Replies to This Discussion

ModeratorPermalink Reply by Barbara H. on September 12, 2011 at 2:06pm

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+sta...

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ModeratorPermalink Reply by Barbara H. on September 12, 2011 at 2:13pm

Whoops...I forgot to add...please let us know the results regardless of which test you end up taking!

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Permalink Reply by Michael Stanfield on September 12, 2011 at 2:14pm

i will thanks!

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Permalink Reply by Michele_A on September 12, 2011 at 7:44pm

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

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Permalink Reply by Michael Stanfield on September 12, 2011 at 8:18pm

wow! thanks for the reply im just a little nervous but is for my own good i hope!

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Permalink Reply by Michael Stanfield on September 19, 2011 at 12:38pm

thanks

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Permalink Reply by Kristin Schafer on September 28, 2011 at 9:00pm

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

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ModeratorPermalink Reply by Lesley S, Queensland on September 13, 2011 at 7:41am

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.

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Permalink Reply by sharyn l on September 13, 2011 at 10:13am

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!

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Permalink Reply by wes on September 13, 2011 at 7:35pm

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.

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Permalink Reply by Diane -Paul Faherty Mom on December 27, 2011 at 9:53pm

My son had a residual Avm treated with onyx only no radiation in Dec2010, just had f/u angiogram one yr later nothing there AVM gone. Plan is repeat angio in 3 yrs, he will be 15 yrs old then.

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Permalink Reply by Susan Harris on September 14, 2011 at 5:19am

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.

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