AVM Survivors Network

Saturday Morning Cup of Coffee


At least in my part of the country, it’s Saturday morning. I want to try something. Let’s imagine that we’re sitting down for a cup of coffee and a cinnamon roll. You say to me, “So, TJ how’s the past week gone for you?”

And I would say, well it’s been an up and down week, but with more downs than ups. You remember the surgery I had 2 weeks ago yesterday? I think that I have heard it said that if you’ve had brain surgery - whether for an AVM or for something else - there is a significant chance that general anesthesia is going to make you feel like you got run over by a cement truck. I have been unbelievably tired these last two weeks. I’ve had pretty major procedures in the past and they have not made me this tired. Yeah, yeah, you’re right I was a lot younger then.

Hey, here’s another thing that my doctor told me - I should expect to see my hearing (see my hearing - I’m sorry to my English teachers who taught me better) to get worse, predominantly because the noise in my head will go way up. This too is supposed to be a short term effect - and I hope he’s right.

We go back to the University of Michigan on Tuesday to see a neuro opthomologist for an evaluation of what is going on with my eyes. I was able to get in with him way faster than expected (and faster than the people in Grand Rapids could do it). I think a large part of it is because I know a guy (actually it’s more than know - we are good friends). That guy’s wife is a surgery nurse for the otolaryngology clinic at U of M. She talked to one of the partners and he sent me to my laryngologist - one of their top laryngology guys. When I asked him about a neuro optho referral, he said, “No problem, you need to see Dr. T, he’s the best.” And just like that, we were in to see one of the best Neuro orthos in Michigan.

Do you know anyone who has had this kind of an evaluation done? I’ve been told to expect a 3 to 4 hour appt.

In other news - we are setting up a pharmacy review of all of the drugs that I’m taking. I think right now it’s 13 prescriptions and 3 OTC meds. Two reasons we asked for it - first was because we wanted to make sure that the meds I’m taking aren’t even partly responsible for the cognitive challenges I am currently having. Secondly, we want to make sure that there aren’t any other side effects the drugs might have. I was pleasantly surprised to hear that my insurance company contracts with another healthcare organization and offers it at no cost to me.

We had requested that they do another CT or Ultrasound or something to try to figure out what is rattling in there. (Okay, bad joke, sorry.)

My primary care doc, through his medical assistant who called me, said, “Dr. S said he won’t order one and your insurance probably won’t pay for one because all its going to show is that you have brain damage and that won’t change your course of treatment.” I got off the phone and just kind of sat there a bit stunned. My main doctor, the guy who is supposed to be the primary care person - just said , “TJ, you’re brain damaged, deal with it.”

Needless to say, we are not going to just deal with it until either a neuro psychiatrist or a neuro psychologist says, “TJ, there is nothing else we can do.”

At which point we start looking at alternative mid/body healing to see if we can get my head to at least move the needle towards the “less pain” area.

So, yeah, it’s no wonder my headache is worse. It’s no wonder that my voice is worse - yours would be too if they just went down your throat with essentially a microscopic vacuum. It’s no wonder my balance is off more than normal. I think my wife put her up to it, but my 26 year old (in year 3 of college and renting our basement) helped me put up a new mailbox (snow plow took out the other one). She and I were digging the hole for the new one and I was trying to do the “foot on top of the shovel to get it to dig farther” - you know what I mean right? My right foot slipped and down goes Dad. Fortunately all I have are a bruised ego and bruised backside.

And on that fine note and wonderful image (that I am not going to post pictures of), my coffee is cold, there’s one bite left of the cinnamon roll, so I better be on my way.

Let me know how you are doing when you get a chance…



TJ, you sure have had challenges, not to mention the “care” providers! Nice to hear you’re getting in a little sooner, no thanks to primary care. I always go with all the alternative therapies to compliment the medical side, things like frankincense aromatherapy. I truly believe there is a benefit, and that may be half the battle? In my mind…maybe that’s why it helps! Keep fighting the good fight my friend! Take Care, John.



Good morning! (Sunday morning here before I noticed your post).

I think the other thing that losing your balance sorting out the post box helps with is a real, physical demonstration that Dad isn’t as well as he used to be, which might help your family understand you a bit better. It’s difficult, when you have a wholly hidden thing, for people to get that you’re not 100%. You might say it often but I think it helps to see it as well. So your ego shouldn’t be bruised, your backside probably should but you should also have grown a little bit more understanding from others. Not just negatives.

The cinnamon roll sounds nice.

Raises cup of coffee (with no cinnamon roll) in a westerly direction. Cheers!


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