My swallowing problems, and how I found healing

Joe Grim

The following is a summary of my own personal experience with severe swallowing problems.  I am writing this in the hope that it might be able to help at least one person with their own swallowing problems.


My swallowing issues all started when I came down with a bad sore throat in the fall of 2008.  I had a scraping pain in my throat each time I swallowed.  After having it for a couple weeks, I started having this odd sensation that it took some effort to swallow liquids.  I didn't realize it at the time, but that was my body's natural reaction to pain.  After experiencing pain for a while doing a certain thing, the body learns to try and avoid that pain.  For example, I've always had a tendency to get muscles cramps, especially charlie horses; as a result, whenever pressure is applied to my calf, my body's natural reaction has become to pull away.  Most people have experienced such things with persistent injuries elsewhere in their body.


At first I tried to ignore the swallowing difficulties, thinking they were likely just psychological.  But it became increasingly harder to initiate swallowing.  My sore throat never went completely away for the next several years, and there were frequent bouts of severe sore throat.  I would go to swallow, especially liquids, and it felt like my body was pushing back, trying to keep me from doing so.  My throat and neck muscles began to become tense and painful too, as it became increasingly difficult to swallow, even my saliva; I later learned this is called 'Muscle Tension Dysphagia' (MTDg).  After a couple months I finally decided to go and see my doctor about it.  His answer was that it was likely due to acid reflux, as I had had a history of that over the previous dozen years, as had others in my family.  He prescribed Nexium (an acid pump inhibitor) for me, and told me to wait a few weeks and see if it helped.  The Nexium helped my throat become a little less sore, but my swallowing still became worse.  I also began having a lot of difficulty swallowing solids too.  What really got me scared was that I started to have occasional choking instances, usually only once every week or two.  Often, as I would go to swallow, my body's reflex was to stop the swallow, usually before the liquid got back into my throat.  But, every once in a while, this stopping reflex would kick in as the liquid was already back in my throat, causing some of the liquid to go down my wind pipe instead.  I would then be unable to breathe for half a minute or more (I once timed it, and it was 53 seconds until I could pull in the slightest gasp.)  I became afraid I would die, choking to death.  This created a great deal of anxiety and fear of swallowing, so that the psychological impact made my swallowing much worse.  I dropped down as low as 157 pounds: the lowest weight I had been since middle school, and way too skinny for someone 6' 1.5" like me.


Over the next half year, I went to specialist after specialist.  The first one I had to wait 2 months before an appointment was available.  After this painfully-long time of waiting, I decided to insist on all future appointments that my case was bad, and I needed to see the specialist as soon as possible.  Fortunately, this always allowed me to be seen much sooner than if I had gone with their default "earliest available" appointment.  I had endoscopies, an X-ray barium swallowing study, a CT scan, and MRI.  I went to specialists in GI, ENT, neurology, allergies, and more.  Everyone told me that there was nothing in their area of expertise that would physiologically cause me to have my severe swallowing problems.  Many of them began to insist that it was a psychological problem, and a couple were quite unkind in telling me so.  I always fully admitted that there was a psychological aspect to it, but I knew the root cause was physiological.  I did try going to see a psychiatrist, who tried a succession of different medications, but none of them helped me, and some of their side effects were no fun, such as causing me to feel very apathetic, and one caused me to gain 20 pounds in a month.  It was also very hard to back off one of these medicines, as the withdrawal caused me to have very frequent weird adrenaline rush feelings for no apparent reason, which I had never previously experienced in my life.  Psychiatric medicine definitely helps some people, but it certainly was only a hassle to me, though I'm glad I explored its possibility and was able to rule it out.


I became desperate, and was willing to try and see anyone who might be able to help me.  I had always been suspicious of chiropractors, wrongly so, but finally going to see one gave me my first glimpse of hope.  After seeing my tight neck, throat and shoulders muscles, as well as my vertebrae that were out of place, he was quite confident an adjustment would work.  He put my vertebrae back in place, and I was so excited to find out that it helped a little!  Over the next year, I went to see this chiropractor once or twice per week, and it would provide some relief, but I would always relapse within a few days, because the root problem was muscular, not skeletal.  After doing much research on my own, I wondered if maybe a massage therapist would help.  So, I asked the chiropractor if he could refer a massage therapist.  Suspiciously, he was quite evasive to this possibility, saying that it probably wouldn't help, or that he would try and find someone and let me know at the next appointment.  But, he never provided a referral, even though I asked repeatedly.  Finally, I decided to go and see another chiropractor.  He was very receptive to referring me to a massage therapist, and I very soon had an appointment.  Unfortunately, this massage was a deep muscle massage, something my body was not ready for.  It was agonizingly painful, and afterwards I immediately had a lot more muscle pain in swallowing than before.  This regretably caused me to put off any further massages for more than a year.


My wife Frederique was an awesome support all through this ordeal, and if it were not for her, I'm nearly certain I would have committed suicide, because the constant strong pain and fear were nearly unbearable.  One day, she saw a flier at the gym for a type of light massage called Muscle Activation Techniques (MAT).  She insisted that I give it a try, but I was doubtful because of my previous terrible experience with deep tissue massage.  However, I did give it a try, and after the first session, I had a 50% lessening in the painful muscles in my neck and throat.  Within a few weeks, 90% of the pain in my muscles was gone!  For the first time in over two years, I finally started having sustained improvement in my swallowing!  I still had a chronic stinging, sore throat, but at least my muscles were not hurting so much anymore.


When I wasn't able to fully recover, I continued to look for solutions for further improvement.  One person who was able to help me was a biofeedback specialist, who hooked me up with electrodes and confirmed that my throat and neck muscles were still too tense, due to the MTDg.  She referred me to an awesome physical therapist, who was able to help me even more.  She did research on her own time, and was able to find all the muscles that were tense, or that were attached to the tense muscles; then she massaged them for me, and showed me how to massage them on my own.  These massages even included massages of my tongue and other muscles most easily accessible in my mouth.  I began to see even more improvement, and finally I would have occasional stretches of time with absolutely no muscle pain when I swallowed.  It wasn't until I began taking a low dose of a muscle relaxant that I finally ended up with no muscle pain most of the time.


For dealing with the psychological aspect of the difficulty swallowing, my greatest help was finding out that the choking episodes were only caused by my vocal chords closing off my airway.  This is how they are supposed to react when something other than air goes down our wind pipe; it's just that for me, they stayed closed for way too long.  I found that if I just relaxed while choking (not easy to do), that I would be able to breathe again a lot sooner.  Knowing that I had nothing neurologically wrong, and having trust in my body to protect me, really helped me deal with the psychological aspect.


However, I still had a sore throat that would never completely go away, with frequent severe bouts.  Finally, I had an operation (arthroscopic Nissen fundoplication) that fixed my acid reflex problems.  A few months after that procedure, I finally had a time when I had absolutely no sore throat at all!  I still have a sore throat more often than most people, but I am so happy that I don't have one most of the time!


I still deal with very mild difficulty swallowing now, but I am grateful that I am at least 98% healed.  The key to healing was dealing with the root problems: the sore throat that started it all, and the resultant muscle pain and anxiety.  It's also been important that I take good care of myself: giving myself massages every morning, and as needed; going for a monthly massage to address areas I can't reach; treating a sore throat as soon as it starts to come on (as sore throats can cause a brief relapse); and keeping a positive attitude.


During the first year of my swallowing difficulty, my Mom's best friend also had to deal with her own swallowing problem.  Unfortunately, the doctors took too long in looking for a solution to the problem, and by the time they figured it out, she had terminal throat cancer.  Therefore, it is imperative that anyone who has swallowing difficulty seek out medical help as soon as possible, just in case it is something terrible, and possibly treatable, like cancer.


Here is a list of important things I learned:

- Rule out life-threatening possibilities first!

- Don't be afraid to ask your doctor questions, instead of just letting him/her ask.

- If the first available appointment with a specialist is a couple weeks or more away, don't be afraid to insist on asking if an earlier appointment is possible; usually, they can find a way to fit you in a lot sooner, if pushed.

- Don't give up; keep looking for new possibilities until you find a full solution.

- Look at multiple options for help at once.

- Don't get "stuck" going to see only one doctor who keeps trying with little or no success.


You can feel free to contact me at any time if you would like to have my thoughts on swallowing difficulty, or would just like to talk to someone who can relate. You can find my e-mail address at the bottom of my webpage.