Friday, July 15, 2016

My Sinus Surgery for Allergic Fungal Sinusitis - AFS

I wanted to make a post regarding my sinus surgery I had yesterday. I think it's important to get the word out there for those who have suffered for years!

I've suffered for 20+ years with chronic sinusitis, allergies, congestion and the whole 9 yards. Years of trips to my PA involved the same routine - steroid shots, antibiotics, Flonase, and allergy pills (I've tried them all - Claritin-D, Claritin, Allegra, Zyrtec, Zyrtec-D, generics, etc...). Using Neti pots gave some temporary relief only to have the symptoms come back in full force. Even saw an ENT back in 2009 who told me I had allergies. Duh!

In December 2015 something changed. There was a constant pulling and spasming feeling below my left eye socket along the cheek bone that radiated into my left ear and into the top of my head. Followed by gallons of post-nasal drip. Neck pain as well. Before long my eyesight in my left eye became blurry and my teeth and jaw bone hurt. I had also lost quite a bit of my sense of smell.

Went back to PA in December 2015, same routine with the meds as before - Augmentin and Flonase . After no relief I also visited a dentist in January because I thought the pain may have been a bad root canal and crown that did not take well in the top of my mouth. Dentist did an x-ray and we noticed the whole left side of my face was nothing but a white cloud. The right side was clear and the sinuses above my eyes were clear. It was evident at that point there was a mass on the left side. He commented it was a sinus infection. I went ahead and had teeth extracted, the top molar that was very close to the sinus cavity that was full and a wisdom tooth on the bottom that was impacted. After a dry socket in the wisdom tooth and an infection of the upper tooth, more antibiotics, this time Clindamycin and then Keflex. Ugh.

Back to the PA in February - May because the pain was still there! More antibiotics this time - Z-Pack followed by Levaquin (which is a separate story), and finally he was about to prescribe Doxycycline with a comment that if that didn't work there was nothing else he could do to help me. At that point I asked to be referred to another ENT.

Thank God I did that. My first visit with the ENT involved going to get a CT scan of my face. This revealed, sure enough, a mass, the same mass as back in January on the dental x-ray. At that point he did an in-office endoscopy which revealed what he thought was probably a fungal infection. It was so bad it had calcified and was losing pus. The "mass" had deviated my septum a bit. He mentioned I would need surgery to remove it and he would send it off for a biopsy just in case. He would not know fully what the surgery would involve until he got in there. This scared me a bit. I also wanted clarification that this was not the invasive type of fungus you watch on a show like "Monsters Inside Me" or something like that. Nope, but he said he would be operating right around my eye and brain!

I thought I would also mention the most disturbing fact was the terrible smell that was emanating from my sinuses. It started at work where I actually was blaming other people, in my own head of course. First it was the housekeeping lady, I thought she had gotten into something rotten. Then as I was sitting in a meeting with my boss and a work colleague, I honestly thought my boss had a bad case of gas. As I went back down to my office, I thought the whole building was on fire. It didn't dawn on me until I was at home on Saturday and  bent over to pick something up that the terrible smell was coming out of my face. Some people describe it as rotting flesh, to me it smelled like extremely burnt beans on the bottom of a pan. Enough of that, it was bad enough to mention to the ENT.

I went on another antibiotic and heavy steroids for the surgery to reduce swelling the week before surgery.

Two weeks later, yesterday July 14th, I had the surgery. At 49, this was my first surgery so I was both a little unwilling and nervous but I was ready for relief. And after all, they were operating on a FUNGUS in MY FACE. What if it spreads or something. I had been told it was painful, not worth it and a long recovery time. My ENT let me know before the surgery that I was anemic, my iron levels were a 10, whatever that means. He said anything below the 10 and he would have called off the surgery. I guess that might explain the hair loss, tingling and numbness in my hands and feet, shortness of breath and fatigue. Something else I need to work on I suppose.

The surgery went well and I consider it a success. As I sit here typing after just having surgery, I can tell you I am in no pain, my face has never felt better and I can breathe out that side for the first time in a while. I am very glad I did this. He did not need to correct my septum or pack my nose. My husband said the doctor mentioned to him that he did need to insert a steroid splint. I can't even feel it and I have not had a pain pill yet. Just a shot or two of Bailey's in my coffee. Works better than anything I think. Had I needed a deviated septum repair, I might be typing a different story regarding pain from what I have heard about that. But this was easy!

I want to mention that I did quite a bit of research on fungal sinusitis and it is quite common in the south where humidity is high. There was a large study done at UT - Southwestern. The Mayo Clinic also conducted research in 1999 that suggests that 96% tested were fungal sinusitis. The fellow that helped me immediately after my surgery had the same surgery and mentioned that 99% of sinusitis issues that don't resolve with meds are probably due to fungus. So don't mess around with it, go get it checked and removed if necessary!

Reading material:

* July 21st - I wanted to update to say that the effects of the anesthesia did take several days to wear off. I had read 24-48 hours it should be out of my system but honestly it was more like 5 days. I have EDS and POTS as well and my POTS symptoms were definitely made worse by the anesthesia. I wasn't expecting that. I was told no bending over, no lifting more than 10 pounds and whatever you do, do not blow your nose. A week after surgery I can tell it has healed and it does feel like it needs a good cleaning out but I'm still not blowing my nose. I go tomorrow so my ENT can clean it all out again, this time though it's just an office visit and take 1 pain pill beforehand.

*July 22nd - Went back for the follow-up appt. My sinus cavity looked so good he did not even need to clean it out. The nasal steriod stent is still there but will dissolve on it's own. I think I am on the downhill slide!

*July 25th - I thought it noteworthy to say that the steroid stent came out of my nose on Sunday. I had complained that there seemed like a lot of mucous the last few days at my Friday post-op appointment. So much mucous that I was choking on it. I woke up Sunday with what I thought was a bad allergy attack. Much more mucous and sneezing. On Friday, I was told I could blow my nose and had no restrictions so yes I blew my nose to clear the gunk out on Sunday. After a sinus rinse a hard object was felt in my nose. I was able to pull it completely out! I almost gagged pulling it out. I called my ENT office today, he is on leave until August 1st. Nurse asked about pain and if I was bleeding. Neither. She said they have seen these come out before, but usually not this soon. This was supposed to stay in and dissolve. I'm curious to see what Dr. says about this development. It would only happen to me!!

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