I have had MRI/MRA/CTA and a cerebral angiogram on 10/20/2015 and the interventional radiologist discovered an AVM in my left neck Neck or Left Side of Head. I'm not exactly sure yet as the Interventional Radiologist had limited time with me and had to go to other procedures. He said he showed the neurosurgeon my cerebral angiogram images at the hospital that day and he is referring me to that same neurosurgeon, who I have not yet seen and will see soon, hopefully.
I have some questions and hoping someone can shed some light/knowledge on things for me...
1.) I didn't realize I could have an AVM in my neck or anywhere outside of the brain...I am learning and I'm sure I have allot more to learn.
2.) Does anyone know the general prognosis for an Extracranial AVM before and after treatment?
3.) The interventional radiologist really made me think it wasn't serious, sort of downplaying it, but I was always under the impression AVM's were always serious. Is it true that not all AVM's are serious? Perhaps I misunderstood him or misread him since I was tired after the cerebral angiogram?
4.) The interventional radiologist even mentioned the AVM may go away on its own...is this true?
Thanks so much for any insight and I look forward to getting to know you all better. My positive thoughts and prayers go out to anyone who has suffered a loss and/or is struggling with recovery...I hope things keep getting better for everyone.
Hi, Mike, glad you are here. You may wish to join our Facial AVMs group (click Groups at the top of the page to find it). I am really not certain why your interventional radiologist would say that the avm wasn't serious or that it would go away on its own. Neither one of those observations hold true with our experiences here, and make me wonder if your IR is insufficiently acquainted with extracranial avms. (My son's avm is on his eyebrow.)
There is no general prognosis, because extracranial avms are as unique as fingerprints, but they do tend to grow and progress over time, and may worsen if the treatment given is not optimal. Therefore, I would encourage you to seek out several opinions from doctors with extensive experience with head and neck AVMs. Looking at the stories of the members in the Facial AVMs group will help you learn more about the experts. I'm happy to share information about my son's doctor with you, too. Best wishes!
I had some AVMs in an area similar to yours. Mine was subdural.I was told I was born with it and it took all these years to manifest itself through the symptoms which made me go to the doctor. Although some small AVMs may go away on there own most do not, and many may bleed causing more problems. I was fortunate that mine did not bleed. My first procedure was an Emobilization performed by an interventional radiologist and my symptoms went away for three years then the symptoms, weakness on the left side and blurred vision much like the symptoms of having had a stroke returned. After more MRIs and angiograms they found another AVM in a different location near my spine that's when the radiologist referred me to the chief of neurology. I had my first surgery in April 2014,then another in April 2015. I still have to have another angiogram to see if the surgery got rid of the last AVM. If the surgeon decides to do a resection of the AVM you will spend over night in ICU then to a hospital room for about a week for pain management. Then about 4 weeks in Physical therapy at a rehab center if you need to. AVMs are serious, so if you don't here from the neurosurgeon by 10/28/15 be proactive and call the radiologist office and ask for the name of the neurosurgeon that he referred you case. Once you get his/her name call and make a consultation appoint yourself. You have to be persistent because they are really busy and sometimes overlook referrals, they are after all human too. Hope this help to relieve some of your anxiety.
You'll be fine.
Hi Mike. Welcome to the site. I think all AVMs are serious. However brain AVMs can be life threatening too and maybe this is what made your IR give you the impression that it wasn't. My own AVM is a brain one and maybe this is the most common area for them. But my understanding is that you can have an AVM virtually anywhere in the body that has a connection to the neural tube. I don't think even a doctor could give you a prognosis as each AVM is very individual and so is the way they respond to treatment. AVMs normally develop in the very early stages of life. They just don't always show themselves until much later on when they start causing problems. I can't help feeling cautious about the IR telling you it would disappear on its own. I don't think this is true. Best of luck to you.
Madere, Pam, and Lulu,
Thank you, so much, for the thoughtful replies. When I have a chance, I'll read more about your stories and I'm sorry for any pain and suffering you or your loved ones have had to go through and I hope things keep getting better!
Maybe, the IR was downplaying it because he didn't want to scare me after the procedure? I thought all AVMs were serious too, so thank you for reinforcing this for me, so I can be proactive on Monday and get copies of my results and follow-up for a referral.
I will join the facial AVM group ASAP.
In case you all didn't know, Barrow Neurologigal Institute in Arizona, part of St. Jude's, has an online second opinion program for just $100. I used it to get support for having the cerebral angiogram and the Assistant Director of Neurosurgery reviewed my images, which you just have to upload from a disk. He responded with a personal letter, via e-mail, within four days, including the weekend!
I will do this for the cerebral angiogram results as well, since is seems the IR's comments may be a bit odd. This IR referred me straight to a neurosurgeon and I did not realize IR's sometimes do procedures...still so much to learn!
Thanks for letting me know about treatment options and what to expect as well.
Thank you again, so much, for the quick replies...this will help me get my butt in gear on Monday lol!
Enjoy your day and weekend!
Madere, Pam, and Lulu,
Just read a little bit more about your stories and I will send positive vibes and prayers your way that your son has the best possible outcome, Madere, that your AVM never becomes a serious issue, Lulu, and that your next angiogram shows complete obliteration for you, Pam.
Enjoy your weekend!
I had an AVM that seems to be similar to yours. Mine was an extracranial avm on the left side of my head. Don't be nervous or anything about the fact that you didn't know about where AVM's were located. Many people don't know about them until they or someone they know are diagnosed. They can occur anywhere on the body though.
Like Madere said, there isn't a general prognosis. They do grow and can cause other problems over time. I went misdiagnosed for too many years, and over the span of 5 years, it doubled in size.
Your impression that all AVMs are serious is a good impression. It is dangerous if they burst. There are other symptoms, varying from person to person obviously, and they can be harmful, making life difficult.
I was told that most AVMs don't go away by my surgeon.
My advice to you would be be assertive when it comes to information and appointments. If you aren't receiving calls for appointments, call them. Find out what is going on and push.
I hope that whatever your choice of action is, it goes well.
Best of luck.
You have support here.
Thanks so much for your reply...it's perfect timing. I finally will get in to see the treating doctor this Friday and I just set the appointment up about one hour ago. This will give me confidence when I meet with the doctor, to be persistent and have my questions ready and I will keep my blood pressure down until then, which is hard for me, since I like to be active lol.
I read your page and I'm so glad they finally diagnosed you correctly and it looks like it was obliterated. The cosmetic surgery every six months sucks, I'm sure, as well as the slight nerve and muscle damage and loss of feeling, which is difficult at any age, especially when you are so young, like you are. Still, I'm so glad you're here with us, without an AVM! anymore.
I'm glad you were able to get an appointment!
Thank you very much, my AVM was obliterated. I have some trouble but I work through it. I hope your success story will be better than mine. Be confident.
Thank you for joining!
I still have to wait to see a second interventional radiologist, with my health plan, today at 1pm pacific time. That referral is for Dr. Agrawal, for general consultation and treatment consultation. Attached is the opinion I received from Barrow and it looks like great news to me! I hope Dr. Agrawal's opinion is the same. The only word I don't like in Barrow's report is the word "indeterminate" lol, but I will just trust the overall opinion.
So, this is great news! Two months ago, my MRI showed an aneurysm, then the MRA report showed two aneurysms and characterized both with great specificity (size, location, saccular, one anterior leaning, and one posterior leaning), the CTA was indeterminate, and the Cerebral Angiogram two weeks ago indicated an AVM and no aneurysms. So, either the tests and/or the radiologists' interpretations were incorrect, or the aneurysms and the AVM were prayed away. I know that may seem silly to some, but I believe it was all prayed away, with prayers and positive thoughts...my family is very religious and I must be on at least ten prayer chains.
In any case, after all of this, I can certainly empathize with the uncertainty, challenging treatment decisions, and general worry that comes with these type of diagnoses, aneurysm and AVM...my husband and I have been living as if I had two aneurysms and then an AVM, for the last two months.
I thank you for all of your support and my prayers and positive thoughts go out to all of you in hoping your lives keep getting better.