Sinus Surgery!

[TJ_Fitz]

I just had sinus surgery done on 9/26/18. I'm not sure how much it's going to help my CFS/fibro symptoms, but I'm hopeful that it will make a difference. I'm less than a week into recovery now, and I don't really expect to see changes until I'm mostly healed from the surgery, which takes about two weeks. There's some good research on PubMed showing improvements in pain, fatigue, and other quality-of-life factors after sinus surgery, so I'm hoping that will hold true for me also.

I've written some blog posts about the process, so I'll refer you to those rather than rewrite what I've already written:
https://ariseandshine000.wordpress.com/2018/08/05/hope-for-a-cure-part-1/
https://ariseandshine000.wordpress.com/2018/08/08/hope-for-a-cure-part-2-first-ent-visit/
https://ariseandshine000.wordpress.com/2018/09/09/well-that-didnt-work-hope-for-a-cure-part-3/

 

[TJ_Fitz]

Last post in the series:
https://ariseandshine000.wordpress.com/2018/10/19/hope-for-a-cure-part-4-consolation/

Since no one has responded to my blog posts, I'll give a summary here.

In July, I saw a holistic dentist to check for dental cavitations. He ordered a CT scan, and my jaw tissue looked healthy, so no cavitations! However, he noticed something suspicious in my right maxillary sinus that he thought could be an infection. I went to an ENT to look into that further. She scoped my nose and saw lots of inflammation in my nasal passages and down into my throat. She put me on a course of antibiotics to clear up any bacterial infections, and she also put me on prednisone and Flonase to get the inflammation under control (I felt great on day two of prednisone -- see this post). I went back for another CT scan after the antibiotics, but nothing had changed, so she thought I'd be a good candidate for sinus surgery. (That's really what I wanted anyway, because I figured if this was an infection, that could be the cause for my CFS and fibro symptoms, and there's no way to be sure what it is without doing surgery and cleaning it out.) She referred me to an ENT practice that did lots of those surgeries, since that wasn't her usual kind of work.

The first ENT I saw at the next practice didn't want to do surgery until I had been on medical intervention for longer. He wasn't confident that it was an infection we were seeing. I did wait and stay on Flonase as directed, but rescheduled with a different ENT at the practice because I was annoyed by the first guy I saw. The second ENT I saw there felt confident that I had infections in my ethmoid and frontal sinuses, and wanted to go forward with surgery. I had sinus surgery on September 26, 2018. However, the pathology report showed no sign of infection in the material removed during surgery, so I kind of feel like I went through all that trouble and expense for nothing. I had expected this surgery to be a sort of miracle cure for me, but if there was no infection to start with then I was still without an explanation for my symptoms.

 

[Cort]

Last post in the series:
https://ariseandshine000.wordpress.com/2018/10/19/hope-for-a-cure-part-4-consolation/

Since no one has responded to my blog posts, I'll give a summary here.

In July, I saw a holistic dentist to check for dental cavitations. He ordered a CT scan, and my jaw tissue looked healthy, so no cavitations! However, he noticed something suspicious in my right maxillary sinus that he thought could be an infection. I went to an ENT to look into that further. She scoped my nose and saw lots of inflammation in my nasal passages and down into my throat. She put me on a course of antibiotics to clear up any bacterial infections, and she also put me on prednisone and Flonase to get the inflammation under control (I felt great on day two of prednisone -- see this post). I went back for another CT scan after the antibiotics, but nothing had changed, so she thought I'd be a good candidate for sinus surgery. (That's really what I wanted anyway, because I figured if this was an infection, that could be the cause for my CFS and fibro symptoms, and there's no way to be sure what it is without doing surgery and cleaning it out.) She referred me to an ENT practice that did lots of those surgeries, since that wasn't her usual kind of work.

The first ENT I saw at the next practice didn't want to do surgery until I had been on medical intervention for longer. He wasn't confident that it was an infection we were seeing. I did wait and stay on Flonase as directed, but rescheduled with a different ENT at the practice because I was annoyed by the first guy I saw. The second ENT I saw there felt confident that I had infections in my ethmoid and frontal sinuses, and wanted to go forward with surgery. I had sinus surgery on September 26, 2018. However, the pathology report showed no sign of infection in the material removed during surgery, so I kind of feel like I went through all that trouble and expense for nothing. I had expected this surgery to be a sort of miracle cure for me, but if there was no infection to start with then I was still without an explanation for my symptoms.

Don't you hate when that happens! Surgery for no reason (lol). Still it was a good try and the sinuses can really harbor some nasty bugs. Here's one person it did work for

https://www.healthrising.org/forums/threads/sinus-surgery-does-the-trick.39/

 

[TJ_Fitz]

Yeah, it's frustrating, but you don't know until you do it. As an added bonus, I have developed a perforated septum since the surgery, so now my nose whistles. It's lovely trying to fall asleep with that noise in your head.

 

[TJ_Fitz]

I've been seeing a new ENT here in North Carolina since February (2021). We've done the due diligence of antibiotic and antifungal treatments, I got approved for a new CT scan, and we are now awaiting approval for a new sinus surgery.

I'm confident that it will be different this time around. This doctor seems to understand his craft at a higher level than those I've seen before. He explained that the tissues in our sinuses alert our immune systems to prepare for whatever is in the air we're breathing. There are tiny hairs that sweep particles from the air into and back out of the sinus cavities. My CT scan showed what looked like infections in both maxillary sinuses and one of my frontal sinuses, and it looks like the passages into those cavities are too small, and possibly not in the right location to allow matter to be swept back out by those hairs, so my body is unable to sweep out the infection/biofilm.

He doesn't use the common microdebrider technique to "drill out" your sinuses. He prefers to use a balloon, because it leaves the hairs and tissue intact while widening the openings into the sinuses.

It makes sense that I should experience a significant improvement once the body burden of chronic sinus infections is removed, and this guy seems like he might be able to make that happen!

 

[Cort]

I've been seeing a new ENT here in North Carolina since February (2021). We've done the due diligence of antibiotic and antifungal treatments, I got approved for a new CT scan, and we are now awaiting approval for a new sinus surgery.

I'm confident that it will be different this time around. This doctor seems to understand his craft at a higher level than those I've seen before. He explained that the tissues in our sinuses alert our immune systems to prepare for whatever is in the air we're breathing. There are tiny hairs that sweep particles from the air into and back out of the sinus cavities. My CT scan showed what looked like infections in both maxillary sinuses and one of my frontal sinuses, and it looks like the passages into those cavities are too small, and possibly not in the right location to allow matter to be swept back out by those hairs, so my body is unable to sweep out the infection/biofilm.

He doesn't use the common microdebrider technique to "drill out" your sinuses. He prefers to use a balloon, because it leaves the hairs and tissue intact while widening the openings into the sinuses.

It makes sense that I should experience a significant improvement once the body burden of chronic sinus infections is removed, and this guy seems like he might be able to make that happen!

Good luck TJ! Please tell us how it went.

 

[TJ_Fitz]

I'm going in for the procedure tomorrow. He'll be doing in right in his office because no general anesthetic is required. Lots of mixed feelings right now: on the one hand, I'm excited at the possibility for recovery this offers, but on the other, worried that it will just be another thing that promises big but delivers small.

 

[TJ_Fitz]

Surgery went very well! I have very little pain today, and pretty good amount of energy.

My CT scans didn't show that my maxillary sinuses were filled (as is often the case in fungal sinusitis), but when the doctor opened up the passage to the left one, pus and mucus immediately came out, enough that he stopped working to suction it out. I smelled bad. I think more came out on the right side, too. The passages to both left and right were blocked by scar tissue, so that stuff could have been festering in my sinuses for decades. ?

I don't know if sinus problems are my core issue, but I have no doubt that I'm going to see some major improvements in the near future by virtue of clearing this toxic sludge out of my body!

 

[TJ_Fitz]

Post-surgery has been a mixed bag, but I'm improving. I started methylprednisolone on the Thursday before the surgery, and continued on it (tapering down) through the Friday following the surgery, with my last dose being 2 mg. Saturday was miserable. Sunday was about the same, enough so that I called in a refill on the methylprednisolone and took another 2 mg that afternoon. I felt very jittery within 2 hours of taking it. I took another 2 mg dose on Monday morning, and had the jitters again most of the day, so I skipped it today.

I didn't feel great when I got up today, but I walked 1.64 miles in 34 minutes at an average HR of 106 bpm. So I was doing better than I felt! I just got my Fitbit on Sunday so I don't have a baseline from before the surgery, but this seems like a good performance for someone with mild/moderate ME.

 

[TJ_Fitz]

I didn't feel great when I got up today, but I walked 1.64 miles in 34 minutes at an average HR of 106 bpm.

Yeah, that was too much, had some PEM today! I think 106 bpm is closer to what my max should be, rather than my average.