Thanks for sharing Joanna.
That will be interesting if I have those! My friend fainted during hers so I'm trying to be ready for surprises.
Take care,
I will try to breathe, good advice.
~gaahla
I only ever met one person who had an avm shrunken and not surgically removed. Could it be that this could allow a malformation to return?
My real name is Matt; its Matt Ramsey.
My AVM was not surgically removed. It was embolised with Onyx glue. I dont know if I am explaining it correctly but I will try. Embolisation prevents blood from flowing where it shouldn’t. It glues it up, so to speak. Some people never have a follow-up angiogram to make sure the AVM is gone. The angiogram is the gold standard for making sure it is gone. In some cases, MRIs don’t show the true picture. I believe that if it isn’t gone, it can grow back. Some Doctors do not believe this is true but this website tells a different story. I don’t really think Doctors know what is possible with AVMs because I think every AVM is unique. I will try to find the discussion link for you.
In the very top, right hand corner of this screen, type in the search Box: AVM regrowth or Can AVMs grow back? You will be able to view the past discussions regarding AVM regrowth.
I have had 5 angiograms so far and they are nothing to worry about at all so don't be afraid, they will give you a sedative to chill you out and and they have numbed the area if you can feel anything other than a pulling sensation tell them and they will numb it even more ( which does not sting this time) when having the dye put through I got a warm sensation in my face but it does not hurt and also saw the yellow splodges in my eyes these are perfectly normal I also had to have a 3d one done which was a little painful in my face and head but lasted only seconds. I did suffer with headaches afterwards and had to stay immobile for 6 hours but if you are having any after pain tell some one otherwise they don't know. if you experience any swelling / bulging from the wound site put strong pressure on it for 20 mins and it will stop and go down, but if you are in any doubt call the hospital. wishing you the best of luck you will be fine and will wonder why you got so nervous in the first place once its over. if it was that bad I wouldn't have had so many done and still have to have one every 9 months. will be thinking of ya xxxx
I, too, underwent an embolyzation prior to having lifesaving surgery; Dr. Peerless said, after he saved my life, that embolyzation was irrelevant; in that, he had to surreptitiously cut out a jillion vessels, despite what was believed to be true about my AVM…my surgery took 14 hours; it was scheduled for many fewer hours.
i had a angiogram for my brain AVM.
it was not bad just pressure in the groin area where they go thru and the dye they put in my brain felt funny like a warm rush i had no problems with it
do you still have a avm
Thanks Whispers.
Ya, I will be sure to let them know. I'm only worried because I'm prone to headaches already. I get them a lot & they're really bad---that's why I got the MRI in the 1st place. So, I'm dreading the likihood of onset.
But, maybe it will be nothing. Lots of people seem to have had no problems, at least the ones who are commenting. So, that's good.
Thanks again.
gaahla
yeah I still have one on the left side which is why i have to have the angiograms so often in between i have mri's and ct scans done but unless it starts to get bigger they are going to leave it of course they check the site where i had the bleed but fingers crossed that is all been delt with and wont cause any future problems.
Angiogram is the way to find out where your enemy (avm) is ... just stay calm and keep your eyes closed and make dreams .... Take care
i understand your worries about having an onset of headaches but the great thing about it is you will be in the hospital so they can give you some really great pain killers and would probably give you some to go home with cos sometimes paracetamol etc just does not cut it.
Wow! You beat me...I thought mine was long at 7 1/2 hours. I too had a massive amount of veins and arteries all mixed up together. How did you find out you had it? I woke up one morning hearing the blood pulsating in my left ear and pressure in my head. What kind of symptoms did you have?
How did it go? Sending good karma thoughts your way…
I’ve had 2 angiograms. The first was the worst b/c they looked at every possible vessel in my entire brain. Fortunately I was in neuro ICU at the time so had ample medical help to deal with the pain and seizure. The radiologist who did the second one (immediately prior to gamma knife for targeting) said it sounded like I may have had a microbleed during the first one. The second one was very uneventful and they even put in a clip so I could bend my leg after 1 hour instead of 6.
I am very allergic to the iodine based contrast dyes they have to use for angiograms so I have to premedicate with massive doses of steroids and antihistamines before anything that uses them, which also contributed to the complications I had during the first one.
Hope all went well and that they got some really good pictures so you don’t have to do it again for awhile!
Hi Gaahia - send me a message! I had 2 angiograms, so I can let you know anything you want!
thanks everyone for your words of wisdom and support!
i had the angio today and i'd say overall it went well.
they gave me some kind of sedative before, though, not much for pain but local numbing agent; which didn't matter during the procedure but after i was in some pain and wished they'd send me home with something pharmaceutical.
i also had a complication where the catheter scraped my neck artery and so they had to do an emergency something or other involving adding drugs to the solution. that felt incredibly weird like i was peeing inside my face. haha. and i saw the lightning that some others had mentioned. but then it was over quickly.
the doctor then seemed upset that i had moved and said it had caused the scrape in my neck artery, but, i didn't know what was going on. i wonder why they didn't strap my head in? they did strap in my legs. or dope me up. i have to take baby aspirins now for some reason that i can't remember having to do with the scrape.
anyways. i got to see the avm. it looks like sperms.
whether i'll get glue or the surgery is still to be determined.
but this angio doctor was more optimistic that the treatment would help with headaches than the first neurosurgeon was.
so, mostly good news.
having some headaches today now.
otherwise ok.
the leg seems ok.
thank you to everyone who sent prayers and energies!
xo
gaahla
Gaahia:
Its nice to hear from you as I have been wondering how you were doing. Sorry to hear about your neck scrape but you don’t seem too worried about it. Let us know which surgery option you decide.
God bless. Wendy
Thanks Wendy. Ya, I have no idea how important that scrape is. I've had some killer headaches today and I think I can still feel all the pee and dye in my face from the procedure but I'm hangin in there.
Thanks for checking in! It's sweet.
Hope you are well!
~gaahla
Hi Gaahla,
Thanks so much for asking this question. I am having my first angio next Thursday and had plenty of questions that only folks on this site could really answer. I had planned to write tonight, but I saw your posting first. Thanks-Kheli