Strange symptoms? Or a weird coincidence?

Symptoms & Treatment
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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.

TJ

Hey all,

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.

Major questions:

  1. Have any of you ever heard of a TBI causing or making gastro symptoms worse?
  2. have you or anyone you know ever heard of a link between an AVM and these symptoms?
  3. 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?

Thanks all,

TJ

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Hey TJ, sorry for the trouble you’re having! I had my appendix, gallbladder, and part of my small intestine taken out in subsequent surgeries. These were all taken to alleviate abdominal cramping and severity of pain. After that was done, I didn’t have the problem until scar tissue wrapped around the shunt tube I had in my abdomen. As you might imagine I was on colestid for a number of years to regulate the bile build up. When I moved from Alabama to Virginia, my new gastroenterologist said I did not need to take colestid and so I’m off that drug.

My point being, be sure to ask the doctors about the medicines you’re on and I would suggest seeing an internest for your regular doctor as they will be trained as to the interrelationship between medicines and treatments from a variety of fields. Blessings as you continue!

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Hey TJ,
I seem to be writing this line a bit lately and I know that you know it but I have to say it…
“I am not a Dr…” but I’ll try and answer your questions as best I can with the knowledge I have.

None of that sounds very good at all.
Candida is notoriously difficult to treat. It can develop a resistance to Flucanazole, especially with repeated flares. Combine with that your paralysed vocal cords, an auto immune condition, polyps and TBI and you’ve got yourself the perfect recipe for a never ending storm.

I tend to agree with your wife in that it may not be directly related to your AVM, BUT it must all add up to be a contributing factor. Being that your swallowing is altered due to the AVM and related surgeries, there would be areas that would be the perfect breeding environment for the infection to multiply. I do agree with your wife on treating it, even if that’s only to keep the infection at a ‘managable’ level, at least until you get to see an appropriate dr (if there is such a thing) or some one such as a infectious disease specialist.

“Have any of you ever heard of a TBI causing or making gastro symptoms worse?”
Yes, absolutely. I have had to work with TBI patients whose injuries have had a profound impact on their gastro system. Some have had required ‘modified diets’ ie liquid diets and low fibre diets. Some who have had changes with insulin production due to their TBI.

“have you or anyone you know ever heard of a link between an AVM and these symptoms?”
Not specifically for AVM, but for TBI’s, yes. Our brain’s control EVERYTHING in our bodies and what can be considered a minor change in the brain can sometimes have a profound impact. As I know I’ve said before, when it comes to the brain it is not a simple case of A + B = C, but rather A+BxC/D-E√ F… there can be just so many variables and that can often mean that the straight line between ‘A + B’ that the medicos like, just isn’t possible. To that end I think it can be extremely beneficial if you can find a medical team who are prepared to look outside of the square, outside of the ‘normal’ treatments and look at things in a more wholistic manner, which I’d suggest in your case is a must. I say ‘medical team’ because often in complex cases, having solely one specialist managing it all can miss anything outside of their specialisation. A team approach can help minimise this.

“They both appear to be difficult to get rid of - any wisdom on ideas to talk to my doctor about?”
I certainly cannot think of anything else specifically. The only thing that ‘may’ be of assistance would be to have a physician, a medical investigator, take on the case rather than a pcp. PCP’s can be excellent for your normal, everyday, ‘run of the mill’ type conditions. Your situation is far from any of those and due to this having someone to collate and examine all of the reports, make referrals to specialists and consider the whole situation as a whole rather than as individual fields maybe advantageous.

Merl from the Moderator Support Team

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TJ,

Like the other day I was saying I remember your Sep 2017 post that set out your issues and I read those and thought “Oh, what on earth can I say to help there?” Today you land this.

Often enough I chip into conversations and then Merl says “I agree with Dick”.

So today, I agree with Merl and @randombeggar. I agree with these guys a lot. I just don’t always say it out loud. I’ve no idea about the things you’re describing but I’m going to throw my support behind both guys.

Like you say, it seems unreasonable not to link these things in some way. What was in my mind was what Merl said about a semi-paralysed oesophagus not shuffling food etc through properly and therefore more susceptible to infection, etc.

We know Merl is a TBI member, so his understanding on the TBI link is really helpful. So I think your AVM or surgeries have led to in effect a TBI and it is that which is driving some of what you’ve got.

If your AVM or treatments have impacted your immune system, then that would fit, too.

Virtual hug or handshake from this side of the pond… whichever you’re most comfortable with!

Richard

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Thanks, you all are rock stars in my book.

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Hey Tj,

I know this has nothing to do with any symptoms of that type, but I know in some way what you’re going through. I seem to have a list of 100 things wrong with me other than my AVM- a hand and feet deformity/pain that no one is able to figure out, degenerating spine discs, and a possible we-don’t-know-what-it-is immune system issue and probably more I’m seeming to forget.

Some of these problems I was born with, and others have developed over the years. I’m only 23 and any time I get a new doctor they’re shocked at how “defective” (as my family likes to call it) I am. When I list everything that is going on, or when something new pops up, I ALWAYS wonder if it’s related to my AVM. And after research the answer is always no. It’s weird, right? How can this many unrelated things be wrong with a person? Aren’t I already dealing with enough?

I teared up reading your post. I’m so sorry you’re going through even more now and I sure do hope you get to the bottom of everything and that you recover soon.

Take care of yourself, please! Wish I could give you a hug.
-Em

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TJ,
I’m not sure if this information will help, but it’s worth asking your doctor about. My grandfather had the thrush in his esophagus. Several doctors tried to treat to no avail. Someone suggested their doctor and he went as a last resort. I’m not sure of any dosages, but I do know this doctor prescribed Nystatin and it worked for my grandfather. I hope you find a doctor that can give you relief.

Also, I’m deeply grateful you shared your story. You gave me hope for my daughter who was recently diagnosed with an AVM. She is 28 with three girls under the age of 6. I stay very concerned because she’s been told she could have another stroke even within the first year of this one. She’s opted against the surgery because her neuro said they wouldn’t even know if they could do the glue until they got in there because her AVM is deep in between the two hemispheres and hard to get to. She’s afraid to try the surgery because of the risk, and because when they did her angiogram it caused four additional strokes. She said she was beginning to feel normal again after her stroke but has never felt the same since her angiogram. I found comfort that you are here sharing your story that began in 1978. I hope with all my heart you get relief.
Sincerely,
TAP

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