Hello, and thank you for having this group. Last Friday I was diagnosed with a 1.2 cm AVM in my left pons near my 7th cranial nerve. It is not ruptured but I am terrified waiting for my referral to go through and get more testing and hopefully treat this. Does anyone have one is this area and what were your symptoms, treatment, and results? I had two prior MRIS that missed this but have had symptoms for some time until recently my headache and pressure in my left side of my head became worse and my eye lid is twitching mostly all day now, along with neck pain and redness behind my ear. The doctor tried to say I had dermatitis the first time and sent me home but I went back and asked for an MRI and told them I didn’t care if they thought I was crazy but to please put my mind at ease because I feel something is wrong. Hmmmmph
A lot of us have been where you are and the good news is we are still here! There are very few people that I remember having their AVM in the pons but I’ll have a ruffle around and see if I can find some. Sometimes it is sensible to get treatment. Sometimes it isn’t really possible to have safe treatment, so you’ll need to be guided by your neurosurgeon or interventional radiologist as to their recommendations for you.
What I found, while waiting, was that telling the people I live with, work with and socialise with that I have this weird AVM thing that might give me a stroke (and therefore, if they should ever find me inexplicably inspecting the carpet, they should dial 911 straight away). I also bought a medical wristband to put my name and hospital id and my wife’s phone no on so my records could be found ASAP. Doing those things helped me feel I was a bit more in control or a bit more protected.
In regard to exercise, I would say discuss with the neuro but I would expect they will recommend you to keep a very moderate level of exercise for now: avoid straining / lifting heavy weights as this strain is an increased risk of a bleed. I would also think they would advise on whether it is safe to use ibuprofen: don’t take it for granted but discuss that with the neuro, too.
A change to our lives like this is very scary but I have to say I think we get used to it and it loses its edge as you get used to it. I would also say that I was able to have treatment for mine and I relaxed rather more after my symptoms had abated. It is tough being in the space you are at the moment.
Welcome! Feel free to ask anything you like. That’s what we are here for.
Very best wishes,
Hi Lisa and welcome! It’s great you found us and hope we are able to help you out. The early days were really scary for me, I had a little bit of the 10 foot tall and bullet proof outlook but certainly received notice that wasn’t the case. My AVM was in my left temporal and decided to show it’s self via rupture. When I got out of the hospital and I regained my memory it was a slow journey and this group was so supportive, understanding and really helped me make sense of what was happening.
I read your profile, I was always very active with a focus on weightlifting, once released fro the hospital I was allowed to only walk, no weights, no running, no straining. Over a period of a few months during follow up more and more was added with my neuro’s blessing. Went from walking to jogging and light weights, to nothing with a lot of straining to basically whatever I wanted. I didn’t add or change without the consultation. We all have similarities but are very different, these things effect us all in different ways.
I certainly would have a good discussion with Drs before doing too much in the gym. I hope your follow up and consults go well, and any questions ask, the experience here is wide ranging and we are all really up front about our experiences. Take Care, John.
Thank you so much for responding! I would be very appreciative of knowing someone who had one in a similar area also.
I am going to get the med ID bracelet and I cancelled my bike ride and training for now.
I’m having a hard time separating symptoms from anxiety at this point and every time I feel a new pressure I think I’ve ruptured. They also found inflammation so I’m worried about that as well. I’m sure I am not unique in my worry.
Did you stray far from the hospital? I am supposed to go out of town this weekend and will be almost two hours from a hospital.
I appreciate your responding and information!
Thank you for replying. I concur, these days I am pretty scared. I decided to cancel my workouts and training for now. I am waking up each day with pretty intense pressure on the left side and I think that constant reminder is worsening my anxiety.
I hope to hear back from the neurosurgeon soon and get this taken care of! I am so grateful for this site.
It has to be your choice as to whether you travel away from a hospital but I think part of what you’re going through is shock and panic, which is completely normal! So… important to just chill about it as much as you can. Being hyper about it is counterproductive. I think it’s impossible to “be calm” when you’re not but do your best.
Truth is, this thing has probably been there for a long time and is changing very gradually.
Try to chill out as best you can. The things one of the docs told me was to cut out stimulants – coffee, chocolate, smoking, alcohol – and I did. It took the pressure off for me very nicely. However my AVM is a dural arteriovenous fistula (“DAVF”) which don’t behave quite like intracranial AVMs and mine was changing pretty rapidly by my reckoning so I felt better for about a month before I started to feel less well again. A good part of how I felt was probably over-analysis and anxiety, so I may not have actually been as poorly as I felt, I don’t know. It took me six months from a doc first saying “you’ve got what we call an AVM” to having an operation, so don’t go round thinking you need to have an op next week: it probably isn’t that urgent. As I say, you’ll have had it a long time.
On the other hand, if you get sudden and/or severe symptoms, go straight to the ER. I’m pretty sure you’ll know if it is really kicking off. More important is that the people around you know because you may struggle to communicate if something does kick off, so they need to understand the urgency, not just you.
Hello Lisa, my AVM is in about the same location as yours, except on the right side, near the Cerebellopontine angle, which is where the pons and cerebellum meet. This AVM was pressing on my 5th nerve causing electrical shocks and twitching across my right eye. Mostly during stressful times. The Dr. said I had this since birth. I was 52 when I discovered it, I never had a bleed.
I know exactly what it is like to be worrying about being near a hospital, and I was lucky to have worked at the Cleveland Clinic Abu Dhabi hospital in the United Arab Emirates. Whenever I traveled to Qatar or Oman, I worried about which hospital could handle a cranial bleed. I worried too much. While commuting to work I’d think, “OK, if I had a bleed now, I’d pull over, leave my keys in the car, hail a taxi, blah blah blah.”
I do think it would be a good idea for you to type up a short explanation of your situation on something the size of a business card and keep a copy by your credit cards.
Anyway, I chose gamma knife surgery at Cleveland Clinic in Ohio. This was due to the inoperable location. That was 3.5 years ago. I had two flow related aneurysms which are now gone. The AVM is 90% plus gone. If I could share a before / after MRI image here I would. It’s fascinating to see the difference.
I seldom think about it now. I kept walking and cycling. No weight lifting. I hope some of this helps. I’d be happy to answer any other questions.
Thank you Michael!
I have been diagnosed at the exact same age and I also have never had a bleed. Thank you for the advice about keeping a business card with the information, that is a good idea. I was also thinking of getting a medical ID bracelet as was suggested as well. I am curious if my location will be inoperable. Do you know how large (or small) your avm was and does that make a difference for surgery? And did you undergo gamma knife surgery one time or was that a series of treatments? Also what are the flow related aneurysms? I apologize for all of the questions. I am going cycling tomorrow and I thought of just doing circuit training with very light weights and nothing that would strain. I feel like over the last week I’ve become so cautious that I am making myself “act” like a sick person so I am going to put on my big girl pants and try to to adjust accordingly.
This was all very helpful. If you could tell me more about the gamma knife surgery and the recovery I would appreciate that.
Thank you so much for your reassurance. I am going to go and I am trying to “chill out”, if only you knew me, that is some hard advice. I am on the go 24/7 and my brain (thoughts) is my worst enemy, now literally, and I cut out coffee starting today. I cut out alcohol six years ago because I thought it was causing seizures, that and I drank too much lol, but chocolate, ughhhhhh, there is nothing left. This thing is worse than satan. Hey you may die but if you want to take care of yourself stop doing everything you love and …wait. The sarcasm helps me, so I apologize. No more chocolate after today. I just ate a chocolate protein bar!
Is it possible to have had two MRI’s and this thing be missed? I had a craniotomy in 2010 for hemifacial spasms. They did microvascular decompression surgery. That surgery was done right next to where they located the avm. I had an MRI and an MRA done at the time and then three years later another MRA but no one picked up on it?
I have my initial appointment set up for July 17th and I put myself on the cancellation list, I am five hours away from where I had them send the referral and I passed up a neurologist and am going to the neurosurgeon. They said if warranted they can do my angiogram that day. SO in the meantime, crossing my fingers, praying a lot, getting a med bracelet, and going fishing with my family and my sons :-).
I appreciate this board and the information so very much. I am going to read your story after I hit send to this reply.
Chocolate! I know. I’m with you. But, it should only be temporary. I cut out all of it for at least a year and a half but three years post op, I do chocolate as much as ever and no complications.
Lots of AVMs get missed on MRI and an MRA is very specific (I think) so they inject the contrast into an artery to see if it leaks anywhere unexpected but if they inject the contrast in one place but your leak is somewhere else, of course it doesn’t show up. So I think it depends on where they looked and how interconnected the things they looked at and your AVM actually are.
I had my angiogram and my embolisation on the same day. My doc was quite confident as to what he would see on the angiogram so said we would follow plan A and if the angiogram showed something else, he would wake me up and we’d do plan B another day. (I had my angiogram under general because I’m am vasovagal – I can faint ridiculously easily). I’ve subsequently had angios under local and they’re fine.
Keep believing in yourself. You’re gonna be fine.
Very best wishes,
My AVM was 3 CM. I would not think that a 1.2 vs 3.0 makes a difference for surgery. It’s just that it was pretty deep and it’s not good to poke around the brain stem.
My gamma knife treatment was one time. I arrived at the hospital around 7am and left about 4pm. They did an MRI, CT, and Cranial Angiogram. Those images are all merged together to create a 3D model and to calibrate the Gamma knife machine. They attached a square metal frame to your head so it’s immobilized. The gamma knife procedure took 1 hour 20 minutes. Once discharged, I went to a restaurant for dinner, felt a little sick while we drove to our accommodations. The very next day we flew from Cleveland home to Salt Lake City. You can fly but not scuba dive. I took anti nausea medication and some steroids for about two weeks. I was tired for a few weeks, but that was about it. After 6 months of healing, you’ll get headaches for a while. I also had a sore neck for several months about then.
A flow related aneurysm is a bulge in a vessel wall due to high pressure. It is similar to a riverbend where the water pushes against the outer bank on a turn. It pushes it out a bit. This is because a malformed artery does not go through a capillary bed as the blood transitions from an artery to a vein where otherwise, the pressure would be reduced. My artery drained straight into a vein. That caused two small aneurysms that were related to blood flow. I no longer have these.
Prior to knowing I had an AVM, I’d bike centuries and even the LOTOJA once, and ran a marathon. I guess something could have happened. I think the exercises to avoid are lifting heavy weights that cause your head to strain. I’m happy to answer any other questions.
I just looked and it seems like the location of your avm is not far from mine. Mine is in the basal ganglia. My symptoms were short term memory loss, “falling eyelid”. My avm was discovered in 1984. In that time treatment was in experimental phase. I was 8 years old at that time. In this moment I am 45. You are going to be fine. I will pray for you. If you want to talk please contact me. I will be more than happy to be there for you. With all my love Angie
Thank you that means the world to me. I am really struggling today. I went for a bike ride, just a moderate paced one and I came home dizzy and today the pressure in my head has me terrified. I still have nine days before I go to the neurosurgeon and if something happens here there aren’t any neurologists or surgeons that can treat this, so I am starting to freak out. Did you have yours removed? I cannot imagine being 8, that would be scary as a child. Your kindness is comforting. I’d love to stay in contact.
Hi Lisa!!!God is with you, nothing is going to happen, please feel free to contact me anytime, I would also love to stay in contact with you. I will pray for you. My avm is in a part of the brain that can´t be operated by conventional surgery. I have received proton beam radiation, gamma knife. It´s still there in my head but I´ve learned to live with it and all it involves. I don´t remember being scared as a child, I do remember that on one of my radio surgeries they had me go to the treatment without eating anything. The doctor told my parents that they shouldn´t worry if I was weak after the treatment. When they told me they were done. I got up and asked. “Can I have breakfast now?”, I think I surprised the doctors. And since then I have always been really strong, I thank God for that, and for other blessings. I´m here for you.
Thank you Angela, you sound like a true warrior!
I had several wrong diagnosis’s too until the CT scan in the emergency room brought me some answers. I had to wait a month until my surgery. During this time, my neurosurgeon warned me to keep my blood pressure low. So, I didn’t exercise and I didn’t go back to work while I waited. However, it was winter so a bit easier to not be so active.
Wishing you all the best!