28 Years OF Mystery Swallowing Problem and its Getting Worse!

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iamnotaheadcase
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/5/2014 3:51 AM (GMT -6)   
I bet no one's heard of this.

I'm 51 and very worried about trying to remain alive at this point since as of early July 2014 I can no longer swallow soft mashed potato down my very tight and half functioning throat.I have been eating mash potato for days now,other foods I can't eat. I live on Ensure,Boost and a protein shake.I am also so thirsty that it has resulted in me going to emerge.The odd time I can barely get a small thin cookie down if I chew it into powder.My throat and swallowing is getting tighter every few weeks,like there are ghostly hands around my throat.I also have had trouble clearing phlegm from my throat for years and get very congested.I also get stinging pain throughout my throat and in fact often down my arms to my fingers,feet or elsewhere that last 5 seconds to about 2 -3 mins and it hurts like hell. I was diagnosed last month with Syringomyelia but they don't think it's Chiari Malformation (the more severe version of this illness that affects swallowing ) or it may have show in my MRI. So far no answers.......

I started like this.

I was 23 working at a temp warehouse job that I liked.It was summer of 1986 and I was on lunch break sitting in my brand new Chevy truck in a great mood.Half way through my sandwich I felt and heard this loud snapping noise in my head and throat.I was shocked when a moment later I realized the left side of my throat was immensely stiff and I could hardly get the rest of my sandwich down.I left my lunch, tried deep breathing and to try relax.I did go back inside to work but after 2 hours of anxiety I asked to go home.
I went to my family ENT who said all appeared normal except for slightly inflamed tonsils. I managed to use all my willpower to calm myself and after a few weeks went back to work and learned to live with this.

After 2 years of repeated throat infections I was bedridden with a temp of 102 degrees and tonsillitis ,also my entire throat was now stiff,sore and not working too well.My ENT doc agreed they needed to be removed so I had the surgery. All went well except on waking when I realized I had tons of phlegm logged in my airway,thankfully the very attentive nurse helped get it out.I recovered very well overall and for a week my stiffness and swallowing trouble was GONE,I was elated!

A week later at a friend's home I was given alcohol and after a few sips 'WHAM' it all came right back in an instant and has not left or eased off since. Suffice to say I was prescribed Ativan for a number of years before my memory suffered and was then given Clonazepam which I take each night before bed.

Earlier this year I had trouble walking and had to leave another warehouse job as I was diagnosed with severe Sciatica,so was couch bound from Feb to June,when I started to walk quite well.I have never appreciated walking so much in my life!

I went for 2 MRI's since March and last week was diagnosed with "Syringomyelia' pockets of fluid in my spine in 3 places, 1 just below my neck and 2 near my tailbone. I was told it is not life threatening,but also read that it can press on nerves, etc and cause muscle weakness and wasting away of tissue.

In the last month my swallowing has become smaller,stiffer and I practically get everything stuck in my throat though I chew my food into nothing. I cannot swallow anything bigger than an Aspirin and chew vitamins and other meds.I was enjoying some soft mashed potato earlier today ,only to not be able to swallow them later in the evening.

I am popping Clonazepam in an effort to remain calm....Am I dying here? I cannot rationalize what is happening to me,it's like a real life nightmare!

I am suffice to say petrified at this point and reluctant to go to emerge......unless I collapse....
Any ideas or input greatly appreciated,

Thanks you so much for reading

Blessings

'iamnotanutcase'

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 9/5/2014 8:06 AM (GMT -6)   
Hi,

I am so sorry to hear of your suffering. It does sound like you have LPR - silent reflux which is acid in your throat which will then cause crycopharyngeal spasm or dysfunction. This causes upper dysphagia which I have myself from this and as you know it's deeply unpleasant.

I can recommend upper dilatation's they are painful but they do help, getting rid of the acid in your throat however is the answer.

There are a couple of videos on youtube which describe crycopharyngeal spasm and dysfunction and may help you.

I would also suggest getting a PH study done which will show if acid is coming into your throat.

Hope that this helps

Pink

SharonZ
Veteran Member


Date Joined Mar 2014
Total Posts : 1397
   Posted 9/5/2014 10:24 AM (GMT -6)   
Have you been to see a gastro doctor?
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