I Think I'm Crazy - Too

Support
1

(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

1 Like
2

Ohh TJ, what can I say… …It doesn’t rain… …but it pours
Speaking of which, as requested, one local weather report
:stuck_out_tongue_winking_eye:
Local Weather Forecast
Partly cloudy. Slight (20%) chance of a shower. Winds southeast to southwesterly 20 to 30 km/h. Overnight temperatures falling to between 12 and 15 with daytime temperatures reaching the low to mid 20s.

By the sounds of it the weather could be a bit easier to explain than the ups and downs of your journey. Just when you think, “…‘this’ is a form of ‘normality’…” along comes a train to knock you clean off of your tracks. We were definitely concern but it’s great to see you’re still here and baby steps or not, they’re still steps and that’s a plus.

Take the time you need TJ and if you need to chat just drop on by, we’re here at some point in the day.

Merl from the Modsupport Team

3

Oh my goodness, TJ, what a saga. But I must say, you are a gifted writer of sagas: it’s the subject matter and the personal experience that leave me aghast. You are just having trial after trial, aren’t you?

I second everything Merl said, with the exception of the weather: here, days are in the high teens, nights down in the single digits. The snow is gone,and apparently we are in for a rainy spell before long.

Thank you for sharing not only your experiences, but also your thoughts and reflections. Those are unique, insightful, and (as always) eloquent. Clearly, you aren’t losing your touch!

Seenie

PS Moving. Now there’s a traumatic experience! There must be a story …

4

News flash on the moving. My wife bought the condo while I was in the hospital. I’ve seen the outside and I’ve seen pictures, but I haven’t been in it.

After 36 years of marriage (well it will be 36 years in July), I trust her with way more than just the house/condo.

Seenie - it does my heart good to hear your compliments and it’s good to know I’m not losing my touch. I’m losing some of the speed but that’s okay.

And tomorrow is another day…

TJV

1 Like
5

@TJ127

Well, you sound a LOT better than on St Valentine’s Day and also a lot better than when you posted a week or so ago. I’ve only had one embolization ever and it took me 18 months to feel back to where I was beforehand, so two embos back-to-back (and are you up to no 16 or something overall?)
Ouch! it is going to take you a considerable time to feel “ok” so just take it a step at a time.

Is the condo instead of the old farmhouse or a bit of an extra hideaway somewhere? I’ve missed that bit of conversation somewhere.

It’s great to hear from you.

By the way, I’m sure I disagree with the “crazy” bit… but it probably depends on the scale that you’re using! I’m on the scale somewhere!

I concur with the warning that if people who know us recognise unusual behaviour, we should think to mention it out loud or do something active about it sooner rather than later. There was a fellow called Neil Astles in the UK who passed away yesterday, I think it was, from a CVST clot. His sister spoke out to encourage people that her brother had been a very unfortunate one-in-a-million person for whom the CVST was found too big and too late and that we should understand the risk associated with vaccines of all kinds and carry on getting vaccinated. Again, this reminded me that understanding what a CVST stroke is like and being able to say “hey, I feel really unwell” or “Neil seems really unwell” is the key to a better outcome with some of the challenges we all face in life. Angela has related her CVST story frequently but it has taken Alison Astles and her brother to persuade me to understand what one is.

Next time you’re acting a bit weird or go quiet a bit too long TJ, I’ll plan to nudge you a bit. If we save one life doing this or secure anyone a better outcome than otherwise, it’ll be a marvellous thing.

Keep on keeping on. Good to hear from you,

Richard

1 Like
6

Richard,

I think I was at 16 before the month of March. So now I’m at 18.

The old farm house is sold - we have been thinking about going condo for a while and my health issues along with being down to 1 kid at home has encouraged us to do it sooner rather than later.

The house has too many memories about the way my life used to be and the things I used to be able to do. We are both looking forward to turning a page and taking some pressure off. It will be a good thing.

Crazy is a continuum - everyone has some, some just have more than others.

Glad to hear you think I sound better - had a doctor’s appt yesterday (one week post discharge) and he said I was looking great. I almost asked him, “I think I look tired, I walk like I’m 80, did I look that bad before?”

But I’m not sure I want the answer…

TJV

1 Like
7

If it’s any consolation, I had issues with my prostate in the autumn and had to have a catheter in. I was walking like I was 90. Seriously.

You’re sounding really good. Normal you.

Sounds good to move to the condo. I understand the reasons and so it sounds like a new start.

If crazy is a scale, then we’re all on it somewhere.

8

Good to read you sagas TJ - by the way what is a condo, is it a flat as us in the uk would say?

9

Yeah, Andy, I think a flat and a condo are basically the same thing. It’s a “house” that is attached to the other units in the project (shared walls) and then rather than having to shovel snow, mow lawns, weed gardens, and all of that, you pay an association fee that covers that and you don’t have to do any of that any more. We are currently in a 120 year old farm house - and there is always something to do to keep that old of house in good shape plus we are on a lot that is about 3 times the normal size - it usually takes me 2 1/2 to 3 hours a week to mow.

I’m not going to have to do that any more - which sounded good before the sagas of 2021, It sounds even more good (better) now when I’m not back to what it was last fall (in terms of my health.

So, do you live very far away from @DickD ? I mean England’s not that big, is it? (Says the pretend obnoxious American). (Actually, I am American but I’m not obnoxious because, well, let’s keep politics out of here…

Keep in touch,

TJV

2 Likes
10

@DickD Just to chime in about the CVST- I have been very cautious about getting any of vaccines because I was worried about this happening. I had 5 bloods when I had my CVST stroke. The only way I can try to describe it and I have a very high pain threshold - to give you an example. I walked on a broken foot for a month before I mentioned that I thought I bruised it to my chiropractor who happened to work in a shared office with a foot dr…I have had 6 kidney stones and never gone to ER , I had a gall stone the size of a golf ball and my surgeon who has done almost 2k operations of them said it was the ugliest one he had ever done and would not let me keep or see it! He said he was going to show it to his students. He said my pain threshold was dangerous cause by the time I feel something it means surgery or worse…
So having a blood clot in your brain feels like your head is in a vice or an elephant is standing on your head. I even flew few times and my neck locked up and then I made my husband go get a neck brace then I drank a Guinness and I felt better :slight_smile: The really scary thing is all three vaccines are causing blood clots - The Johnson and Johnson one is causing CVST and Thrombocytopenia - one dr basically bled to death internally and they couldnt do anything, if you have Thrombocytopenia they cant give anticoagulants. I am thinking wtf are the long term effects of these vaccines? Then today they came out that they know the Pzifer doesnt work against the South African variant so if 99% survive I am not sure I am going to risk getting another CVST or bleeding my DAVF with a vaccine- These drugs are really not FDA approved…They are emergency approved not the same thing…

11

Hi Tj
I think DickD lives down south and i live in Leeds England- which is probably the crntre of the British isles we have smallish gardens and the lawns take about 15 mins with a hand mower, yours sounds like you have fields to mow!!
Any way take care and by for now

12

I’m further south than Andy. It’d take a couple of hours to get from my home to his.

And I’m nearer the centre of England – literally about as far from the sea as it’s possible to get – Andy’s nearer the centre of GB.

13

Hi DickD
You must be the midlands then or Derbyshire?

14

If you click on my “avatar” (the little green circle with a “D”) it says Leicester. So, yeah, further south than you (but not a southerner!!)