First round Coil Onyx Embolization Update

Greetings all,
Had my 1st session yesterday. Lasted 6 hours from start to finish. 1st order of business was to coil off section prior to Onyx to prevent glue getting into artery. Then attacked multiple Occipital artery feeders. My Dr. said he was happy and considered it a success. He did say he was probably too conservative with the viscosity of Onyx and there were a couple of areas that he couldn’t get to as a result. I was ok with this because I felt he was protecting me & that is good thing.

I am doing remarkably well. Procedure started at 10:30am and ended at 4:30pm when I looked at clock 1st thing. I was elated to pass the neuro test in recovery. I think I could have went home at midnight if that was allowed. Wound up discharged at 9:30am. Only thing I really am not at baseline is the soreness at back of head were gluing and concentrated radiation took place. I wouldn’t even call it a headache. Just to be expected good chunk of soreness. Doc said that is due to shutting down blood flow to the muscles supplied by those feeders. And, of course the incision point. Other than that feel normal.

The worst parts (more like inconveniences) 1) very early eye burning and swollen eye lids. Dr said didnt get that but could be sulphur related from Onxy. Later it went away 2) had trouble clamping the artery this time so had to lay flat for 6 hrs. Had a lot of heartburn as result from fruit cup (mostly pineapple) I ate after procedure. That immediately went away when I got up to use bathroom after 6 hr mark went away 3) getting the catheter pulled out. No Fun!

I have at least 5 more to go minimum. I feel like I lasted Round 1 with Iron Mike Tyson in his prime. Came out a little bloody but ready for Round 2 and confidence is up. That and being on that Neuro ICU floor and hearing some of the nurse xovers well I shouldn’t really complain.

Next week I also see Hematologist to see if any clotting disorder may have caused the blocked sinus that likely created this big mess. One of ICU doctors did say pulsatile tinnitus has been a recent theme since Covid which was of interest. That caught my ear. I never felt like I had covid but who knows. Writing this just so others may benefit down the road. Cheers & will send any relevant updates as I continue down this journey. Steve A.

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Great update and sounds like you got through it very well indeed!

I definitely had the soreness but I assumed it was the external veins that I had being inflated; my doc said he filled those with glue. They were quite sore. I had a PHIL glue embolisation, so a different thing than the Onyx. I was in hospital for at least 3 days. However, it felt entirely gettable-throughable to me, so the idea that I might need a couple of approaches didn’t bother me at all. And I agree with you about the neuro ICU: there are some very poorly people in there: it’s very nice to come out feeling like you don’t really belong.

The catheter isn’t good, is it? For a different hospital visit, I had a nurse “kindly” remove my catheter like Indiana Jones getting his whip out! :face_with_peeking_eye: O.M.G. I’m sure she had a revenge against men thing going on.

Well done!

Richard

@ukengr93 Hi Steve so glad your first embolism went well. The first one is nerve racking to say the least.

One suggestion I have is to get a copy of your medical records from the surgery. Lots of times there is stuff in there that the dr thinks they told you but didn’t.

I had my DAVF form in 2011 after a CVST ( blood clot stroke ) 5 had formed in my brain and it’s common after you get blood clots in your brain you are more likely to get a DAVF

So when COVID shots were available they started to see more people getting blood clots in the brain . So my Stanford neuros and heart dr told me not to get the covid shot.

I don’t have any high risk issues and kept/ keep my public interaction to a minimum

Hope you continue to feel good

Angela

Thx for the words of wisdom. I did not get a COVID shot until after my seizure so I can’t place blame on the shot. I held off bc my sister who is a PT Zane required to get one early had a pulmonary edema after Moderna.

Lightning has struck me twice bc I lost my 6 year old daughter Paige in 2010 ultimately to liver failure. But in 2006 she suffered a spinal stroke during angiogram trying to find believe it or not a spinal fistula that gave her a spastic gait. I thought I buried the word fistula literally back then. So, this journey is all the more the mental challenge. Especially that initial angiogram.

A good story on her done by Cincy Childrens

https://youtu.be/7U_U4EjFaxE

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God bless your brother

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Well said, mine felt like a 12 round match up but - I just wouldn’t stay down

Darn hemorrhage. Lol

I really didn’t think I can go another round. But, when my angiogram came up five weeks later - I was ready to go for another match up

Thank u :pray: himself they achieved 100% occlusion on 1st round

Glad to hear you’re rolling with these massive punches

@ukengr93 Heather thank you for sharing your story about your beautiful daughter Paige-
I am so sorry for your loss. I know no words or time makes it better.
She looks like a truly joyful and wonderful spirit.

Sorry to hear about your sister as well.

Hugs Angela

I hope this comes out the right way.

I was just talking to Richard about a new inoperable diagnosis i received (not avm) and i said as down as i am, i must consider myself lucky, even though I’m fairly young, there are children with terrible issues and that makes me sad. So I’m not unlucky really. I need to look at myself as being lucky to get this far and realise it could be a lot worse

And then this thread came up with the link regarding your daughter

Thank you for posting that. That literally brought both happy and sad tears :slight_smile: . Happy as she looked like a lovely happy child with such caring friends and family. Sad because of the situation for her and your family I’m sorry

I hope all goes well with you. You certainly have the right attitude congratulations!

All the best

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