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Unknown Swallowing Disorder For 28 Years

Phil ReynoldsPPhil Reynolds Posts: 5
edited 07/21/2014 - 8:16 PM in Neck Pain: Cervical
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 yesterday 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 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




  • LizLiz Posts: 7,832
    edited 07/21/2014 - 11:13 PM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Phillip, I assume you have seen a neurologist or neurosurgeon? I am by no means either one, but it would be worth checking into Chiari Malformation. Swallowing disorders and especially syringomyelia are symptoms. Good luck.
  • Phil ReynoldsPPhil Reynolds Posts: 5
    edited 07/23/2014 - 9:28 PM
    Hi ab1988 I have not yet seen an NS ,I did years back and they found nothing as they never had MRI technology back then and SM doesn't show in regular Xrays. So I'm off to a Physiatrist in a few weeks for nerve type testing......

    Thank you and Liz above for reading and replying ,I truly appreciate it a lot and will look into your suggestions and links

    Blessings :)
  • Phil,

    I cannot say what is causing your problem, but it sounds similar to what a family member went through. His was the result of radiation therapy, which damaged his esophagus. After several years of his suffering, he came to visit us from his home country, and finally we found a doctor whose specialty is just swallowing disorders. He first had a swallowing eval done by ultrasound with a speech pathologist, then the problem was obvious, and often times the solution is obvious. He is doing great now and can swallow his pills. Such a center is likely to be able to find a cause for your issue. But you definitely need to see a neurosurgeon, regardless of the swallowing issue, to see what can be done for your spine.

    As an aside, I too had my tonsils removed as a young adult due to chronic infection. I have a range of autoimmune issues and inflammation in my body and my tonsils were chronically swollen, huge. I have cervical disc herniations at c6 and c7 which make speaking loudly sometimes painful. I also had L5S1 herniation at age 15 and after bed rest managed to recover mostly.

    Cysts are very possibly not isolated to your spine alone. See a neurosurgeon who has treated syringomyelia and a center for swallowing disorders. I personally would avoid heavy lifting until I knew more if I was in your situation.
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