In the past few weeks I’ve added a new specialist to my repertoire of doctors. You are well aware of my trips to see Dr. Rheumy and also Dr. Orthy (HA HA HA, that still cracks me up!), but recently I’ve added a new doctor. His name, Dr. ENT.

ENT. *gulps*

Yup, Ears, Nose, Throat Specialist.

Even saying, er, typing those words makes me shudder and gulp every time. I’ve avoided seeing an ENT for some time now. I have had a hard time admitting it was time to finally go see one.

Why did I see an ENT? Well, for 2 out of 3 reasons why. For my Ears and my Nose.

I actually don’t remember a time where I didn’t have a headache. This is a major issue. I also don’t remember a year where I wasn’t on some form of antibiotic. This is another major issue. I am now officially allergic to two types of antibiotics, which is a lot of fun writing it on ‘list medications your allergic too’ as well as trying to remember how to spell them. It also sucks that a third antibiotic type doesn’t knock the sinus infection out of the park; it just festers. So, I’m left with the delightful antibiotic that people use when they have a limb amputated. Ya, that’s right. L-I-M-B. I’ve reached a dead end.

For the last few months, I’ve tried battling this sinus infection NATURALLY. I’ve been using the Neti-pot on a regular basis, taking grapefruit seed extract, sniffing lavender and other types of oils, and of course, using my nasal allergy medication.

But its NOT working. I’m still doing it, but its not working.

Enough is enough. I’ve hit a breaking point. I’m sick of feeling lightheaded, fuzzy, and not quite myself. I’m sick of taking pills and antibiotics, especially when there’s a study out there saying sinus infections should not be cured by antibiotics. I’m sick of the constant headache.

So, I saw an ENT. But wait, I said I saw the ENT for an additional reason. My ears.

This is a really sensitive topic for me. I almost didn’t write about it and quite frankly, I’m still trying to process what I’ve learned.

I’ve lost hearing. There I said it. It’s pretty severe too, and its very disheartening to hear its hereditary. They said it could also be because of your sinus infections, and a long shot that its caused by your auto-immune disease – ankylosing spondylitis.

Shit. Just shit.

So, what am I officially diagnosed as? Cookie Bite hearing loss. When a person suffers from cookie bite hearing loss the person has problems hearing mid frequency sounds. It is less of a problem to hear high and low frequency sounds.

Super, right? Well, on the positive note, they haven’t recommended hearing aids, but at this point, its not a bad idea. I knew that I had lost some hearing, but I thought it was more in the range of losing whispers, not mid frequency sounds. Are you kidding me? Regardless, they want to re-test me after they fix my sinuses.

What’s that you say? Fix? Well, yes, apparently fix. I had a CT scan this morning. We all remember my last CT scan for my hip. This time it was for my head. As Mr. P described “We get to really find out what’s inside!” I have to say, getting a CT scan, without contrast, and for your head, is much more enjoyable. I didn’t have to change into a gown and only had to remove my glasses. It took about 5 minutes and my eyes were shut the entire time. There is a sense of relief when you know your on the path to discovery. This discovery, to find out what’s going on with my sinus cavity.

So why do I have so many issues with my sinuses? Remicade. My favorite, most beloved drug, that’s given me my life back, has horrific side-effects. If you remember from my post a few months back on how large the warning label is, and that the fact that I’m making my Halloween costume out of it, yup, that drug.

At this time, if my sinus cavities are proven to be blocked, inflammed and swollen, I will have to have surgery. At the moment, Dr. ENT (not a very fun name! Note to self – come up with a more clever, fun name!), wants to do a procedure called Balloon Sinuplasty. Using this technology a balloon catheter is delivered to the blocked passageway, and is gently inflated, widening the opening of the passageway and thus allowing drainage and relief from the pain and pressure. Here’s the link to the video explanation (which paints a better picture!) Good news? They don’t have to remove part of my nose. The bad news? I am most likely going to need to have this done.

There is a plus to all of this. Dr. ENT knew was ankylosing spondylitis was!! I was shocked! I usually have to sit there and REMIND my doctors its an auto-immune arthritis, but that I’m in medical remission. Yup, he knew what it was!! He asked me “describe your symptoms and problems.” Answer: “I have extreme pressure in my sinus cavity. I’ve had a constant, chronic sinus infection since November and I’m allergic to two antibiotics. I’m running out of options. Also, I’m on a drug called Remicade for my ankylosing spondylitis…” He cut me off, right there. He knew that one of the side-effects to Remicade is chronic sinusitis. We started talking about how horrific AS is as a disease, that he saw a man dying in his body 20 years ago. How awful! We’ve come a long way my friends. What truly touched me it changed Dr. ENT’s life forever. Woah! WOW!!

So, today, I am grateful. I’m grateful I took the step to finding out the truth. I now know I have hearing loss. If you know me, you talk to me, now you know why I sometimes can’t hear you. Because I can’t. I will soon know if I will need to have the Balloon Sinuplasty procedure which will hopefully give me relief. Relief from the constant headache, the constant feeling of ‘sick’ and a lack of energy. I’m grateful for Dr. ENT understanding and recognizing my issue with my AS and to take it as seriously as it deserves. I’m grateful I had the courage to go see an ENT. I’m grateful we’ve come a long way with technology and science.

So, let’s end on a good note. I came across this site today and I am in LOVE! Who doesn’t want to eat a BIG bowl of cookie dough? Ya, I’m not even kidding. It is indeed a recipe I will be trying and have pinned on Pinterest!

Much Love,

If you’re a newbie here, welcome!


3 thoughts on “Dr. ENT

  1. You are my hero. I have terrible chronic pain and many days I think of you when I think I cannot cope. I hope you know. what a wonderful differance your are making to many of us long term chronic suffers. Like the song says, you lift me up. I have hearing loss to from being a police dispatcher. I cannot stand loud sounds and have to be in quiet . I cannot hear when most people speak to me. I speak to loud. Its a scary reality. I hope beyond hope you find relief soon. Keep up posted, we are behind you 100%


  2. I was all ready to post on here, how great it is that you found a doctor who not only understands your disease, but listens. I have doctors who after seeing them for several years still can’t remember that I don’t have a colon or what my main diagnoses are, even though we discussed them just last week.

    However, I then read your ENT update. Ugh. I deal with chronic pain on a daily basis, and although my migraines might not be the worst pain, they are probably the most all consuming. When curled up in a ball from my other “issues,” I can at least have the tv on or play some music, etc. With a migraine, I need a dark room that is quieter than quiet; any sort of distraction is out of the question.

    I saw in your other post that you asked for some headache suggestions. Mine originate from a different source, but sometimes a chiropractic adjustment can help to relieve pressure. I also use the cool eye masks, My migraine meds and sleep when possible are the best resource though (when they work). Have they given you anything to take? In the past I found Excedrin to be extremely helpful for my migraines. Due to my GI issues, I’m not supposed to take anti-inflammatories now, but if I’m being completely honest, I will occasionally give-in if things are bad enough with my headache and/or arthritis. It is amazing what those 2 pills can do when so many of my prescription meds have “failed.”

    I hope that you find something to help! Did you at least come up with a fun name for your ENT?


    • Your comment is amazing. Thank you so much for the time to reply and give such wonderful suggestions. 🙂

      I will have to try the cool eye masks and purchase OTC migraine medication. I’m hoping that the headaches are just stress headaches which I hope to have disappeared in the near future. Yoga will be coming back into my life starting in June, well at least the outdoor yoga that I love so much, and that always helped clear out a horrible headache. Just the smell of nature, my toes in the grass, and breathing deeply calms me in a way nothing else really can. Not even a bubble bath, and I LOVE THOSE! 🙂

      I think headaches and brain fog are the worse to deal with. The pressure doesn’t ease and not being able to think clearly is frustrating. The whole process is frustrating. 🙂

      I think my doctor name for ENT will stay as Dr. ENT. I think adding a “y” at the end will make it weird!!

      Thanks again for the comment and thanks for following. Its always nice to get such helpful comments. 🙂


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