Conditions who struggle to swallow

Other Conditions who struggle to swallow

There are many I have come across, here are just a few.

Oct 2023

Hello there,

My name is Amie and I work with Cerebral Palsy Guide, an organization dedicated to providing support for those affected by cerebral palsy, birth injuries, or other developmental disabilities. I came across and noticed your organization does an excellent job at providing childcare to your local community.

According to the NIH, 1 in 5 households care for a child with special needs such as Cerebral Palsy. Cerebral palsy is a developmental motor disability that affects movement and posture. As you can imagine, this disability causes tremendous stress on parents/caregivers.

To help support these families, we’ve created a page that highlights different resources available to these families.

Would you help us spread awareness by linking our website to yours ?


Amie Kroessig
Director of Advocacy

What is Spina Bifida

Children born unable to swallow can also have this condition

Watch this Lovely Video

Spina bifida is when a baby’s spine and spinal cord don’t develop properly in the womb, causing a gap in the spine. read more here click the link below. Spina bifida is a type of neural tube defect. The neural tube is the structure that eventually develops into the baby’s brain and spinal cord. In spina bifida, part of the neural tube doesn’t develop or close properly, leading to defects in the spinal cord and bones of the spine (vertebrae). here are several different types of spina bifida, including.

myelomeningocele – is the most severe type of spina bifida.

meningocele – is another serious type of spina bifida.

spina bifida occulta – is the most common and mildest type of spina bifida.

Spina Bifida Blog 2018

This is a New Blog from a Parent living with a child with this condition, the Lady has become a Friend and I kinda talked her into doing this, because I have seen a few negative posts on you-tube I felt this lady could give her account better.





spina bifida from a parents point of view Mothers Blog

When Your Baby Won’t Eat

(Whatever causes the initial interruption, the results seem to be the same: a child who no longer connects to her own internal sense of hunger and satiety, but instead relies on external cues to decide whether and how much to eat. In this way, successful eating requires both our most primal instinct and the right set of learned behaviors. When eating goes wrong, whether it’s a life-threatening aversion like Violet’s or a common case of pickiness, parents and medical professionals find themselves at a version of the same crossroads: Do you try to correct the behaviour — training a child to eat well, Pavlov-style — or do you try to rediscover that primal urge and trust her to take it from there? It’s a divisive question among the doctors and therapists who work with children like Violet, as well as a debate unfolding, consciously or not, around most kitchen tables in the country.)


Swallowing Problems Diagnosed in Parkinson’s Disease

If you have Parkinson’s disease and are having trouble swallowing, contact your doctor. He or she will recommend a speech pathologist to carefully examine your swallowing abilities and evaluate your aspiration risk. A swallowing study using foods and liquids of varying consistency. The way you sit and the type of food you eat can influence your ability to swallow. Sit upright at a 90-degree angle, tilt your head slightly forward, remain sitting or standing upright for 15-20 minutes after eating a meal. This website is for people who struggle to swallow from birth, there is a good chance the info on here can help you, plus dysphagia can be a complication of Parkinson’s disease.

 Hard to swallow: dysphagia in Parkinson’s disease. swallowing changes occur from the earliest stages of Parkinson’s disease (PD), even in cases asymptomatic for dysphagia. Little empirical evidence exists concerning the individual’s own perception of changes, the impact these have on their life and coping strategies to deal with them. We hope what you read here on this website might help you in some way.

The term dysphagia, a Greek word that means disordered eating, typically refers to difficulty in eating as a result of disruption in the swallowing process.

What is dysphagia?

People with dysphagia have difficulty swallowing and may even experience pain while swallowing (odynophagia). Some people may be completely unable to swallow or may have trouble safely swallowing liquids, foods, or saliva. When that happens, eating becomes a challenge. Often, dysphagia makes it difficult to take in enough calories and fluids to nourish the body and can lead to additional serious medical problems.

What research is being done on dysphagia?

Scientists are conducting research that will improve the ability of physicians and speech-language pathologists to evaluate and treat swallowing disorders. Every aspect of the swallowing process is being studied in people of all ages, including those who do not have dysphagia, to give researchers a better understanding of how normal and disordered processes compare.

Research has also led to new, safe ways to study tongue and throat movements during the swallowing process. These methods will help physicians and speech-language pathologists safely evaluate a patient’s progress during treatment.

Studies of treatment methods are helping scientists discover why some forms of treatment work with some people and not with others. This knowledge will help some people avoid serious lung infections and help others avoid tube feedings.

Where can I get help?

If you have a sudden or gradual change in your ability to swallow, you should consult with your physician. He or she may refer you to an otolaryngologist—a doctor who specializes in diseases of the ear, nose, throat, head, and neck—and a speech-language pathologist. You may be referred to a neurologist if a stroke or other neurologic disorder is the cause of the swallowing problem.

Where can I find additional information about dysphagia?

The NIDCD maintains a directory of organizations that provide information on the normal and disordered processes of hearing, balance, taste, smell, voice, speech, and language.

Some people with dysphagia have problems swallowing certain foods or liquids, while others can’t swallow at all.

Dysphagia is usually caused by another health condition, such as: a condition that affects the nervous system, such as a strokehead injury, or dementia cancer – such as mouth cancer or oesophageal cancer  gastro-oesophageal reflux disease (GORD) – where stomach acid leaks back up into the esophagus


Pathophysiology of Dysphagia

Deglutition refers to the process of swallowing. This process enables the liquid or food bolus to be moved from the moment it enters the mouth, to the pharynx and esophagus, until it arrives the stomach. Normally, deglutition happens in a manner which is smooth and coordinated. It involves series of neuromuscular contractions which may be classified as voluntary and involuntary.

Difficulty Swallowing After Stroke (Dysphagia)

A swallowing disorder called dysphagia often occurs as a result of a stroke. Dysphagia may occur in up to 65 percent of stroke patients. If not identified and managed, it can lead to poor nutrition, pneumonia, and increased disability.

Dysphagia is the medical term used to refer to the difficulty of swallowing. This may also be defined as the feeling of “food sticking” at the chest or throat. It is also described as taking more effort and time to move the liquid or food ingested from mouth to the stomach. This term is derived from Greek words, dys (disordered or bad), and phago (eat) .

There is more info on this website below that will help you understand what this condition is about, I have only tagged a wee bit from that site to here, the site has many links to other areas of help for you.

Esophageal manometry:

It is also referred to as esophageal motility testing. This is a procedure which allows evaluation of the functioning of the muscles at the pharynx and esophagus.

How esophageal manometry is performed (Source:


Swallowing disorders include a number of diseases and conditions that cause difficulty in passing food or liquid from the mouth to the stomach.


Although normally swallowing is automatic, it is a complex process involving several phases and 29 muscles. Saliva helps soften food as it is chewed. The tongue helps move food to the back of the mouth, triggering a swallowing reflex that

passes food through the pharynx. The epiglottis helps keep food from mistakenly going down the windpipe and into the esophagus, the canal that carries food to the stomach.

Swallowing disorders can occur at any phase in the swallowing process. The medical term for difficult swallowing is dysphagia.

Each year, about 10 million people in the United States require medical evaluation for swallowing problems. Some experts say that about 10% of Americans develop symptoms of swallowing disorders in adulthood.

Elderly people are the most likely to have problems with swallowing.

Breaking news – A potential game changer for patients with profound oropharyngeal dysphagia.

Breaking news – The Swallow Expansion Device (SED) – a potential game changer for patients with profound oropharyngeal dysphagia. In early January 2015 the SED was implanted into Jeff Mauerman, a cancer survivor who is feeding tube dependent due to oropharyngeal dysphagia. This is the first FDA Approved Clinical Trial that allows a Medical Piercing to Control a Body Sphincter (Part 1 of 2)

Byline: Ed Steger, President, National Foundation of Swallowing Disorders

Disclosure: Dr. Peter Belafsky is the Medical Director of the National Foundation of Swallowing Disorders.

[Editor’s note. This story is based on an interview between Jeff Mauerman and Ed Steger that was conducted on February 4, 2015.  This is five weeks after surgery and two months before he will know the extent, if at all, to which he will be able to swallow again.]

 Like me, you may have many questions. Who’s Jeff Mauerman? What’s a sphincter? Why would one want to control a sphincter with a medicinal piercing? What does any of this that have to do with swallowing? FDA approved, really? We’ll begin with the question of who’s Jeff Mauerman.

Jeff spent 30 years as an electronics engineer; he is also an oral cancer survivor. Concerned about a lump in his neck, Jeff was diagnosed with stage three squamous cell carcinoma in 2000 after a fine needle biopsy revealed cancer in lymph nodes in his neck. Further examination revealed a tumor at the base of his tongue. He was treated with concurrent radiation and chemotherapy which concluded in March 2001. Due to concerns by his radiologist about his ability to maintain proper nutrition and hydration following his treatment, a feeding tube (percutaneous endoscopic gastrostomy (PEG)) tube was implanted in Jeff’s abdomen. The PEG tube was removed in June 2001 after Jeff had recovered enough to consume food and liquid orally and maintain his weight and hydration needs. Jeff did well for the next 10 years. In 2007 he had his first swallow study and the results showed a more or less normal swallow. Although the study results were unremarkable, Jeff felt food stuck in his throat just above his esophagus. An endoscopy confirmed this suspicion and the food was dislodged without incident.

New health issues began to escalate in 2011 with bouts of pneumonia, fatigue, and weight loss. His physicians suspected lung cancer due to spots on his lungs from a CT scan. Jeff underwent a lung biopsy. The good news, there was no evidence of cancer; the bad news, one of the suspected spots was food which Jeff had inhaled into his lungs while eating. That was the point at which his physicians recognized his pneumonia as aspiration pneumonia. At this time, a new PEG tube was inserted into Jeff’s stomach.

By 2013, Jeff’s swallowing became unsustainable. He had his second swallow study which confirmed aspiration. Aspiration, in this case, is where food and liquid enters the lungs. He met with a speech-language pathologist who prescribed a set of oral exercises. When those failed, he went through an 8-week VitalStim therapy program. A swallow study following the exercise and VitalStim therapy showed no sign of improvement.

In mid-2014, a friend of a friend mentioned success he had had in the treatment of a similar swallowing issue that had been treated by Dr. Peter Belafsky at the Center for Voice and Swallowing at UC Davis. In August 2014, Jeff had a swallow study that revealed esophageal stenosis. He subsequently underwent a dilation. In layman’s terms, this procedure involves the insertion of a long deflated balloon into the esophagus where it then is inflated to help break up fibrosis and stretch the esophagus with the intent of allowing food to more easily pass down the esophagus. This procedure did not improve Jeff’s shallow enough to allow Jeff to resume eating by mouth and the PEG tube remained in place.

At this point, Jeff had lost hope that he would ever be able to eat food again. The PEG tube would become part of him forever.  A call in late 2014 changed all that. Dr. Belafsky called and offered Jeff the opportunity to consider a recently approved phase I clinical trial. If he agreed, he would be Patient One.

What’s a sphincter?

A sphincter is a valve that maintains constriction of a natural body passage or orifice and which relaxes as required by normal physiological functioning. Sphincters are found in over 60 places in the body.

What does a sphincter have to do with swallowing?

One of those 60 plus sphincters in the human body is the Upper Esophageal Sphincter (UES). As its name implies, it is located at the top of the esophagus. During a normal swallow, it relaxes and allows food to pass from the pharynx (throat) to the esophagus in a normal manner without aspirating. The pharynx sits between one’s oral cavity and esophagus. When the UES is compromised, due to radiation, injury, neurologic damage, or other causes, it blocks the natural opening of the esophagus and can cause food and liquids to back up in the throat and enter the trachea (airway). This exposes one to aspiration (food and liquid entering the lungs). Each individual is different, but varying degrees of aspiration can cause pneumonia and even death.

What is the Swallow Expansion Device?

The swallow expansion device (SED) is a small titanium implant that is planted on the voice box through a small incision in the neck. The procedure to place the implant takes less than 15 minutes and is performed without the need for sedation. The implant has a small post (piercing) that protrudes through the skin. When a person swallows, the patient pulls the device forward and the upper esophageal sphincter opens to super-physiologic (greater than normal) proportions and allows food to pass. The procedure requires the patient to allow 8 weeks for the surgical site to heal and for the SED to integrate before attempting to use the device.

An FDA approved a clinical trial

Click on the underlined RED writing

In June of 2014, the FDA approved a clinical trial ( Identifier: NCT02296528) – Safety and Efficacy of the Swallow Expansion Device (SED). This is a Phase I trial that is open to 5 patients with profound feeding tube dependent oropharyngeal dysphagia. The primary outcome measures are an improvement in UES opening and swallowing safety as measured via fluoroscopy. If swallowing is improved and there is no aspiration, the patient will be taught how to coordinate pulling the SED with the correct amount of force at the appropriate time during swallowing. This training will be performed under the guidance of a speech and language pathologist.

There is some fascinating history behind this invention that is explained near the bottom of the clinical trial documentation. Click on NCT02296528 to read more about this trial on

Back to Jeff Mauerman

In early January 2015, Dr. Belafsky and his team at UC Davis placed the SED in Jeff Mauerman. It was done under a local anesthetic through a small 1.5-inch incision. The skin was lifted, the device inserted into the cartilage, the post was pierced through the skin; the site was then sutured, cleaned, and bandaged. It took about 30 minutes to start to finish.

I asked Jeff how he felt about being the “first” patient. He said there was a mixture of excitement at the prospect of being able to eat socially with the anxiety of being that first “trial” patient. The anxiety dissipated after a few days; now there is excitement tempered with the reality of, “will this really work? “ To find out, Jeff will need to wait the eight weeks from the time of the procedure to allow the site to heal properly and the device to integrate. After that, there will be a prolonged training period for him to learn how to effectively use the device during meals. Jeff remains optimistic, but also realistic. In his own words, “if this works, I and my family are beyond fortunate; if it doesn’t, I haven’t lost anything.”

The NFOSD will report back on Jeff’s progress in April. Stay tuned!

Ed Steger would like to thank both the Mauerman’s and Dr. Belafsky for their courage in sharing their story midway through patient #1 in a small phase 1 clinical trial with an outcome that will not be known until the April 2015 time frame.