Has It Really?

Has it really only been a month? Actually not even a month?

It’s July 15 today and my last embolization was June 17. In many ways it seems like it has been a lot longer than that - and I should be farther along than that.

But in other ways, I have to remind myself, it hasn’t even been 6 weeks yet. So, if I’m tired, no wait, that doesn’t describe it. If I am so incredibly fatigued that I can fall asleep three times while typing one sentence, then it’s obvious that I am still recovering.

What else am I dealing with? There are still some words that don’t come out the way I want them - at least not the first time. There are questions that I answer where the answer that comes out is different than what I meant. “No, no, that’s not what I meant, what I meant was…….” I’m pretty sure some of that is the fatigue, some of it is just my brain recovering yet.

I have to keep reminding myself that those things, right now, are SIGNIFICANTLY better or “less confused” than they were a month ago. That is a good thing. (Or at least a less bad thing.)

I only take my cane with me when we go “out” like shopping, to church or things like that. There’s maybe 5 to 10% of the time when my balance is wobbly enough to need to use the cane not to absolutely avoid falling but to avoid even the possibility of stumbling. Also, I’m “discovering” how many people will give someone with a cane a little extra space, a little extra help, just a small gesture of assistance but it’s nice to see.

I don’t remember whether they did any embolizations the first time they treated my AVM - back in 1978. I remember some of the major things from then, but not that. I do know that I haven’t had any of the “problem” that some of you have had with hair loss tied to your embolization(s).

Until now.

The embolizations in March left me with some patches on the back of my head where the hair was a lot thinner than it was otherwise. Now keep in mind, I’m a white male in his 50’s, my hair was thin already. It just got thinner and kind of uneven on the back of my head. As long as I kept it cut shorter, even shorter than I normally did, it was not really noticeable.

The embolizations in June - they didn’t seem to cause anything in terms of hair loss. At least not at first. Just the last few days, I’ve started to notice that the part of my hair between my ears in back is almost non-existent any more. There’s virtually no hair on that part, probably the bottom 2 inches or so. The part above that, it’s really really thin, but it’s there. (Side note, my daughter gave me a haircut when she was home for Father’s Day weekend. It doesn’t look like it has grown much if at all since then).

What’s it all mean? I don’t know, but I want to say one more thing about hair - I used the term “problem” in quotes before - because it wasn’t a problem for me, but it has been for others of you and I recognize that and I’m aware of that. I don’t remember who it was, but one of the first stories I read about hair loss on here was a female AVM survivor with gorgeous long black hair and it started coming out in clumps. I couldn’t imagine and still can’t imagine what that would be like. I’m tempted to shave all of mine off and the only thing that is really keeping me from doing that is that then I wouldn’t be able to tell if any more is “falling out.”

One last thing - after these last two embolizations, I had a spot, basically behind my right ear, where about half of it felt like it was a wound under a bandage that was painful if you bumped it and the other half was completely numb. About two weeks ago or so, over the course of a couple of days, it all moved up - the numb part got much smaller and the “sore” part got much less painful. In the last two days, the numb part has basically disappeared and the painful part went from the lower part behind my right ear to a significantly smaller part above and behind my right ear - and less painful.

YAY! Progress!

And I’m going to end it on a higher note. Hope all of you are doing well, hope that if any of you are dealing with substantial issues (or even just annoying ones) that you’ll share them with us so we can support each other.

And keep on keepin’ on……

TJ

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YAY! Progress! I love to see that, I’m hoping that forward stays forward! I sure appreciate reading your update, Ive been wondering since I haven’t seen you here for a bit. Take Care, John.

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Tom,

I logged in here today specifically to find out how you’re doing because I have been following conversations I’m already part of but have missed out on any new conversations, so need to catch up.

Your progress sounds good. I mean, I’ve had the tiniest fraction of “work done” compared with you and I noticed after my embolisation that I was a lot more tired than I used to be.

Example: up to Coronavirus I used to take my mum for a day trip to London for one of the BBC Proms concerts every year. Usually we’d do one or two visits per summer. It’s about a hundred miles there and a hundred miles back. We go, we park opposite the Royal Albert Hall, find a restaurant, eat, go to the concert about 7pm and get home about midnight.

I did this trip in 2017 and OMG it was exhausting. Utterly wasting. I said to mum “We might not be able to do this going forwards”. It was that bad.

Now, I can tell you that we have done it since then. I’m sure we went in 2018 and 2019. But these operations do take it out of you more than you think – even when you’ve only had no 1, not no’s 17 & 18.

The back of my head was very sore where I had some veins on the outside of my head that I think were glued up as well as those in the inside. The time frame that you’re talking about for the patch behind your ear feels similar to mine for that.

A month is honestly not very long.

The young lady you were thinking of re hair loss was @corrine. She had quite a time of it and finally broke and went for the shiny head finish (and a wig) until it started to come through more evenly. She wrote about her hair loss and we have kept it in the AVM 101 reference library.

I do like that you’ve found people being a bit more courteous. That’s a small bonus.

It’s really good to hear from you and it sounds like you’re doing pretty good. Keep on, dear sir, keep on.

Richard