(Note from TJV - this was originally going to be a comment on @pamr7777’s post but it got too lengthy - my comment not her post) so I took it into a separate post)
Please read Pam’s post and the comments on there - lots of wisdom there.
Here goes…
Pam and all,
This sounds like the 1st verse to my second verse this year. Let me attempt to explain. Been on disability for 3 years because of an AVM brain surgery that went well but screwed up other things. Risk of a brain bleed is way down. Speech, hearing, vision,… (insert more) are all messed up. Not completely but substantially.
Woke up on February 8 and my daughter (college age - online school) said she couldn’t understand anything I was saying - couldn’t understand the words and couldn’t understand the thoughts behind the words. Called my wife, got her out of work in the Neonatal Intensive Care Unit and she brought me to the hospital. I don’t remember anything for the next 19 days.
That is the most #ffn weird feeling to know that you were awake, talking to people, and have no memory of it for 19 days. Apparently, while I had no memory, I also had no headaches. Let me say that again, while I had no memory, I had no headaches. For 19 days out of the last three years, I have not had headaches, and I missed them!! Relief from the headaches came, apparently, I enjoyed them, but I don’t remember them. Life can be a cruel joke sometimes…
Back to the story - we’re trying to figure out what caused the confusion, the delirium, and all of that and it doesn’t fit normal “events” (aka stroke, etc.) and they did tests and scans and verified that it was not a brain bleed. So then what?
Apparently, it is possible for an AVM to cause those kinds of symptoms. Let me explain - I guess that your veins are smaller than your arteries and normally that’s just fine. It gives your system time to get the oxygen out of the blood so your body can use it before the blood goes back to your heart to get more oxygen. Well, with an AVM, that doesn’t always happen - and sometimes it doesn’t happen at all which puts additional pressure on your veins and also on your nerves in those areas.
It’s that increase in pressure that can cause increased problems with nerves, with hearing, vision, cognitive ability, memory, speech, and a whole bunch more depending on what nerves and blood vessels are impacted.
In my particular case, they went in and did a number of embolizations to block some of the routes that were causing that increase in pressure and routed the blood to other blood vessels that didn’t have the same pressure issues.
They did the embolizations on two separate days (back to back) so they could block as much as possible. The doctor feels it was very successful from that standpoint. However, two days of general anesthesia in a row really kicked my entire system out of whack for a good long length of time. I’ve never had surgery two days in a row and frankly, I wouldn’t recommend it.
So, where does that leave me? Some thoughts…
- It’s possible to lose a substantial amount of your executive function ability and then gain most of that back. Whether it will all come back remains to be seen. I was never tested for that before, but after I “woke up” I was tested for executive dysfunction and tested at moderately impaired. That was scary.
2 1/2 weeks later, which was after the embolizations and the rerouting of pressure points etc., they did the same thing and I tested at minimally impaired. That’s a substantial improvement. They reminded me numerous times that what they did with the embolizations will reroute the blood flow and will take a substantial amount of time to settle out. It has been 16 days since surgery and we’re making progress but I’d call it “baby steps.”
I was originally going to post this as a comment on Pam’s post, however it got really long so I’m going to make it a separate post. But @pamr7777, if you don’t remember any more of my saga, remember that you are not the only one who had those type of speech symptoms. I stand with you on that.
One other thought before I sign off for now. As I was beginning my “slide” into the dark side as I call it, two people on here noticed that my writing didn’t seem “normal” for me. If you ever see that (and this goes for all of us) where one of your friends on here is writing but not making sense or not sounding like themselves, speak up. Say something to them, say something to one of the moderators and bring it to their attention. It just might make their recovery from it a lot easier.
Whew, “War and Peace” Volume 1 is complete. As always, questions, comments, advice or even just a local weather forecast are always welcome in the comments.
More to come - just not quite yet. In addition to all of these medical challenges, we’re moving in about 3 weeks. So, life is not boring.
Cheers,
TJV