Laryngeal Granuloma and LPR: A long tale about a small bump

[EDIT: I've posted a follow up to this here.]

[EDIT: there is now a second update here.]

[EDIT: I've just posted a final update on my LPR adventures. I'm going to lock the comments on this and the other LPR posts now, as I really want people to use the LPR Facebook Group instead of posting here (or emailing me) - you'll get much better responses and support there! ]

And now time for some health catch up...

This has been a long time in the making. It's kinda complicated and I've mainly written it for my own personal documentation, for anyone who may want to know more about my throat issues, or anyone who may have been struggling with similar issues. There's not a ton of info about this online, so hopefully this will help clear a few things up.

It took me a while to figure out the entire history of how this particular health issue came to be. As it's become clearer and clearer, it is obvious to me that it was years in the making. I'm going to start as far back as I think may be useful to anyone suffering from similar problems, and do sort of a timeline/progression.

1996 - 2006ish (?)

During highschool, my BA, and my MA, I took copious amounts of Gravol (an anti-nausea drug) because of my IBS. It was one of the only things that helped it. Around 2006 it became clear to me that I'd become both physically (and I'd go as far as saying psychologically) dependent on this OTC medication (I didn't realize this was a potential issue), and quit using it immediately (I now only use it when I am desperately nauseous from travel/motion sickness). 

I mention this because I recently learned that anticholinergics (anti-nausea meds) like Gravol can cause GERD [NY Times - full list of medications that can cause GERD here].

Sidenote (this will be relevant later) I started eating candied ginger for my nausea, and it was super effective!

1998 - 2007, 2012 - present

Took birth control pills (I've been mainly on Alesse and for a little while Evra patches). These can also cause GERD [NY Times] (and contributes to candida issues which can complicate all kinds of chronic health problems).

Summer 2008

I had a terrible bout of bronchitis #1, which started after the flu. It lasted about 8 months, while I was given roughly 7 courses of various stronger and more broad-spectrum antibiotics. Most of these months, my breathing was so restricted that walking 3 blocks to get groceries was extremely tiring and difficult.

Spring 2009

My stomach went berserk, I started getting even worse constipation (part of my ongoing IBS), and a lot of trapped gas and burping. (I can only guess that the copious amounts of broad spectrum antibiotics the previous months did something drastic to the bacterial balance in my already sensitive gut.) 

I finally saw a respiratory specialist at the Pacific Lung Center, who couldn't believe that I've been treated this long with completely unnecessary antibiotics. She took me off the antibiotics and starts me on Advair (a cortisone and salbuterol inhaler that decreases inflammation) and more frequent Salbuterol (rescue bronchidilator) inhalers.

My lungs improved about 50% in a matter of a couple of weeks, and slowly continued to improve after that, but I had to keep using the inhalers indefinitely (if I stopped, things get worse). Chronic phlegm, coughing, throat clearing continued despite the bronchitis dissipating.

Summer 2009

I got a colonoscopy to see if there was an obvious reason for my new digestive symptoms. Nothing was found, so it was blamed on the IBS. Constipation, bloating and burping, as well as flared asthma, chronic coughing and throat clearing continued.

Spring 2010

In late winter/early spring, I got a stomach flu that set off the worst IBS flare up of my life. For about 6 weeks, I couldn't digest anything. I had diarrhea all the time. I couldn't eat fibre or fat, or anything even slightly flavourful. I lived on potato, rice, and chicken broth for the better part of a month or more. I lost almost a tenth of my already low body weight, bringing me down to my lowest adult weight of 85 lbs. (Yes really, yes I know...it's been really slow to gain it back but I have gained most of that loss back and am working my way ever upward. Don't you dare say "that's a nice problem to have", because it's absolutely not.)

Doctors were generally completely useless until on yet another visit to the walk-in clinic, I was prescribed some tiny little opiate pills that are usually not prescribed because they can be addictive or sold on the street. These potent little things made me stoned and sleepy, but they also after under a week started to finally get my intestines to calm down. Finally things started to settle and the extremely slow recovery began.

Just as I was starting to feel better, I caught the flu (influenza) which turned into a brutal cough. Possibly the most violent cough I've ever had. My mom flew to Vancouver (after my uncle who lives here came and took care of me the first night) to take care of me as I was completely incapacitated. She stayed for a week, and I was barely improving by the time she went home. At least this time I knew to just go nuts with the inhalers, and they helped once the worst 10 days or so were past. 

My poor body had been through so much in 2 months that it took me a very long time to really start recovering. In fact, I'm not sure I ever did fully recover from the sicknesses of 2008 - 2010.

Summer 2010 - Spring 2012

The next couple years, I continued to have a lot of asthma, allergies, and sinus issues. I was still constantly clearing phlegm from my throat, and coughing. My voice progressively got more gravelly and weak as time passed. I went to the doctor, but they couldn't see anything. I began to have trouble with my voice at work, as I often did long client calls, and talked a lot with the team. I stopped being able to sing without triggering coughing.

I drank a lot of Emergen-C vitamin C packets and mint tea, and sucked a ton of throat drops trying to calm my throat. I also kept eating a lot of candied ginger for nausea. (I learned later that all of these contributed to the problems in the long run - Vit C is acidic and contributed to irritating my larynx, mint tea decreases lower esophageal sphincter tone which keeps acid from coming up into the esophagus, and the ginger was burning my already irritated throat.)

By winter 2012, I was absolutely sure something was going on. I know my body, and something really didn't feel right. I was having throat pain, a lot of trouble with speaking, and waking up to coughing fits, which I initially thought were from dryness (I live in what I believe to be the driest house in Vancouver, go figure).

I decided to an old doctor I used to go to downtown, who was technically my "GP" though I didn't really feel like he listened to me, so normally I just went to walk-ins. He said (just like the rest) that he couldn't see anything, so there's nothing he could do. I pushed and said that's not okay. He said all he could do is refer me to an ENT (ear nose and throat specialist). I said, "Great. Do that."

I waited three months for my ENT appointment.

Spring 2012

I finally had my ENT appointment. She said it's probably nothing. She stuck a camera on a tube up my nose and down my throat. I gagged a lot. She took the camera out. She saw something.

I have a laryngeal granuloma [warning: nasty photos]. It's small and on the edge of my left vocal chord, right where I've been feeling the pain. That's why my voice is so screwed up.

She told me it must be because of laryngopharyngeal reflux (LPR), and handed me some photocopies to read and a prescription and before I could ask any questions, I was shown out the door.

I went home and read... Lifestyle modifications: more dietary restrictions, sleep on an incline, no food or drink 3 hours before bedtime. The prescription was for a proton pump inhibitor (PPI) medication. 

Risks of PPI:

  • headache, nausea, diarrhea, abdominal pain, fatigue, and dizziness
  • decreased vitamin B12 absorption and eventual deficiency
  • an elevated risk of developing food allergies (which I already have)
  • an increased risk of community-acquired pneumonia
  • an increased risk of Clostridium difficile (good lord, can you imagine??)
  • hip fracture
  • "rebound hyperacidity" when trying to stop taking the medication (this is extremely common, many people can never stop taking it once they start)
  • bacterial overgrown/dysbyosis (already a problem for me)
  • vitamin D deficiency
  • calcium deficiency
  • potassium deficiency
  • magnesium deficiency
  • increase in certain heart arrhythmias 
  • kidney disease

Sure, not everyone is going to have any or all of these. But with a long standing belief I actually have low stomach acid, the risk of increased food or drug allergies as well as getting C. diff or pneumonia are extremely undesirable for me.

I went back to the walk-in clinic about my concern, and the best doctor there was in. He agreed it's not the most ideal solution for me to go on a PPI. He prescribed me Sulcrate Plus, a liquid that coats the throat to protect it from acid damage. I started taking this at night, and also using Gaviscon to try and keep my stomach acid from getting into my throat.

I started the lifestyle modifications and start the medications, and stuck with these for 2 months until my follow up with the ENT. My never ending asthma, throat clearing, coughing, etc. finally subsided. It just stopped. At some point between the bronchitis in 2008 and medication 2008 - 2010, my coughing and phlegm and asthma had changed from being residual bronchitis irritation to reflux and a laryngeal granuloma. What in the heck?

Summer 2012

I went for my follow up with the ENT. My throat was feeling a fair bit better by then. She scoped my throat again and said the granuloma is already gone, and that she couldn't believe the walk-in doc put me on Sulcrafate, because there's no way it would work for that. She told me I can go off the medication, and try easing out of some of the lifestyle modifications, and see how it goes.

I did this, and 6 weeks later, my throat was a disaster again. Possibly even worse. I went back to the walk-in doc, and back on the meds + lifestyle modifications, first half-assed, then whole-assed. It turns out that although 2 - 3 months can be an appropriate treatment for GERD, LPR and laryngeal granuloma sometimes need to be treated for 6 - 12 months (or even longer). Thanks internet. No thanks ENT.

Fall 2012

No improvement. Desperation setting in. In late fall I set out to find the best throat doctor in the city, and discovered there's a Pacific Voice Clinic at VGH and it sounds like the specialist there is very, very good. I got a referral by saying I want a second opinion from what the original ENT's approach was.

My throat gets so bad at times that I am unable to speak for days, and at its worst, 2 weeks straight.

Winter 2012/13

I waited.

I got extremely desperate and came close to caving and going on a PPI or H2 blocker. I read about the risks again... I resisted. I started researching root causes of reflux and any other alternative methods to help it stop and help my throat heal.

I discovered that reflux can be caused by nerve pinches, especially in the upper spine or vagus nerve disorders. I have had constant pain in this area for years. I discover reflux can be exacerbated by a tight ribcage or tense abdomen, both also chronic for me because of my digestive and respiratory issues. [Pediatric/Adolescent Gastroesophageal Reflux Association, National Digestive Diseases Information Clearinghouse (NDDIC), and many anecdotal/less reliable websites and forums]

I discovered that several of the medications I have taken in the past and am even currently taking have likely contributed [NY Times, Nutrition for the Older Adult], some because they loosen the lower esophageal sphincter (LES). I discovered that some vitamin deficiencies such as calcium [Journal of Pharmacology, American Journal of Physiology] and magnesium [Ultraprevention] can cause reflux. I have virtually no calcium in my diet and have low magnesium levels.

I discovered that there are a lot of supplements and vitamins [Dr. Mark Hyman, Journal of Pineal Research if you are dealing with these kinds of issues yourselves, these are the two best articles about alternative approaches] that are known to help digestive issues, reflux, LES tone, and throat healing, and that most of them overlap with the supplements and vitamins my new awesome, integrative/functional medicine GP has recommended for my digestive/chronic pain/fatigue issues. 

Postscript

Learning what I've learned, and finally having found a great GP (who practices integrative/functional medicine) to work with, I have decided to resist getting on acid blocker meds for as long as I can, and focus on the vitamins and supplements that are recommended. I'm also going to work with my massage therapist to try and address any possible nerve related causes.

I can't just accept that this is my body's "natural state", and that the only answer is dangerous medication for an indefinite amount of time. I know that for me there are root causes for this condition, and I truly hope by addressing them that I will start to see progress, and be able to avoid a long or even short course of acid blockers.

If you're reading this and going through a similar challenge with laryngeal granuloma, largopharyngeal reflux (LPR), or even GERD, I would love to hear from you on your experiences and how you've been working on healing.