The Danger Of Dysphagia

When Mealtime Becomes Scary

Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow, repeat. It turns out swallowing is a complicated process that demands a perfectly coordinated effort between your brain, nerves, and muscle system (If you have superficial siderosis, your inner alarm bell should be blasting).

The term dysphagia covers all swallowing problems but includes two groups. The first type involves a physical or structural problem in your body that impairs movement. The second type, which affects neurodegeneration, stems from issues with your neural and motor control center. Malfunctioning nerves responsible for the progression of dysphagia present a genuine danger to your well-being.

Staying Aware

Gary paid a visit to the speech-swallow clinic during our last trip to Little Rock for a Fiberoptic Endoscopic Evaluation of Swallowing (FEES). He occasionally has episodes of coughing or choking with both liquids and solids, a 15-year history of GERD, suffers annual bouts of pneumonia, and one episode of pleurisy with pulmonary infiltrates.

The Test Procedure

Given his diagnosis of superficial siderosis, his neurology team felt it was time to get a baseline test so the speech-language pathology clinic could follow his case in the event symptoms progress. A FEES evaluation only provides information on the oral and pharyngeal phases. You will need a different type of test to evaluate esophageal problems.

Gary’s speech-language pathologist applied lidocaine with a swab to the inside of one nostril. Next, the endoscope tube was lubricated and passed through his nose and nasal cavity. A monitor displayed the results of several swallow tests. The first was drinking milk. Next, he swallowed applesauce tinted with blue dye. He then chewed and swallowed a cookie and finished up with a cookie and milk combination—liquid, puree, and solids.

The Mechanics Of Swallowing

There are three distinct (oral, pharyngeal, and esophageal) phases in moving your food from your mouth to your stomach.  A specific set of motor and cranial sensory nerves controls each step.

parts of the oropharynx


When you finish chewing, the nerves that control the muscles of your tongue and throat will begin to move everything to the upper back part of your throat (oropharynx). Next, as your soft palate elevates to block anything from entering your nose, your tongue and pharyngeal muscles continue to move food into the lower pharynx (throat).


When food reaches the pharynx, your sensory nerves take control of the involuntary phase of swallowing. The swallowing reflex automatically moves everything towards your esophagus. During this phase, the most critical malfunction is if your epiglottis doesn’t move to block your larynx off. We’re all familiar with something going down the “wrong pipe” if we accidentally take a breath during a swallow.


Food or liquids move into the esophagus and continue toward the stomach from a combination of muscle contractions and two esophagus sphincter muscles. The upper sphincter closes to stop food from going back up into your mouth. The lower sphincter closes to prevent food from leaving the stomach.

Signs Of Trouble Ahead

Early symptoms may be highly variable and unpredictable as nerve degeneration, and motility problems affect the muscles. Because Gary is in the very early stage of dysphagia, his main concern is coordinating the muscles of his tongue and mouth to complete a swallow.

Symptoms you should be aware of include:

  • Difficulty in moving food to the rear of the throat
  • Feeling that food is stuck
  • Coughing or choking when swallowing
  • Drooling
  • Solids or liquid backing up through the nose

Your epiglottis must protect your lungs from particles of food or liquids; if particles infiltrate the lungs, tissue irritation can lead to severe infection. Lung infections caused by problems with your swallowing reflex are known as aspiration pneumonia.

Swallow Strategies

The speech-language pathologist gave us a list of “Swallow Strategies” to help avoid problems while eating.

  1. Add sauces or gravy to solid foods
  2. Cut food into small bite-sized pieces
  3. Always sit up when eating and drinking
  4. Take small bites or sips, one at a time and swallow
  5. Eat very slowly
  6. Take a sip of liquid after every bite of solids
  7. Place medications into applesauce, yogurt or pudding
  8. Remain sitting upright for 30 minutes after eating

Gary is scheduled to return to the speech-swallow clinic in six months for a follow-up and an updated FEES evaluation test.

Source: John McClellan VAMC Swallow|Speech Clinic Little Rock AR.
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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, Livingwithss.com became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor livingwithss.com,


  1. Update Feb 2020. By August 2018 an endoscopic examination had failed as the gastroenterologists could not force a standard adult sized endoscope into my upper oesophagal sphincter. A child sized endoscope was able to enter the upper sphincter muscle and the lower sphincter muscle. The result being my swallowing problem was confirmed as extending throughout my oesophagus as none of the muscles in my oesophagus functioned automatically as they should when I attempt to initiate swallowing. However the 8 biopsy samples found no cancer, so far! The next stage was a Dynamic Swallow X-Ray while Speech & Language Therapists fed me various foods mixed by barium. That test conformed my slight or developing swallowing problem extended from my lips through my mouth and throat and down the length of my oesophagus. That test by S&LT was done in Nov 2018 during an initial planned 2 day admission to UCLH Queens Square London for a monitoring MRI scan, Hearing, Balance and Neurophysiology tests to compere with those done in Nov 2016. The two day admission was arranged following UCLH taking over my continuing neurological care in Jan 2018 was extended to a full week as more SS related problems were found. Monthly visits for consultations, tests and procedures through 2018 and into 2019 followed. When I suggested that pressure from my bowels against my bladder prompted me to insert another suppository to help clear my bowels, the head of Neuro-Urology for UCLH agreed that was possible. As my Prostate gland had been removed in 2012. A referral to Neuro-Gastroenterology resulted in an Anal-rectal neurophysiology test. The functioning of the muscles within my bowels, pelvic floor and anal sphincter muscles were checked. The muscles in the two anal sphincter muscles and my Pelvic floor were found to be very powerful. However the muscles in my bowels did not function automatically as they should just like in my oesophagus. More worryingly when the tests simulated my bowels filling to capacity by inflating a ballon, even when my Bowles were inflated to beyond their normal capacity my brain received no signals to indicate my bowels required emptying. The result being my brain did not send signals to the inner anal sphincter muscle instructing it to open. Hence I was unable to voluntarily open the outer anal sphincter when I was ready to do so. Explaining my need to use suppositories since 2012 and the increasing need to use additional suppositories when my bladder incontinence increased to unacceptable levels by 2018. In Jul 2019 a Neuro-Urologist said the next tests of my Entric Nervous system had been approved and authorised but a date remained to be set. In August 2019 the UCLH Neurologist confirmed that the Multi-Disciplinary Team had decided that treatment with Ferriprox was appropriate in my case despite my not having a constant or even a regular bleed following the dural defect which had resulted in the deposits of iron on my brain between 2009 and 2012 having been located and repaired by the German NHS in Jan 2012. On 19 Nov 2019 a Haematologist in UCLH agreed to prescribe Ferriprox. So I returned home to Perth, Scotland with the first 100 day supply of Ferriprox at 3 X 500mg pills per day, 7 days a week. So far there have been no problems due to taking Ferriprox and possibly some slight improvement. The only problem has been obtaining the weekly blood tests as local doctors disputed the number and frequency of tests specified by UCLH. Strange as those local GPs and neurologists still claim to know nothing about SS as they did in 2016. However those objections over the specified blood tests seem to have been resolved for the present and the results so far have been. Apart from some marginal highs and low for some important tests. I now have letters of appointment for further visits to UCLH London for Mar, Aug, and Nov 2020. With more to come I believe. Hopefully the muscle problems from my lips, through my mouth, throat and oesophagus through my digestive system and bowels will NOT eventually extend to the two anal sphincter muscles making me double incontinent. One more incentive to accept the 2 in 100 chance of serious side effects due to treatment with Ferriprox against the 100 out of 100 probability of continuing symptoms such as double incontinence due to the relentlessly progressive nature of SS. What a happy thought to end on. Hopefully Feriprox will work for me. At the very least as a patient without a continuing or regular bleed, initial classified as MILD SS by UCLH in 2016 and confirmed by Dr Levy when he review the 2016 MRI images produced by UCLH due to small deposits of iron on my CNS, Ferriprox will hopefully be able to remove those small iron deposits quickly. So proving the efficacy of treatment with Ferriprox. It will then remain to see if removal of the iron deposits stops or even results in the reversal of my SS associated symptoms.

  2. Interesting, I have had increasing problems swallowing over the past year and it is becoming more of a problem. The initial symptoms was clearing my throat when eating, which became more frequent and noisy. Coughing food back into my mouth occurred more frequently and my doctor prescribed Gaviscon Advanced to take after food and before going to bed, to prevent reflux, though I was not aware that I had reflux. The Gavicon helped but the problem swallowing continued, nothing drastic just a nuisance. I had before then been diagnosed as having mild SS. My GP and the local Consultant Neurologist who had referred me from NHS Tayside, Scotland to UCLH NNC London NHS England both said they were surprised and shocked by the unexpected diagnosis of SS, which they knew nothing about. The initial diagnosis recommended at least annual monitoring by MRI, Balance and Hearing Tests but as nothin had been done more than 12 months later, I requested copies of my medical files and the MRI scan form UCLH NNC. I had been aware that a Neurophyisiologist who had tested my facial muscles in 2015 had verbally reported strange signals from my brain when she tested my upper facial nerves but I had not been allowed access to her report. That report was however the main driver for the second referral to UCLH NNC as a brain scan had found no significant difference with previous brain scans. The initial visit to London resulted in two further 1000 mile round trips for what was described as a very special MRI scan and the second for Neurophyisiology and hearing/brain tests. The medical files received from UCLH NNC included the Neurophysiology Test done in Dundee in 2015 and the Neurophysiology Tests done in UCLH NNC in 2016. Though there had been no mention of the Neurophysiology tests results I was interested to note that they were headed ABNORMAL The most significant results to me being the reference to problems with my 7 th cranial nerve. My research indicated that many of the symptoms I have suffered over recent years can be attributed to the problems with my 7 Cranial nerve. Indeed in 2015, I had asked for tests to determine the cause of both my increasing deafness in my left ear and STRANGE SENSATIONS down the left side of my face – hence the initial Neurophysiology Tests done in Dundee. It appeared very significant to me that apart from dry eyes, dry mouth and sinus problems, problems with the 7 Cranial Nerve controls affects eating and SWOLLOWING as that nerve enervates the muscles in the throat AND the 7 Cranial Nerve affects the smallest muscle in the human body which controls hearing AMPLITUDE! I discussed this with my GP who still claimed to have no knowledge of SS, but suggested a referral to a specialist to eliminate throat CANCER! Hence today at o9.00 I will have a Barium Swollow Test. Hopefully I don’t have throat cancer and the problem is due to the previously diagnosed mild SS. And hopefully the AT LEAST ANNUAL monitoring MRI, hearing, balance tests AND FURTHER NEURPHYSIOLOGY Tests will be done some 15 or more months following the initial diagnosis of SS. And perhaps I will the prescribed ferriprox.

    1. Morris, I certainly second your hope the test doesn’t find cancer! This may be the one instance where a determination this is a superficial siderosis symptom is more preferable. I found during my research that a barium swallow test is one of a few they can do if they suspect esophageal dysphagia. There is some information regarding the facial nerve (VII) and dysphagia at Oxford Medicine
      I hope your test is successful in determining a cause of your problem. I’ll be waiting with great interest for your results. Good Luck!

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