Hey everyone!!! I was originaly scheduled to have an MRI/MRA for my 6 month follow up from my old Dr, which has relocated and now the Dr that took over is sched an angio. Has anyone had either of these for check ups? I am feeling hesitant about the angio since my orig Dr didnt order this. Thanks for your answers. Mhikey
A lot of us refer to an angiogram as The Gold Standard of follow-up tests…
http://www.avmsurvivors.org/main/search/search?q=Angiogram+gold+standard
Whoops…I forgot to add…please let us know the results regardless of which test you end up taking!
i will thanks!
Hi Mike, I had a similar happen to me. I had an angio scheduled this December for my 6 month follow up from my old doctor, and upon his relocation, I was told by the new team of doctors that they would schedule my follow up angio in 3 to 4 years - YIKES!!! I wasn’t comfortable with this at all and would have preferred to have the angio done so they could monitor the state of my residual AVM and am seeking a second opinion now. While I’ve already experienced an AVM bleed back in Feb, the doctors were up front with me and did tell me that I could have another bleed after my CyberKnife treatment yet they would continue to monitor this until I am deemed AVM FREE :))! I now have an angio scheduled next Sept which is 19 months after my AVM was diagnosed. I would feel very good about them proceeding with an angio to monitor your AVM and wish you the BEST. Please do let us know how you make out!!!
/Michele
wow! thanks for the reply im just a little nervous but is for my own good i hope!
Hello Michael, I am one of the ones who call the angiogram “The Gold Standard”!! I have had approx 5-6 angiograms and I really wish I had had one BEFORE my crainiotomy. My MRA/MRI showed an AVM approx 3.5 cms. When my surgeon went in to remove it, it ended being 6.5cm!!! My check ups have all been via angiograms, thank heavens.
Let us know how you go, and all the very best.
I’m guessing that the new doctor just likes to be more thorough or cautious. My primary doc seems to be influenced by his experiences. For example, I had symptoms of lyme disease but no ‘bulls eye’ and never saw a tick on my leg. But had all the symptoms and then the lyme test found a single ‘strand of it’. The protocol is to only prescribe the antibiotics if you have 2-3 strands found for lyme. But my doctor had someone with undiagnosed lyme and it caused problems. So, he didn’t care what the ‘standard was’ and treated me for lyme anyway and i took antibiotics for a month. I’m glad he did. Had nothing to do with my AVM, he did this with all his patients going forward.
be well!
I recently had my 3 year post GammaKnife MRI, which showed the complete absence of my AVM. I opted to have an angiogram to confirm the results. The angiogram showed that the AVM was still present, and refilling. I now will have a CT angiogram which will help me and surgeon decide to try further radialsurgery or just take my chances.
Hi - Yes, the angio is considered the ‘gold standard’ of tests to view the AVM. I had 2 before my craniotomy and another 1 week after my craniotomy to ensure it was indeed gone. Although it is the ‘gold standard’, it is obviously surgery and has all those lovely risks and special discharge instructions. The last angio I had was as an outpatient. After the procedure, you need to remain flat for about 2 hours, then you can sit up after another 2 hours and then you need to be on bed rest for 1-2 days after. You aren’t suppose to walk stairs or any distance, etc, etc. This is so the site in your leg will heal and you would have a bleed at the site. I’m telling you these things so you are prepared to spend some time and recoup after. My first 2 angios were done while I was in ICU, so I was just laying around anyway… I wish someone had told me about the recoup time when I had the follow-up, outpatient angio. Of course with a MRI/MRA, you can leave and go dancing if you want to 
But the angio will show them exactly what they need… so ask for good drugs, bring a book and some good cookies for after.
Hi Michael, Barbara H. dropped your name on me last week. She thought we might have something else in common besides an AVM. I retired from Los Angeles County FD at the end of 2009 after 34 years in the fire service. My AVM was discovered in the early 80s while I was working as a paramedic. It was treated several times via embolization since surgery was deemed unsafe. They obliterated about 85% of it, but were at there limit for what could be done at the time. After 6 years without symptoms they came back. New images showed it had returned, but that it was no longer deemed inoperable. It had also developed an aneurysm. In 1992 I had a craniotomy for the Dural Arteriovenous Fistula/aneurism. It was successful in totally obliterating both. This summer, 19 years later, one of my symptoms returned. I had to scramble to make it happen, but I was able to contact my old doctors. Both had retired, but did get together with their successors at UCSF to discuss my case. (I am a most fortunate man!) A MRI showed a “strong suggestion” of a DAVF. I already knew an angiography was the Gold Standard for AVMs as a few of your Survivors Network Friends have stated. I traveled back to UCSF, saw some of my old friends, met some new ones, and got a clean bill of health. The MRI was simply not as good as an angio. Don’t let anyone tell you otherwise. Are there risks? Yes, but if all things are equal I think the bigger risk is missing the remnant AVM that will re-establish itself.
I am back at home in Southern California, working on my retirement house and enjoying life.
I am quite certain your doctor is making the correct decision here. If it was me, I would insist on the angio. I wish the best for you and hope to hear good things.
FB
Hi Michael,
I just had an angio today at my 12 month mark, but only because I went to ER on Monday for major headaches and the CT showed in was pretty much gone, so they scheduled the angio to confirm and yes it is gone imho I think angio is a good option in your case since it is already obliterated…
Hope it all goes well for you.
The angiogram is by far a better test than the MRA. My husband has had more than one false “avm-free” MRA results. After an angio you’ll need to be lying flat in hospital recovery for a few hours, up to 6 depending on the closure (so make sure someone has something that’s easy to eat when laying down - my husband likes wrapped sandwiches). The next day you might be a bit sore and will want to take it easy, but you could be OK enough to go back to work. You’re also awake for the angiogram during the procedure which takes about an hour.
Good luck with your procedure.
I had Gamma knife on Aug 15th and originally was going to have an angio in February for my 6 month check up but instead my 2 doctors together decided that I would just have an MRI for the check up. If the MRI doesn’t show enough then they will schedule an Angiogram. Best of luck to you!
You could look at it like this, an angiogram is going right to the problem inside of you, where as the MRI is just taking pictures from the outside. Granted, thats over simplifying things alot. This is just my opinion, but I would much rather have an angiogram then MRI any day. I had about 4 or 5 angiograms and never had any pain but the MRI was intolerable for me. All the loud throbbing noise even with the ear plugs made me sick and then I had to have my head in a cradle with a basket like top on it and the machine was all inclosed. It was scary. I know its less invasive but it was less plesant for me. I’d go for the most effective and that seems to be the angiogram. Good luck. Hope everything goes well for you.
thanks
thanks fire buddy that preaty much maid my mind and good luck on your retirement.
Angiogram is more detailed, although it is more of a big deal than an MRA. But I would definitely say to have the angio. It can show things that an MRA / MRI might miss.
Good luck
For post-op studies, an MRI/MRA is usually done following Gamma Knife treatment to monitor the shrinking size of the AVM. But, since you had a crainiotomy, the Dr. needs to do a study that gives the best picture with the most detail…and that would be the angiogram. Hope this helps!
Kristin
Hi Michele,
I just wanted to let you know that I had Gamma Knife for my AVM & had MRI’s every 6 months for 4 years to monitor the shrinkage. My Dr. didn’t order an angio until it looked like it was gone on the MRI film. Then the angio was done as the definitive study to confirm that it was obliterated. While an angio gives more detail & better picture, it may not be necessary just for monitoring the size, especially every 6 months. But, I was very happy that the MRI’s were being done that often and actually looked forward to them. It was good to hear that it continued to shrink, as yours will too!!!
Kristin