Went to my appointment with neurologist & he said he wasn’t convinced it was AVM from the MRI results but wants to do an angio. Not quite sure why we can’t just do another type of test instead of this major one first. Maybe I should be greatful that the doctor doesn’t want to drag his feat and get results but it’s scary. I have my 2nd appointment with another neurosurgeon that specializes in the angio Thursday so I’ll ask him more questions. Why take thte risk if your not certain is how I feel. Maybe because my headaches and other symptoms…I don’t know. Just seems quick.
When my AVM bled in 2002 I had lots of MRIs, and other tests to ‘rule out’ this, that and the other thing. After all that I was still given a misdiagnosis of one cavernous angioma, and told nothing could be done about it.
After seeing a few neurologists and neurosurgeons, who all agreed with the initial DX, I finally hooked up with a neurosurgeon who wanted to do an angiogram, a procedure I’d never heard of even in the four years since the original dx. I had the angio and that’s when it was discovered that what had bled was an AVM, and that I also have an aneurysm.
Looking back, I wish the angio had been done early on. It is pretty much the definitive test to diagnose an AVM. Fortunately for me I didn’t have another bleed during those four years of no one being able to see both the malformations on the MRIs and me not having any treatment. Since I got the correct dx I’ve had embos done and at least had the peace of mind knowing that I was so much more protected than I’d been before.
Please have the angio. It isn’t nearly as bad as we work ourselves up to thinking it will be, and the sooner you know what you are, or are not, dealing with the better off you’ll be all the way around.
When you’re not certain is when you most need to do what will give the answers that will then allow you to be armed enough to make other decisions regarding treatment.
I know this isn’t an easy decision to make, and I’m wishing you all the best.
Welcome to the site Caryn.
I just copied this from another discussion I posted on …
Of course, you are scared…that is a completely normal reaction. Many eons ago…I had an massive stroke due to my unknown AVM. At one point they told my family that I had less than 2 hours to live! I would have given just about anything to know in advance that the AVM was in my head before I had a brain hemorrhage. It is a very personal decision to have an angiogram done. However, at least if you had a problem with the procedure…you would be in the hospital where they could do something about it. I was in an airplane on final approach into Miami when I had my AVM bleed! I had only just turned 30 one month before I had my stroke.
I firmly believe in Carpe diem…seize the day! Look up jennymattius…she has the same dilemma. I will be praying for you!
I know this is all very scary and such a difficult and confusing time for you. All the tests and possible treatments with their risks of complications and what they really will do or why necessary. It can be overwhelming. So it’s great that you have all of us to bounce ideas off and to learn from our shared experiences.
So here’s the thing. I’d say you should do the angio. Like Tori said, it’s pretty much the definitive test and really what you want. It gives the docs the best understanding of what they are looking at, what treatment options to recommend, and what you should expect. And honestly, eventually you’re going to have one so might as well get it over with.
And really…it’s not as bad as you probably think. Sure, it’s no fun and there are risks but they are really very low. Docs do angios all the time. They are good at it. I’ve had upwards of 30 of them. The worst part is laying flat for hours afterwards. Granted mine isn’t in my brain, but it’s relatively the same procedure. Although sometimes the brainers are “awake” for them, or only slightly sedated. So check into that part with your docs as admittedly it is more sucky to be awake!
Most likely the anxiety leading up to the angio will be worse than the actual thing. Most members here have had angios. If you search the blogs and forums I’m sure you will find peoples notes about their good & bad experiences. Read those to answer some of your questions and fears. And of course to help you prepare questions for that next doc visit!
I agree with everyone else, I would encourage you to have the angio. It truly isn’t that bad of a procedure and it is the “gold standard” of tests to see what is really going on. My cerebral AVM’s were missed with MRI’s and CT’s and I was told by several doctors there was nothing wrong with me. The AVM’s only showed up with the angio. If I didn’t keep pushing the doctors and insist something was wrong, I never would have had them treated. Take care and I hope everything goes well. Sue