My Adventurous Life with Arthritis
I have RA, but RA doesn't Have Me!
Divine Intervention
Is it true? Does it really happen? Do we sometimes miss it, absolutely! But not this time. For over a year I have suffered from an issue that I struggle to describe, but if you were around me you would think I was a cat trying to cough up a hairball.
I saw an allergist who asked me to provide a sputum sample which I did, and the results showed I had two different types of infections, so I was treated with one antibiotic for a month and then a second antibiotic for two weeks. I saw relief for a short period of time and then was right back where I started.
I would describe it to my family like a pill hung in your throat but more like a gob of something. Once I coughed it up which often took hours, I felt so much better. My family will tell you my hacking got on their nerves and my response is it got on my nerves too. There were many times that I thought I could not breathe as it felt like it was cutting off my airway. Nothing and I mean nothing helped. Not over-the-counter allergy medications, decongestants, hot coffee, nothing that I tried worked, I just had to endure and cough it up.
Fast forward, I was having what I thought was heart problems as I was having chest pain and shortness of breath on exertion, and I made an appointment with the cardiologist I had seen 10 years ago for the same problem. By the way, rheumatoid arthritis does cause organ damage as well as joint damage, so my rheumy had wanted me to stay on top of things like this. He ran every test possible and cleared me with my heart and suggested I go back to my pulmonary doctor as he felt my problem was related to pulmonary.
Over the months I was having my “hairball” experience I would often take a picture of my sputum. I know nasty right, but I wanted to be able to show what I was coughing up because sometimes I honestly thought it was pieces of lung. You might want to scroll on past here if you are squirmy because I thought I would share what I was coughing up. Okay, maybe I will not post pictures because it is pretty nasty looking.
I went to see Dr. O’Neill who I have always adored, because every time that I have seen him, he believes me when I say I have a problem, even if it does not make sense, he will try to figure it out. He listened to my complaints and looked at my pictures, though I do not think he cared to see them and would say he did not have to see the pictures, that he believed me when I described what I was experiencing. He decided to do a bronchoscopy and on follow-up told me that he did not find anything in my lungs, that they were relatively clear, and it was nothing like what I had shown him in my pictures. Some doctors would have stopped there, as I was complaining of coughing gunk up, and after a bronchoscopy, he was sure it was not coming from the lungs. He did give me a sputum cup to get a sputum sample. Maybe he thought my pictures were not mine after all and he wanted to see for himself. Wanting to help me, he ordered a CT scan of my head. Now that seemed a little odd to me, but he is the doctor. Maybe he was checking to see if I had a brain as it does not take long knowing me to figure out there might be something missing.
The CT scan was on a Friday and Saturday morning I get a call from Dr. O’Neill who asked me at the time what I thought were weird questions. Are you having any pain on the left side of your head? Eye pain? Ear? And on and on and I was like “not really.” He then told me that if I had excruciating pain to go to the closest emergency room but that if I started having pain on the left side, but not urgent, to go to a larger named medical center. He then proceeded to give me his cell phone to call if I had any problems. That was a bit alarming as I have never had a doctor do that before. He said he was going to get me an appointment at a major medical hospital asap. I shared this call with my family later and they were like well what did he say he saw, why was he concerned about these things, and my response was, “Um I didn’t ask.” So, the weekend proceeded on, and on Sunday I was able to get a decent sputum sample and told my boss I was going to run it to the office on Monday morning and I would not be gone long.
When I arrived at the doctor’s office, I simply wanted to drop off my spit sample and be on my way but was told the nurse wanted to see me. When she came to the door, she said the doctor would like to see me in his office and my response was I only have a minute. It was not until this very moment that I got a little nervous because in the movies it is when you go into the doctor’s office that you get the bad news. But crazy me all I was thinking was “make it quick” as I need to get back to work. I am such a nut about work and usually put it before my health. The Doctor explained the CT scan showed a mass, and I think that was when I really did not hear much of anything he was saying, until the end when he said he thought the mass was an infection, or at least that was what I heard. He did tell me he was able to get me an appointment with the best doctor Duke had, though he had hoped to get an appointment sooner than he was able to.
Until an appointment was made at Duke and until I went to the appointment, I really did not worry about it a lot, thinking it was an infection and no big deal, some antibiotics and I would be on my way. I had a really bad infection in my head after sinus surgery, 10 years ago and had to have IV medications. I will never forget it because I was starting a new job as a hospice social worker and I was so concerned that if they knew I had an IV central line, they may not let me start to work. So, I made sure it was hidden well, in loose clothing so it could not be seen. Hmmm, I guess if they read this they will know now. Oops.
So fast forward to my appointment. I was seeing the head surgeon of Otolaryngology (a head and neck surgeon) at Duke. I saw another Doctor first, I think he was doing his rotation in that area of study, and he as you can imagine asked me a zillion questions as they do at teaching hospitals. I am used to it as I usually go to Duke for my medical needs as I am “high risk” whatever that means. It was not until the Doctor started asking me the same questions, have you had headaches, eye pain, and so on that, I started telling him about what I thought were weird experiences I had that had come to mind over the week between Dr. O’Neil’s questions and this appointment. I recalled several times having what I remembered once telling Chip that I thought I was having a stroke or at the very least Bell’s Palsy. I was out of town at a meeting, and I was at the hotel talking with a co-worker when my left eye began hurting really bad and I began to feel like the left side of my face was drawing up. It was so bad that I wondered if the person I was talking to could see it. I excused myself and when I went to the room I went straight to the mirror. The left side of my face felt like it was pulling on the inside, and my eye was hurting, but it looked fine in the mirror. I honestly thought I was going to have a stroke that night. The next morning this was fine, but it happened a couple more times over the next couple of years. I always tried to figure it out as every time I was talking to someone at an odd angle, and I thought it had something to do with holding my eye in a turned position too long. I always tried to find a logical explanation for things that did not seem right, but I never follow-up on them, and live with it. I have had headaches for so long that I did not even think about them, they were part of my life, and I continuously took over-the-counter pain medication only when it was too bad to tolerate. So, when Dr. O’Neill asked about headaches, I did not think much about it, but over the next week of course I did think about it as well as focused on the headaches, where was it hurting, did it seem any worse, and I shared this information with the doctor. I had complained to my family for months that my face hurt like it felt swollen. I was constantly taking my glasses off because they were pushing against my face, though I am blind as a bat without them and could not leave them off for long. Little things that I had not thought much of were now jumping out at me like I had complained of facial pressure when I bent over. I always thought I had the weirdest issues and would keep pushing on. So, apparently, everything I described to him was what was expected with tumors like this. Wait, what? A tumor? I thought I had an infection. The head surgeon, who is beyond amazing and not bad to look at either, though I am old enough to be his mother I am sure, showed me the CT scan, and apparently, these things had deteriorated the bone of my left eye orbit and at the base of my brain on the left as well.
The large arrow is pointing to the mass that had deteriorated my skull.
This arrow is pointing to the mass and where it had eroded my eye socket
Day of surgery and you can see how my eye is swollen based on the size of the eyelid-I was not looking at that when I took the picture but was sending Chip selfies because he had to wait in the car because of COVID protocols.
I will not go into a long discussion of what all he said but the gist of it was I had to have surgery and if I did not this thing would continue to grow and would eventually cause my eye to pop out and further damage to my skull. Now to me I literally thought it meant to pop out, like laying on my cheek, but I think he meant was it would make the eye protrude out as I, of course, went and googled it and though the definition of a tumor is a swelling of a part of the body, generally without inflammation, caused by an abnormal growth of tissue, whether benign or malignant. And though I did have a growth it is referred to as a mass called Mucoceles which are benign, locally expansile paranasal sinus masses.
EXCERPT from my medical record
[We discussed surgery as the treatment for the mucocele. We discussed risks including, pain, bleeding, infection, injury to the eye and/or brain, CSF leak (higher risk in her case given bony erosion seen on imaging)].
I agreed of course to the surgery but asked if it had to be immediate. He looked at me like I had three eyes so I explained my husband and I wanted to go to the Grand Canyon this year and if there was a chance, I could lose my vision in that eye or worse, die, as we all know there is always that risk with surgery, then I really wanted to mark this off my bucket list first. So, he agreed and wanted to schedule it immediately upon our return. Well, yeh, that will not work either as my niece was getting married, and well I needed to wait till after that because I did not want to take the chance of ruining that. So more reluctantly he agreed.
We went on our trip, which is another blog, and though I did have increased pain at times, I am glad we did it just the way we did.
The surgery was successful according to the Doctor. I have yet to ask him if I lost any brain fluid, but I am pretty sure that I did because I have CRS (can’t remember stuff) that is worse than it already was, okay so it is probably just age and overload, but I can blame it on surgery just to avoid the age discussion. The surgeon did tell me they had found a third mucocele while in there, on the sphenoid, which is the rarest of these suckers. Leave it to me.
I did have some after surgery complications with infection and blood clots, and for a little while I did not have any of the gunk building up and coughing, but unfortunately, it did come back, though, not as bad, and I recently had my last appointment with Dr. O’Neill, who sadly is retiring at the end of the year. He referred me to a great allergist in Lynchburg who is working on eliminating this severe post nasal drainage. Even though I started back my hacking, it is not as bad, and regardless, I am glad I had it in the beginning because without that issue and Dr. O’ Neill’s persistence to try to get to the bottom of it, my mucoceles would have continued to grow unnoticed and caused even more damage.
So, if you ever have something weird going on, do a follow-up on it, and I pray for you to have someone as awesome as Dr. O’Neill because he has never let me down and has always been beyond thorough to figure out what is wrong with me, well we all know no one will truly figure out what is wrong with me as I am often told: “You are not right.”
This blog was started many months ago to share my Divine Intervention, but it is ending with a huge heartfelt thank you to Dr. O’ Neill, though you will be missed beyond measure, I hope you enjoy your retirement, and though there will never be another that compares to you, I pray whoever takes your place (they will never fill your shoes) will care as much as you do about your patients, even though sometimes you can be cranky, you are the best there is, and you never doubted me and for that I am grateful. God used you as my Divine Intervention.
My Adventurous Life with Arthritis 
Wow ! I love reading your stories but this one is heart wrenching. I’m so glad you received great care. You’ve dealt with so much and are a strong beautiful woman. Your journey’s not done yet.
Love…Hugs…Prayers
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Wow Kathy! I’m glad you had such a terrific doctor…
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