Small Victories

I wrote an earlier piece on livingwithss.com detailing Gary’s intermittent swallowing problem. The Danger Of Dysphagia outlines some serious risks you may face if you choke while eating or drinking. Gary has been evaluated on a regular basis since that first baseline test.

Steps In the Right Direction

Earlier this summer, Gary had been referred to an endocrinologist for a lump he was feeling on the front of his neck. He had a past history of thyroid cysts so after X-rays and a scan they decided a biopsy was needed. Fast forward through the nail-biting, the lump was benign, but he was referred to an otolaryngologist closer to home for an opinion on surgery.

Superficial siderosis can bring so many different symptoms the merry-go-round of specialists many of us visit can leave us exhausted and confused. When you stumble across that rare physician who is both caring and delivers an answer it can feel like you’ve just won the lottery. This consult was extremely satisfying. Dr. Kayla Jasper was kind, patient, and answered all of our questions so well I asked if we could transfer all of Gary’s ENT/swallow care down to Shreveport. She agreed to reschedule another visit after the test results from his upcoming Little Rock swallow clinic visit were complete.

He was given a Modified Barium Study (MBS) during our return to the swallow clinic in Little Rock. The MBS differs from the FEES swallow test. The different textures he swallowed were coated with barium (barium will light up) so they could follow along as things moved from his mouth, past the pharynx, and into the esophagus. This wasn’t explained to us at the time, they simply did the testing and told us they would schedule a return in 6-12 months.

Gary now felt like his lump was changing shape when we returned for our Shreveport follow-up so after a short chat about that problem Dr. Jasper brought up the results of his MBS test. I was mentally prepared to hear the We’ll keep an eye on it talk but you can imagine my surprise when she said she was pretty sure what was wrong and would we like them to fix it?

Fix it? My inner dialog was all over the place. No doctor has ever said they may be able to fix anything.

Cricopharyngeal Dysfunction

Your esophagus is a tube that connects the throat to the stomach. There is a semi-circular muscle at the top of your esophagus, the upper esophageal sphincter (cricopharyngeal), which stays tight and closed the majority of the time. When you swallow, normal nerve function will relax the cricopharyngeal sphincter to allow food or liquids to pass through. This dysfunction has a slow gradual progression which explains why Gary only chokes intermittently now. If left untreated the progression will often limit people to soft foods or in worst case a liquid diet.

Treating Cricopharyngeal Dysfunction

The first step will be a Botox injection to temporarily paralyze the sphincter muscle. This is done under anesthesia (day surgery) and if this approach works for Gary then we will look at a permanent procedure called Cricopharyngeus Muscle Myotomy. This procedure requires a small incision outside the neck where the physician will make a cut into the sphincter muscle that will prevent it from over-contracting permanently. The botox trial is to make certain this is a viable fix since the permanent cut can not be undone. 

The Outlook?

If Gary’s swallow problem is limited to his over-tight cricopharyngeus muscle then this will provide a resolution to his dysphagia. Only time will tell if he develops any other superficial siderosis swallow mechanism abnormalities. One important fact to keep in mind is this dysfunction is not rare. Anyone who experiences the feeling of food being stuck in their throat should be checked as this can be brought on by something as ordinary as aging. 

Dr. Jasper has been wonderful. She has scheduled  the lump behind his thyroid to be removed during the same day surgery  (she referred to it as a two-fer) so there won’t be a need for a separate surgery. She listened patiently to Gary’s complaints about the myriad of problems he experiences that are not her specialty with close interest. We received a scheduling call for a gastroenterology consult  just days after our visit from her referral. Gary has been complaining of severe pain and bowel problems for over a year with no resolution. Finally, a step in the right direction.

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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,

One Comment

  1. I wish Gary well. I’ve noticed for almost a year, that I just need to eat much slower and do better with soft foods, which also helps with the bowel problems.
    Before I knew what I has, I told my doctor I has SS ( slow sphincters) which was profectic I suppose !!!
    I also understand how some doctors, seem to be aloof, and I’m wondering if they feel there’s nothing they can do, so they don’t want to deal. Whatever , many think I’m upbeat. Lately my balance is really becoming a problem.

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