So hey, I had written this earlier this afternoon and it truly represents how I felt at that point.
But, I’ve had a long conversation with my wife about this and she persuaded me of a couple of things…
I don’t have a compromised immune system, I have a compromised respiratory system
30 to 50% of people have polyps. I got the test and I’m in the 30 to 50% part. I was more wiped out than I thought I was and wasn’t looking at things the way I should.
I debated about taking this down, but I decided that I’d keep it up - because it’s real and if one person can feel even a little better by hearing my story, then that’s a good thing.
So here it is.
I hope you’re all surviving okay and have gotten used to being at home. Between my personal symptoms, my compromised breathing due to AVM damage and other things, I live a very small world in person. Fortunately not so small digitally.
I was reading on one of the newest posts (and I’m sorry I don’t remember which one or where - my brain is bad for that. There was a passing reference to strange symptoms after a TBI caused by an AVM. I have one of those. I’ve had the AVM since 1978, the strange symptoms just since the surgery/embolization that took place in my brain and screwed up a lot of things. So here’s the story inside the story…
Approximately 1 1/2 yrs. post-op, I had surgery to remove the largest case of thrush the laryngologist at U of M has ever seen. It was more in my trachea and around my vocal cords (remember, left vocal cord, left half of trachea, esophagus, are all paralyzed and without any feelings. Trust me, I know, that surgery, they spent an hour and a half basically scraping the stuff off my throat and it didn’t hurt. I then spent 12 months on Flucanazole and everything seemed fine.
About 6 weeks ago, I had blood work done (routine med monitoring) and they discovered that my hemoglobin was dropping quite precipitously (my English professor would love that word. I mean like from 13 to 10 (in 2 years) and 10 to 8 (in 9 months.)
So yesterday we paid a visit to the hospital and they stuck two different tubes in two different… okay, enough said about that. And they found out the following:
- I have thrush again and this time, rather than being in the mouth and throat, it’s in the esophagus. From reading on Mayo Clinic’s website and a couple of other reputable ones, esophageal thrush is a bit nastier than when it stays up higher in the system. Tests got done yesterday afternoon but haven’t heard anything more yet. Oh and according to Mayo, it is very common for people with severe auto immune system issues to have Thrush in the Esophagus.
- From the other side, they found 36 polyps. No, that’s not a typo. The doctor said he doesn’t keep records but he’s pretty sure I’m at lease in the top 5 of what he’s ever seen.
So, here’s my challenge right now:
- we don’t have any biopsies back yet, but my wife (the RN) seems to be of the mind that these are not related to anything else that I’ve got going on, they aren’t related to the AVM and we just have to treat them like anyone else would.
- I, on the more conservative, more semi-paranoid side, think that it’s too big of a coincidence for it to actually be a coincidence. What are the odds that I would get these really weird side “things” going on at the same time that we’re trying to move forward on some other things? And what are the chances that the thrush comes back three months after stopping Flucanazole and comes back stronger and potentially more dangerous? Oh and it’s very common for develop faster and more often on people with compromised immune systems.
- 36 polyps? How in the heck does that happen? From what I read on the NIH site, polyps often grow more and more rapidly on someone with a compromised immune system.
And then, today I overheard a conversation on here that brought up the possibility of a TBI being a leading indicator or an influencer of either Thrush or polyps. While the last thing I want is more medical crap going on, I also don’t want to look, 5 to 10 years from now and say, "if I had done this or done that, then I could have had 5 more years or something like that.
- Have any of you ever heard of a TBI causing or making gastro symptoms worse?
- have you or anyone you know ever heard of a link between an AVM and these symptoms?
- They both appear to be difficult to get rid of - any wisdom on ideas to talk to my doctor about?
Any other questions I should ask that I haven’t remembered to yet?