I'm still here!

Hey All,

So, here’s the reason I’ve been quiet lately. The first week of January I started getting significantly more confused (more than normal that is) and after some communication with my neuro docs, decided that it was time for an angiogram to see what was causing it. The doctor said that there was a “chance” that we might do the angiogram and based on the results, do an embolization or two as well.

Well, it turns out that was what they wanted to do - so we ended up with a substantial embolization that essentially shut down all of the blood that was going in the wrong places on my left side. Very productive. As my doc told me later, “we put a LOT of glue in your head…” The side effects of the glue are going to take a while… But he felt very good about what we accomplished and felt it would dramatically reduce further issues. This is good.

The last two weeks have been very confusing - my world has been very small - lots of things I can’t do at this point. But at the same time, a lot of problems solved. So, we proceed one step at a time in faith that Someone has a bigger plan than we do.

I’ve got some questions I’d love to know if any of you have had answers to these from anyone you work with on this stuff…

  1. I’ve had tremor issues with my left hand and wrist for years but only since this last procedure with my right hand. Does anyone have experience with anything that counteracts that? I wear a brace on my left wrist pretty much non-stop but just wondered?
  2. I’m not as skinny as I should be (probably 30 + lbs) and I read somewhere that AVM patients who lose weight by moderate weight loss through walking for exercise are much more inclined to see it help the rest of their health as well as losing weight? Especially nerve issues relating to their AVM react much more positively to that type of weight loss than many others?
  3. Eyeglass prescriptions - recently (months) my prescription seems to change 4 to 7 times a week. Any ideas on why or what to do about it?

If you had one piece of advice/wisdom etc. that you’d share with a younger version of you or me, what would you say?

I have to say that when I started this journey and when I first met this group I didn’t really think it would be that big of a deal but you guys are great. 43 years ago, I was this young confused guy who had no clue what was going on. The way everyone reaches out to help others is really really good. So even if you only reach out to someone once a month or once a year, keep it up, it makes a difference.

Take care and keep in touch,

TJ

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Hey TJ great to hear from you, and sounds like some progress being made for sure. I can comment of the exercise part. When my AVM decided to show, I was fairly heavy but quite active and lifting pretty heavy weights regularly. Boom, AVM. I was allowed to walk only when out of the hospital, so I started walking. Some hays upwards of 15 miles. As I was allowed to do ore, I started running, cycling and lifting lighter weights. I’m about 25 pounds lighter now. The biking was really my happy place for a long time. It must have had my heart rate and blood pressure in the perfect place, add the breeze in the face and I felt “normal” for a while!

I still love it all today! So happy to hear from you! Take Care, John.

TJ,

Welcome back! I’m sorry you’re going through the mill again but I’ve thought of a couple of possible ideas for you.

Regarding the weight loss, I’m in exactly the same position as you: plenty to lose and walking is definitely where it starts at. So I’m getting out of the house a bit more than I have through other parts of the winter (we’ve been a bit more lucky with the weather recently) so yes, walking is good. If I could be bothered to work out how to get the Fitbit thing working we could probably track each others progress. If you think that would help, I’ll have to go and look for it!

As the weather gets better, I’m planning to get into cycling.

Glasses prescription. I know I’ve mentioned this before but straight after my embolisation and again after the angiogram, I got scintillating scotomas going on in my sight. They tended to last about 20 minutes before resolving but when present, just blurred out an amount of sight. I’m just wondering if you’re actually getting differences in focus or whether you’ve got a bit of interference from scotomas going on. I’m pretty sure last time you were convinced it was a focussing issue but, hey, I thought I’d think it out loud again.

If you’ve got changes in focus, I’d think that could be to do with changes in pressure: maybe intracranial pressure? I don’t know, I’m not a doctor. But I’m sure there’s quite a lot of calming down to do in your head.

It’s really good to hear from you.

I’m sure you must be approaching a certain density of glue where you get superpowers? I hope so!

Lots of love,

Richard

Hey TJ
Great to hear from you again.
I’ll try to share my experiences in regard to your questions.

  1. The tremors: I get those too, but for me they seem intermittent. At times I don’t even notice them, but others do. There doesn’t seem to be any pattern for me and although I’ve spoken to the neuros regarding the shakes, they’ve put it back on me. ‘You’re just stressed…’ or ‘It’s a nervous twitch…’ or it’s diet or it’s medication or it’s anything else they can point at. But no real answers.

  2. Weight: Well, I’m the opposite, I’m skinnier than I should be (skinnier than I was anyway). My appetite which wasn’t great in the first place has up and vanished. I can sometimes get to mid afternoon and wonder why I feel so yuck… …DOH, I haven’t eaten. I could take your 30 + lbs and I’d still be less than the recommended weight. I have medications which are to be taken with food, so I MUST eat prior or my guts burns something horrible. The other thing I use which is an appetite stimulant is medicinal cannabis. It gives me ‘The Munchies’ and again I’ve gotta eat.

  3. Eyes. My eyes seem to be my brains barometer. My eyes ache from behind the eyeball and this can affect my focus. Again I’ve spoken to the medicos in regard to this but without any great answers. I wear glasses and have done for years, the last time I was tested they changed the prescription and I went from bad to bloody terrible. They said "It may just take time to adjust to the new lenses…’ They decided to give me a graduated lens, which I believe contributed to my pain issues as my neck needs to be in the right position to focus with the new lenses but that is often the wrong position to alleviate the neck tension. I find that I need to often walk away from the computer, where my focus is pretty much fixed at the same distance, go outside and look around at various things at varying distances. I requested that they swap the graduated lens for a normal lens, which they did.

Now, I must also agree with DickD in regard to intercranial pressures. My ICP’s are a mess, they’re up, they’re down and OHH BOY, the effects can be nasty. The neuro’s sent me for a scan and identified that when I’m laying down there is very little CSF flow, and their answer ‘Well, don’t laydown for too long…’ :astonished: What sort of an answer is THAT??? :face_with_diagonal_mouth: And although it’s been denied by the medicos I also find the the atmospheric pressure also plays a role. When the weather gets heavy, so does my head.

Merl from the Modsupport Team

Hi TJ,
I don’t have any experience with the issues you mention, but Flint Rehab had a message about tremor in my inbox yesterday. It might be fate, so here’s the link just in case it’s helpful.

Jill

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Hi TJ
Thought i hadn’t seen you for a while, all the things you mention are pretty much what we all seem to suffer from in varying degrees.
The tremor is one i can relate to, my wife notices it more than i do but there doesn’t appear to be a trigger for it, it just happens! The eye thing, well i’m sick of going to the opticians for an eye check then they say my eyes are ok for my age - if thats the case then why cant i read for any length of time? They say its tiredness - what mid morning ? Then the weight thing i can say i think its true to lose a few pounds would be beneficial, i am well overweight but have started cycling again after about 4 or 5 years if not and i feel great when i’m on my bike - it wasn’t always like that, when i first went back on it it nearly killed me! But with perseverance it is going in the right direction!
So keep on in there and i am certain things will be better - maybe not the same as before but better.
Also have you moved into your condo yet and if so has life improved for you, no acres of grass etc
Peace be with you
Andy

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Andy,

Thanks! We have been in the condo about 8 months now. I am so glad that I don’t have to spend hours on a mower and shoveling and all of that.

I just got a recumbent bike in August - which means I had about a month and a half before it got to the point that the weather was not conducive to biking - at least not for those of us who aren’t die hard bikers yet. So I’m looking forward to March and April where I can do that more…

Some things are good, some things are stable and some are stable and not so good - and some of them are a roller coaster.

Thanks for asking and thanks for remembering…

TJ

I ended up Epileptic with three embolizations.
So I removed the AVM
Neurosurgeon said they used A LOT of glue
Interventional radiologist said they didn’t close the AVM
Other doctor said surgery removed a lot of scar tissue
So embolization has its consequences

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So who’se going to design t-shirts that play off the “I’ve got glue in my head watch out” super powers? I can’t think of something funny, but I’d buy a shirt, thats for sure…

TJ

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I think first we have to get you a good name.

“Gluey” isn’t doing it for me.

“Superglue” is misleading.

“Supergluey” isn’t working either.

We need a great name that you’ll like. One that’ll stick :rofl:

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It’s comforting to read that someone else has this specific pain. When my eyes start hurting like this I have to go home and call it a day.

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I got rid of my glue with surgery

Doctor said too much glue is bad for the brain

Apparently the doctor put so much glue there it was not a good thing even during seizure they couldn’t see if I had hemorrhage or not but I think the other problem is he didn’t embolized enough apparently he left 1 CM not embolized.

I think my AVM is just right in a bad area if the brain where focal seizures start

After removal surgery I was told it irritates but with time it doesn’t irritate and scar tissue will always be there I’ve been told I have regular scar tissue

No more tissue than other people no less tissue than other people with AVM removals

So hopefully I’m on my way to “normal” but that might take a few years m. I am terrified of driving I think doctors don’t fully understand why seizures happen they don’t have good machines yet

They say functional MRI might give them a clue :man_detective: 10 years from now when more studies are done

For now I have 72 hours EEG every 3 months and we will gather data to see if the abnormal waves hopefully reduce

If they do that means my brain is healing from brain surgery