those lovely things we all deal with.
people say, how can you laugh and smile if you feel so badly and have these yucky things going on?
Well, you live with it every day and you start grabbing those moments to smile, am I right?
C, I'm so glad you are here and I know you have many challenges, particularly with the Canadian health system (or lack thereof)...I encourage everyone to check out your blog listed in the forum with blog addies.
Sorry you have this stuff too and I pray none of it progresses. You have enough on your plate!
loveya
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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5/7/2008, 7:26 pm
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Snoozie1
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Re: swallowing issues- dysphagia
Caroline, when you say a "clunking" sound when you swallow, is that audible to others around you? The reason I ask is because my husband has made comments about how loud I swallow since the accident.
If I try to swallow quieter I choke so I just tell him to deal with it. This only happens when drinking, not with eating.I do do have troubles swallowing now and then but thankfully not all the time. Usually when muscles in my neck/shoulder area are sorer than usual.
is sorer a word LOL  ...Sue
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5/7/2008, 7:36 pm
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horseshadowrider
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 Re: swallowing issues- dysphagia
"Deal with it," I love it Sue!
Made my day!
sorry....just had to smile!
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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5/7/2008, 7:48 pm
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cash71
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Re: swallowing issues- dysphagia
Hey Sue,
No I would say it's a pretty quiet clunking. Feels kinda like I have a lump there that I need to swallow but of course I never can. Somedays this lump makes me swallow over and over to try and ease it and I even progress to gagging which is truly unpleasant. Almost all of the time though it is when I am laying on my back either in bed or on the couch so I try and avoid this position.
If I had the choice between loud swallowing or choking I would also choose being loud!
thanks for sharing your experience with it too.
Caroline
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5/8/2008, 1:19 am
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bornagin4ever
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Re: swallowing issues- dysphagia
Virginia,
I'm so sorry it took me so long to see your post. I've been sick all week. Out of the loop.
I feel bad you probably are already in NY as I type.
I can certainly understand your concerns. Hopefully you'll see Dr.B, and he'll have some answers that will help put your mind at ease.
I have had similar swallowing problems. They come in spurts. Thankfully they don't last long.
One thing I noticed a lot after my last surgery was how uncoordinated my tongue was.
When I'd eat I couldn't get my tongue to move the way I wanted it to to get the food to move to the back of my throat.
Or I couldn't get my tongue to move at all.
I know how troubling this can all be. I will be praying for you.
Hope to hear from you soon that all is well.
Love in Christ,
Regina
ACM1 11mm SM C6-T1
Decompressed Oct. 15, 2001
TC Surgery @ TCI Oct. 4, 2007
PFD Revision/Fusion @ TCI Dec. 5, 2007
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5/9/2008, 10:32 pm
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horseshadowrider
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Re: swallowing issues- dysphagia
Hi Regina, thanks for thinking of me! I have been a week home from TCI. I reported on it elsewhere here on this forum, I think. If you can't find it, let me know and I'll give you the skinny!
I was reading something last night about swallowing problems. The tongue and mastication process are controlled by the Trigeminal Nerve...the swallowing process from the pharynx on down are controlled by the glossopharyngeal nerve. That is the problems I have and in fact, my first doctor after my injury dx'd me with glosso. nerve damage. That is one of the central nerves.
If you want the link, let me know.
I'm soooo sorry you've been sick! You have my prayers, sister!
I've been pretty sick, too. Right now feeling that burning behind the head, so guess I'll get off the computer, even tho I just got on.
love you!
Virginia
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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5/9/2008, 11:52 pm
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bornagin4ever
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Re: swallowing issues- dysphagia
Sure, Virginia, I'd love to read the link you found about swallowing.
I saw a speech therapist before my last two surgeries who had some good practical hints as well as excercises to help.
I haven't looked at the info for a while. If you want that info I'd be glad to pass it on.
Gentle Hugs,
Regina
ACM1 11mm SM C6-T1
Decompressed Oct. 15, 2001
TC Surgery @ TCI Oct. 4, 2007
PFD Revision/Fusion @ TCI Dec. 5, 2007
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5/14/2008, 9:54 am
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