My name is Brandi, I’m 28 years old and I was diagnosed with a cerebellar AVM in early April of this year.
It was found incidentally and is located in the inferior right cerebellar region with nidus measuring about 1.3 x 0.8 x 1.4 cm.
After an MRI with contrast dye, I was told I may be a candidate for gamma knife radiation. I was happier to hear that since I wanted a minimally invasive treatment. My neurologist then scheduled me for an angiogram in the hospital to better understand the flow and any potential complications.
After the angiogram at my follow up appointment I was told my best bet would be embolization and and a craniotomy. I am seeing Dr. Stetler in Charlotte, NC and he and his team have agreed that because of the location, size and draining veins, it should be a relatively uncomplicated excision.
Was anyone else here with a similar avm recommended surgery over radiation and did your doctor explain why?
PS: I am still sending my images off for a second and maybe even third opinion in the meantime. Not that I don’t trust his professional opinion, it’s just brain surgery… on my brain, that’s all lol.
I can’t even exactly make out exactly where your AVM is located - I’m no medical pro, and have learned from what happened to me & reading off here + other places online
Mine was embolized 100% on the 1st try at Barrow Neurological in Phoenix
Nothing but good to say about these guys
I’m not quite sure if you’re able to make a cross country trip - I was just very fortunate
Not saying, other neuros aren’t as well equipped
I noticed you’re younger also, mine ruptured when I was 39(almost 3 years ago) - it’s a slippery slope, with MD’s opinions, symptoms, etc.
Try to do your homework, unfortunately its not very straightforward for most
I was just very “lucky” I guess -
Treatments vary so much from case to case & MD to MD
I had a cerebellar AVM when I was 39, almost 30 years ago. I’m sorry I cannot be of help to you, as my AVM ruptured and nothing but neurosurgery was available at the time. It was a complete miracle that I survived.
So much has changed since 1993! Embolisation… Gamma knife… The angiogram is still the best means of giving the surgeon the best information regarding the characteristics and possible approaches to treating your AVM.
Your instinct to get second and third opinions is a smart one. As you say, it’s only your brain!
Lifeisgood
PS. I am curious as to how your AVM was discovered “incidentally”? No signs or symptoms? (I had no S/S…it just ruptured, giving me a sudden, severe headache in the back of my head!)
Hi Brandi. Mine was not in the same place, it was a Dural AVM. I had embolization (urgently after bleed by Dr Boo at WVU). I was told I needed surgery to finish the job. I got a second opinion because, like you said, it’s my brain. Turned out another angiogram was what was needed. Dr Bain at Cleveland Clinic, by being willing to try more embolization discovered I didn’t need it. All was done the first time. Point is, second opinions are quite valuable.
I too feel incredibly lucky since somewhere around 80%+ of people with an avm in this area of the brain discover it via rupture. Mine is at the very back right side of my brain just above the nape of my neck.
Also, I spent a few months in Arizona before the pandemic hit and I wouldn’t mind having an excuse to go back lol. I keep hearing great things about your doctor! It’s nice to know there are other great minds out there and I will utilize their second opinion feature on their website as well.
I’m sorry you had to find out in such a catastrophic way! I’m hoping to treat this before it has the chance to rupture but I guess I had my little heart set on something that is slowly drifting beyond the realm of practicality.
The symptoms I felt were dismissed as being unrelated like auras of light on my vision, extreme dizziness and lack of balance upon standing, loss of appetite (lost 15 lbs in about 2 months).
Even after the avm was diagnosed, the nurses insist none of it is being caused by the avm.
I was involved in a domestic violence incident and a CT scan of my neck was ordered with contrast dye that revealed the avm.
That’s awesome news!! Not gonna lie, I’m kind of hoping to be given some amazing news like that. What a relief that would be!
I have 2 boys aged 11 months old & 3 years old and I’m not reallllllly looking forward to the recovery period of a craniotomy, like anyone ever is lol.
Thank you for the encouragement and sharing your story!
I’m so sorry I asked about how you found out you had an AVM “incidentally”. I thought it might have been when having diagnostic procedures after complaints of neck pain or such. What a shock to find out one has an AVM! Most of us don’t even know what it is. Even I did not know, working in a surgical ICU! It wasn’t something specifically covered in nursing classes, plus I dealt with mostly cardiac patients.
As to your symptoms… How could anyone dismiss them as unrelated? Was this a neurologist who dismissed them? Or a primary doc? Extreme dizziness and lack of balance definitely could be related. And those symptoms, plus auras, could result in a loss of appetite and weight loss. One thing I have learned through my experiences is to trust my instincts. You are the expert on your AVM. How many people do you know with this condition? (Pause) I didn’t think so!
If it is your nature to be inquisitive, do a little research on your condition. Not to become obsessed, but hey, it is YOUR BRAIN!
It’s alright to ask, I’m not hiding it any longer!
I feel you on the rarity of it all! I’ve had to explain what it is to many practitioners at other unrelated appointments so I can tell it’s not very well understood in the majority of the medical community. Interestingly enough, it was the nurses in the neurologist office who dismissed my concerns. The neurologist said it’s possible it could be attributed to the avm but that he did not see any evidence of a bleed. I’ve looked into it and I’m with you, I don’t see how they could not be related.
All things aside, I feel pretty good about the situation I’ve found myself in as it could have been so much worse, I just want to make sure I’m covering all my bases with another opinion!
My name is Francisco, 45 years old. 1 year ago I was diagnosed incidentally as well, and like you mine was not to big, on the right lower part of my brain, cerebellum. I can relate with most of the emotions you might be going through.
We went to Cleveland Clinic Ohio, and was treated by Dr Mark Bain and his team. At the time, I was advised that because of the location and size, I was a candidate for Gamma Knife or Craniotomy. After more exams and angiogram, 3 small aneurysms where also found, which helped me decide that craniotomy was the correct decision for me. Once done and hopefully done right, it would be gone. Of course recovery was tough, plenty of physical therapy, about 5 months.
A year from that I would say I am 100%, or as good as I can be. Every story is different and depends on what options, risks and I think also on gratitude.
If you need any feedback from myself let me know.
I hope you do great, my only advice is research your Drs, their experience and how confortable you feel around them.
Hi Brandi, Disclaimer: I’m giving my opinion based on no medical knowledge. My 2 craniotomies were back when there were no alternatives. (So in a weird way you’re lucky to have a choice.)
My gut instinct is to go with the least invasive option if there is any chance of success.
By the way, Phoenix in the summer is not a picnic. Hah! 115 degrees. But from what I gather, Barrow is top notch. Best wishes, Greg
Hi Brandi. And sorry…it’s so stressful. Definitely get a second opinion. My son’s was removed by Marc Bain at the Cleveland clinic. Best decision ever! His was on the left but similar to yours.
Thank you for this advice and encouragement!
It’s really relieving to hear from everyone on this board- especially since yours was in a similar location. It was kind of heart breaking to learn that I would no longer be a good candidate for gamma as well. I felt like the rug had been ripped out from under me.
I try to remain grateful because you’re right, that gratitude has helped me begin accepting my next steps. Sometimes I struggle with that though. I was diagnosed with bipolar 1 as a young teen and I feel like I’m constantly wrestling with myself to get on the same page.
Thank you for the heads up about recovery. It seems everyone’s journey is so different in terms of time and difficulty. I’m so pleased to hear you are doing well one year out! I hope you continue on this path and I appreciate you helping others like me who are at the beginning of this journey, just kind of lost. Thank you!!
I would love more than anything to have the gamma knife over the craniotomy. I was told prior to my angiogram that I would be a candidate for it but after my angiogram it was recommended that we first do embolization to make surgery safer then have a craniotomy the following day. I am awaiting my images from the radiology department at the hospital where I had my angiogram and I will be sending those off to 2 other neurosurgeons for second opinions. I understand why the gamma knife was no longer recommended for me and I almost feel like getting another opinion is useless but I am anyway to know I tried to avoid surgery.
Sidenote: I have never been there in the summer! I was there for a few months in the spring but my stay came to an end just as it started hitting the triple digits daily lol. I’ll keep that in mind if I e find myself back in the ‘blow dryer’ once again lol!
Thank you for chiming in with your advice and experience!
I hope this isn’t weird, but I just learned of your son’s experience in another thread and it was so encouraging to hear about his awesome recovery!
I will be sending off for another opinion or two as soon as I am sent my radiology images from the hospital and Cleveland clinic was on my radar so I’m glad to hear you and your family found success there.
I hope your son continues to thrive and that your family can have some peace now that it is removed.
Thank you for giving me some peace of mind!
Of course it’s not weird. This site was a godsend for me. I am sorry you have to go through this too. It’s such a shock when it is found. And such a learning curve. Every doctor has their own opinion and view. And it is so important that you feel comfortable and confident in them. For us it was a no brainer…… Marc does them daily and the doctor here might see one every 5-10 years! It was 100% my son’s choice. He wasn’t ready to do it at home but when he met Marc he wasn’t so nervous anymore.
He was also very rare…. He walked out in less than 48 hours. He had no real complications except a month later when he got back to University in January and walked from freezing outside into a heated room. It gave him a massive headache and pain at the surgery site. He took the pain meds, went to bed and was fine the next day. And never had another problem. I wish everyone’s could be so easy. And I wish you the best.
Hi Brandi, I’m glad you’re getting lots of good advice. (I was just giving an impression based on my 49 year old avm/craniotomies experiences. That’s like ancient history in medical terms.)
For what it’s worth, I feel you’ve got a nice way about you and I hope you keep us posted as to your situation. People here really do care and find meaning in helping with our experiences. Best wishes, Greg
I know insurance coverage & distance make things feel like a world apart.
I’d push for Barrow - I know they aren’t the only pros. But, being this well after what went through I attribute to the luck of winding up in their hands.
Oh, it’s getting nice warm here now. I’m used to it - but, I don’t know of my brain is anymore.
Not exact answer for this stuff, def wish u the best!
Hi there. I also have a right cerebellar AVM. Mine is sizeable (not exactly sure how big) and I have always been advised not to treat it. I’m in the UK and the docs here think its too risky. So I have chosen to make my peace with it and live with it. I believe if I were to be offered anything it would be GK (this was once mentioned) but for me the risk of deficit over what I have is just too big. I’m wishing you all the very best for a successful outcome though whatever happens. Let me know how it goes
Mine was discovered incidentally By a CT after I fell and hit my head. Originally identified as an anomaly that my neuro immediately identified as an AVM
Lifeisgood