Hello Corrina going to tell you how I ended up having my surgeries and why you should have one. My AMV wasn’t discovered until it ruptured that day back in 2000. Of course I didn’t no what an AVM was at the time but also I was just 10 years old when this happened. When that bleed happened talk about a headache pain was so bad nocked me out and was in coma for two weeks. Its best you have the doctors do lots of scans to check on how they can do the surgery and what type of surgery to do. I don’t remember how many I had but it was a lot it was almost a routine. I no its probably frustrating to having all this at that age during college but its best. My injury from my bleed is short term memory so multitasking is a bit of a trick and college took a little longer than 4 years for me. Hope you find the right hospital and dock to go to. If you have any questions just ask.
Hi I was told in Feb 2016 I had a AVM , I had no bleeds or seizures, the only symptom I had was pulsitis tinnitus in my right ear. I was first referred to ENT who tried the sinuses route. it wasn’t sinus and they did a MRI scan and found the AVM. My options was to have surgery to remove it. Which I had done in May 2017, post surgery I have been fine but was a little fatigued and tired . I’m glad I made the decision to have elective surgery to remove it. No more AVM or tinnitus . I’m due a angiogram in a few months to check its completely gone. Btw I’ve had a angiogram before and they are fine and no big deal.
Hello Corrina
So glad you found this site. Welcome to the group.
The angiogram is the only 100% way for the doctors to know what to do for your avm.
It is strange to have it done but stay calm and you can always asked to be knocked out. If your blood pressure raises during the procedure they will do a main line IV- That is where they thread an iv in your neck to give you meds directly to bring your blood pressure down and I had to have it done and it hurt so bad I told the doctors either they knock me out or I was going to hit them.- They sedated me.
They will determine treatment 1) embolism which they can do right after the angio they can use medical glue, crushed onyx, or titanium coils. 2) gamma knife 3) or a craniotomy 4) or nothing.
Now when they do the angiogram they give you Iodine and radiation. For me I am deathly allergic to Iodine so I get steriods for a few days prior to surgery. Then after I feel terrible I am thinking its from the Iodine and radiation. You may get constitipated so have some miralax on hand before you have your angio
after my 1st angiogram/embolism -I had terrible headaches but I was still recovering from a massive stroke so I think this is not normal plus they were in my head for almost 8 hours.
If you wait a long time to get your angiogram you run the risk of it growing
some people are born with their avm and others like me had some sort of trauma. Mine was caused of my rare stroke (5 blood clots formed in my brain ) so the pressure from the blood clots blew out a major vein in my head and then the body tried to fix it by growing the avm (DAVF)
You want a super star neuro who all they do is avm’s. Search the list that is on here for where you live or travel to get the best doctor if you can.
I had a full freak out on here when I first learned about mine - We have all been there so please dont be afraid to ask anything here or to vent that is why we are here.
I am very glad I had my angiograms and embolisms. Mine is sealed - I still feel like someone is constantly pulling my hair but before I could not sleep and I was passing out all the time. Mine was making the blood flow go backwards.
Your groin is sore after the procedure and you spend at least one night in the hospital. After my last one I was so constitpated like for 10 days I think that is why I felt so bad and ended up spending about 3 weeks in bed.
You are young and recovery is always better when you are young. Please keep us updated
Hugs
Angela
Angela, thank you for responding to my post! What is embolism? And do you know if there is an option to do the angiogram without radiation
Hello @Corrina
The embolism is when the can make a dam of sorts to block the avm for growing. they do this through the same catheter procedure as the angiogram-
My doctor is Michael Marks he is the founder and head of neuro radiology - when I asked him how do they decide on what to use for the embolism. medical glue, onyx or coils he told me it was like art work it was his experienced which would help him decide based on mine what to use and he choose the medical glue and onyx - I did hear some popping in my brain for about 10 days after the 1st embolism.
you are knocked out for this part. The reason they keep you awake for the angiogram is to make sure that they have not touched something that would cause facial paralysis etc
I think the radiation is necessary to perform the angiogram but I could be wrong. I did not know about this - my doctor never mentioned it but I learned it from here before my 1st procedure and I did loose a bit of hair from the back of my head but this also happened when I had my stroke any brain stress seems to make my hair fall out- it did grow back - also my skin gets really super dry after the procedure so I found coconut oil cleared it up quicker than reg lotion
Pardon me for a tiny bit of detail. I think you’re both talking about an embolization, rather than an embolism. I think the former is a planned blocking of the artery; the latter is often used to mean an unplanned blockage.
So… if you go looking up terms on Google or in this site look for “embolization”. Less scary.
Richard
Hello Corrina,
Angiograms, at least the ones that I have had, are not as scary as they sound. The doctors will immobilize your leg (like strap it down and stuff) and give you a small dose of anastegia so that they can maneuver a very small camera up through your body to get photos of the AVM. You might wake up during part of the time that they are taking the pictures, if you do, it’s ok.
So any blood vessels that are in your AVM are extra blood vessels that are not supposed to be there. And I don’t know if this is what they do for all AVMs, but this is what they did for mine, they clotterize the blood vessels that are feeding blood to the AVM so that they stop doing that. They didn’t actually take any of them out. If that makes you feel better.
We’re here for you!
Jessica
Hi Corrina, It seems that this thread got a little side tracked 
, There are so many members here that want to help others and this is what makes out community great !. Going back to the start of the post, Go for the Angio please as my AVM was not seen on both a CT Scan and MRI, Its a knot in veins, search NIDUS on google and you will see what it looks like, Its important to take measures to limit your blood pressure until you know more about your AVM, And also if you are having any loss of consciousness then you will need to speak to the DMV (If you dive), This may seem like a big issue but imagine what could happen if you loss consciousness while driving passed a school, For the Angio procedure you will not be able to work out for a limit time due to the healing of the entrance point. The procedure is something that I myself have had many times (more than 5) and never had any issues, Some minor pain in the area of entry (top of your right leg area) and you have to rest for a few days and not lift anything heavy also.
Thanks Martin.
Hi Corrina, have the angiogram. It can save your life. My AVM was in the posterior medial right parietal lobe.
How/if you will be affected depends on several factors: exact location, severity, size, and how the surgeons address it. Nothing is 100%.
Mine was discovered after a head-on collision in my early 30s in 1992. Lots of head & brain trauma so lots of tests. Had I not had the accident AND gotten a second opinion on the MRI, I never would have known I had it until it hemorrhaged. The first doctors missed it. I only got a second opinion for no other reason than piece of mind. I had no symptoms. So I was very fortunate.
No permanent deficits other than very very mild agraphia. I’m also a drummer so I feel is a tiny bit when I play.
Surgery is scary, no doubt about it. And the angiogram is a little south of pleasant. But, I’ll share with you what my surgeon said, and what helped me decide to have surgery. He said: “you’re young, fit, and healthy. The short term risks of surgery now are far less than the the long term risks of not having surgery. If the AVM bleeds when you’re older the effects will likely be much worse.”
None of these sites, as well as google, yahoo, etc., were around when I had mine. So I was at the library a lot and asked a lot of questions of my surgeons.
You’re living in a time when technology is amazing, the surgeons and nurses, are equally amazing.
Not sure where you are. I’m in Phoenix, Arizona. About one mile from Barrow’s Neurological Institute. Lucky me!
I was in and out in four days. Mind you I wasn’t running marathons, and recovery was long and slow, about a year-and-a half. But I essentially got back to nearly 100%.
Keep us posted on your journey. And reach out, we’re here for you.
Bill