Embolisation Consultation 😬

I had a phone consultation with Mr McConachie today. He told me I also have an aneurysm which I didn’t know until now. He thinks it’s worth treating both during the same embolisation.

Says he will get me in before christmas.

Felling a little shocked. 5-10% risk of complications or death. High flow pressure of AVM has caused the aneurysm but I suspect you’ll know that.

Brain spinning a bit…

Dr McConachie was my doc. I’m confident he knows what he’s doing. It’s the same treatment for both: he’ll fill the aneurysm with glue or coils or other embolic material to render it safe.

I don’t remember what my percentages were. I can’t say they felt “low”. 5-10% chance of complications is not so bad but I agree that if “death” was in the same percentages (or on its own with 5%-10%) then that feels a bit high.

I’ve just dug out my consent form and he gave me 5% risk of complications or death but I didn’t have an aneurysm, so maybe the risk is similar with each (same procedure used = similar risk) and he’s adding the two together. However, part of the risk is that of threading the catheter through without causing a tear in the artery wall, so that risk is mostly reduced by doing both in the same procedure (only one thread through most of the way) hence the range of 5-10, maybe.

Pre Christmas is pretty quick.

The key thing I decided was “do I think I need this operation or not?” and “do I trust him?” For me, the answer was “yes” both times but you need to decide what your criteria are and then whether you’re comfortable to go with this plan or seek a different plan.

It’s not easy. But there are plenty of others who’ve been through the same sh*t and come out smelling fine.

It’s a good thing to have had the consult.

Consider writing this in the public space, or I can move this to an open thread if you like.

Best wishes,

Richard

(I’ve changed this post slightly).

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A bit of evidence that he leads some of this stuff…

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Thank you Richard. Your response and your is helpful, the article interesting and reassuring.

Yes, if you don’t mind, put our communication out there… see what happens.

Yes, he spoke of coils for the anuerysm and onyx for the AVM.

Had a decent sleep considering. But random “weirdness” this morning… everything feels like film dialogue. Definitely stress related I think. I feel a nap coming on. Hope you all have a good weekend.

It’s definitely a challenge we never thought we’d have. Just get your mind round it. I think we all need to rationalise these things in our minds and that takes a little time.

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It will never be an easy pill to swallow - I’m still working on it & my embolization was months back

Sounds like a good MD with a solid reputation < this meant a lot to me, when I was just starting to go through this

The procedures seem like today’s first line of defense. A coil in the aneurysm & to fill the AVM with a filler(Onyx)

I got to skip the coil since mine ruptured & didn’t form an aneurysm

All I can say is - try to rationalize it, maybe some do better with this than others. . . If I didn’t hemorrhage before officially being diagnosed with an AVM, I have no clue what I would have done

GL!

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Thanks Mike for your GL and experience.

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I think @DickD said it best

What I thought was do I need this? Yes. Do I trust the doc? Yes. Then I knew the answer and that’s the hardest part

Hoping it goes well for you. It’s scary I know

Because of location, I had a 50% of going blind and 8-12% of bad complications or death. I had zero complications in the end luckily.

I don’t know where exactly they get the % from but just remember that I think they include “any” complications to be honest in those figures, we just focus on the really bad ones mentally and forget the complications might be “minor” compared

Best of luck and hope it all works out for you best it can :slight_smile:

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My vision is at risk too. You’re right of course @AlwaysCurious; we focus on the stuff that horrifies us most. I’m a right leg amputee and I’m afraid of losing movement in my left side. It’d make life that bit more tricky.

All this helps in pursuit of an informed decision. Thank you.

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My amputation is a result of bone cancer as an 18 year old. I’m not unused to making life-altering decisions but the brain :eyes: The stakes are so darn high. You all know that already :upside_down_face:

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Hoping for the best for you:)

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Yeah the stakes are high. There are Wada tests though that can simulate the effects of embolization before you do the procedure.

Hi rafarataneneces (wow!)

Wada tests? Would you expand? :slight_smile:

Before my brain surgeries in 1990, I spoke w/my brain surgeon, Dr. Robert Spetler. He DID warn me that the risk WAS there, like strokes, coma, death etc, but I was SO READY to get it DONE!!!

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Sounds as though you were relieved @BoxBarge. x Are you still? Did your surgery take care of your symptoms? And what were they?

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I am not cured 100%, but almost! Before my major brain surgeries, I think I got 2 grand mal seizures a month from 18 years old until 29 years old. At 29, when I got the brain surgeries done, in the last 30 YEARS, I have had only 2 very mild seizures. I always call this my 2ND LIFE!!

Sorry for so late getting back to you, but I am such a slacker getting my emails done on time. My life is always busy in pretty good ways.
Lisa

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One more Blessing: Before my brain surgeries, I used to have major migraine headaches almost every day for over decade! Now, though, I do not even remember if I have a headache in the last 30 DECADES after my brain surgeries!!

Sincerely,
Lisa A. Stuckel