Hi, I’m Hilary. I’m 25 and was just diagnosed with an AVM in my occipital lobe.
I’ve suffered from migraines since I was 10 years old- and I’ve never had any answers as to what was causing them. Back in March I had the worst headache of my life, which is why I scheduled an appointment with a new neurologist. My neurologist decided I should get an MRI just to be on the safe side. An hour after getting my MRI done I received a call from him saying that I could potentially have what was called an AVM on the right side of my brain and that I would need to make an appointment with a neurovascular specialist. I had no idea what an AVM was- so, of course, I turned to google and managed to terrify myself.
I was able to get an appointment with a specialist for the following day- and met with him. I naively went into the appointment assuming/hoping that he would tell me everything would be fine, we would pick a treatment option, proceed and I’d recover and just move on. (I couldn’t come to terms with what was happening.) Instead, I was told that he’s 95% sure that he would prefer to monitor and observe me than to treat the AVM- because of the high risks associated with treatment. I felt like I was just being bombarded with information that I couldn’t handle- mortality rates, risks involved, the chance of my AVM bleeding throughout my lifetime. I broke down and couldn’t gather myself enough to ask questions.
So, here I am now…confused, terrified, and not sure what to do with myself. I have an angiogram scheduled for Wednesday to get a better look and then we will go from there- but my doctor told me that most likely treatment is not in the near future, and he will continue to monitor me.
Am I going to be left walking around with a ticking time bomb in my head? Is there anyone that has been in a similar situation and can give me some insight? I would love to hear about other’s experiences.
How old were you when diagnosed? Has your AVM ruptured? If so, when? What symptoms alerted you that you needed to get help? What are the do’s and don’t’s of living with an AVM? What treatment did you receive, if any? And if you did receive treatment, what was recovery like?
I apologize for being so all over the place but I’m having a really hard time gathering my thoughts.
Any responses would be greatly appreciated…thank you.
Welcome to the site! We all know what you’re going through because we’ve all done some part of your journey or experience!
It is fair to say, if between you and the doc you do a bit of “observation” before any action, you won’t be alone among us. As you say, it is a bombardment of facts and risks but sometimes it is best left alone. The positive thing to take here is you now know what’s been giving you issues for the first time. Knowing what it is means you can make the right choices about it whereas not knowing means it might bite without you understanding what is happening.
So… I’m sure others will welcome you in as well but WELCOME! You’re among friends. Discovering an AVM, armed with Dr Google is scary but there are lots of people here to bear witness to ongoing life during and after an AVM.
Very best wishes,
Hello Hdel and Welcome to the group
So glad you found this group on your own. It is standard that an angiogram is done first cause that is the only way the drs really know what is going on. My scans showed mine was retrograde blood flow, but the angiogram showed it was more complex than the scans.
Now please search the drs list on here. since the website changed I am not sure where anything is anymore - maybe Richard can point you to the list of drs on here. You need a dr who has been doing this special area for a long time. These are rare and even my Stanford Dr - Dr Michael Marks who see’s people from all over the world only sees about a dz people a year with the type of avm I have - so you want an expert.
Secondly please bring a family member or friend with you to your pre op appt so they can help ask questions and take notes for you. Its all overwhelming and hard to listen.
also if you are allergic to shellfish you need to tell them cause they use Iodine and you need to be on steroids before the procedures.
For me I get lots of head pain after but some people are fine. So get your bedroom ready and your food supply. Also the meds can make you constipated so get some laxatives.
Please ask anything here we are all still here to support one another and we all came here and had our freak out.
I will try to answer each of your questions based on my own recovery. I was diagnosed with an AVM at age 10… I had had no prior symptoms until a severe migraine at school. The headache was a result of the AVM bleed, which a CT-scan showed. (I passed out from the pain and woke up from an induced coma 11 days after that, so other than being wheeled into the ambulance, I have little memory of my early days in the hospital.) My AVM was in the left frontal lobe.
The first treatment for me was just having the bleed drained. I spent less than three weeks in hospital and had the Gamma Knife surgery six months later… like you though, it was really just a lot of waiting and being very careful in between that time.
I know how you feel about being bombarded with information… at age 10, they put me and my family in a room and made us watch a video about the surgery I was to have… so obviously I started crying because it was terrifying to watch someone getting a frame screwed to their head and realizing “This will be me.” (Some children’s hospital to show me that!!)
As per recovery, the Gamma Knife is a slow process because it takes 3 to 4 years from the AVM to realize it is not getting nutrients anymore and then die off. After four years of routine MRIs and then an angiogram, they found two problem areas they had missed! They attempted to treat it with embolization, but they found the vein did not feed directly to the AVM area. So my second gamma knife was in 2012, and now after a few more years of MRIs, I am pretty much AVM-free… the symptoms from the bleed though will probably never leave – fatigue, short-term memory loss, and a personality change.
Please let me know if you have any other questions, and I wish you all the best!
Thought no 2… time is a great healer. The process of “discovery” that you’ve been through is a proper rollercoaster. It will get better, honest.
I had my AVM rupture way back in 2000. It was in the left side of my brain in between my temporal lobe and Parietal lobe. When that happened it was a long recovery. My speech and eyesight were what were damaged. To this day things are a lot better but 2 crazy years of therapy and four surgeries. Life is normal now speech is normal eyesight Ok but bad right peripheral Vision. Dr. said if they had found it could have been stoped. Reason why it wasn’t spotted was I was just a 10 year old boy.
Hi Hilary. I’m so sorry that I have only just seen your post. My name is Lulu, I’m 43 and live in the UK. I have an AVM of the Cerebellum - the part of the brain which is deep down and responsible for balance. When I was 12 I began to get severe migraines which got progressively worse in pain and length. Two years later I was sent for a CT scan which revealed Hydrocephalus. I have since had 4 operations to insert and revise a Shunt. My AVM is unruptured though. I have always been advised against treatment since the thing is so deep. It was deemed too risky. Fortunately though I suffer few symptoms and am able to carry on life as nomal - aside from the awful knowledge that I have this of course. Over the years I have had no choice but to accept it Best of luck with whatever happens to you from now.
I’m not sure where you live, but please make sure you go to a Neurosurgeon who is familiar with AVMs. AVMs are tricky and they must be worked on and discussed with experts. This diagnosis is scary for many of us, but often times we do have good outcomes, so the best thing you can do is to turn your fear into action and advocate for yourself. Can we help you find a doctor? Hang in there Hilary and one big hug
Hi Debra- thank you for your response!
I’m from Pennsylvania, but willing to travel. I’m meeting with my doctor this Friday to discuss the treatment option that he and his team think would be best but I also plan on getting a second opinion. (He now wants to treat because they found two aneurysms within my AVM when they did my angio last week.) I’m currently trying to get in touch with Dr. Connolly from Columbia because I’ve heard great things about him and his entire team. If not Dr. Connolly then I will try to see Dr. Rosenwasser at Jefferson. Both Dr. Connolly and Dr. Rosenwasser seem to be highly recommended on this site and have lots of experience with AVMs.
Open to any other suggestions that you may have
Hi, Hilary! I am also new to the site but have a 23 year old daughter with an AVM which was found in Nov 2015. She had two Grand Mal seizures and that is how the AVM was discovered. We live in Fayetteville, Arkansas and at that time we were lucky to have a neurosurgeon here who specializes in AVM’s. She has had three angiograms and two MRI’s to monitor them. And his recommendation has been to observe and not treat. We too were horrified by her diagnosis. It has been a rollercoaster for us. The AVM is located on the left side on her sensorimotor and effects the right side of her body. She is on two different seizure meds and still has “episodes” or small seizures that cause numbing and tingling in her right hand, leg and foot. She has bad headaches after these episodes.
Two months ago her doctor told us he was leaving for Kentucky so we have had to find another Dr. We have found one in Dallas but he’s opinion vastly differs from our other doctor. He feels that he can remove Paige’s AVM. We discussed several different procedures. Every Wednesday there is a panel who meets to discuss patients and we are hoping they discuss her tomorrow. He wants to do a functional MRI (never heard of this before–has anyone else??) and then discuss surgery. Having two different opinions has left us wondering about everything! Do we do it…do we watch it?? It sounds like you have two great doctors which is such a blessing and a comfort. I want to respond for two reasons…we have been right where you are not too long ago. So please ask anything and I will try to help and two…to tell a little (or a lot!!) of Paige’s story in hopes that someone will reach out to me! Paige wants to close her eyes to this site. It becomes too real for her even though she has dealt with this for a little while. She doesn’t like reading about peoples surgeries, side effects or treatments. I, however, want to know what to ask that we aren’t thinking of. What the recovery time could be. What side effects could we expect. Thanks for letting me ramble!!
Hi Hilary- I actually had an AVM in my tongue, so I don’t have person experience with a AVM in my brain. If you scroll up on this post, somebody posted a list of all of the doctors who have had positive reviews by our members. So please be sure to take a look at that when you are able to do so. Make sure you get copies of all of your images and notes from other doctors so that you can forward it to the doctor who you want a consult with. Try to get family or friends to help you make that decision too. Family and friends are a big support system for us so be sure to solicit their support. Hope this helps and keep us updated!!
Welcome to the group. Your fear is evident in your post. We understand where you’re coming from because we’ve all been there. My AVM was in my Cerebellum and it was found after it ruptured. My bleed sealed itself which was a miracle in itself. During the rupture all I felt was un-Godly pain. I was in a coma for weeks and after that, I could not walk. I had to re-learn how to walk. After that it was all about getting better, and eventually I did and you will too! It’s been 2-1/2 years since my rupture, and I thank God everyday for keeping me here. We are here to encourage and support you. You don’t have to take this journey alone. Reach out to us and we’ll reach back. Trust me, Prayer and Patience works…
Apologies for the delayed response, I’ve just spotted your post.
I think I can contribute to the research you are wisely asking for, so hope my past experience helps you.
How old were you when diagnosed?- 4 weeks off my 50th birthday.
Has your AVM ruptured?- Yes
If so, when?- 5 years ago
What symptoms alerted you that you needed to get help?- Sudden severe headache combined with dizziness, as the room started spinning and I began throwing up (i learnt later on, that these were the 3 key symptoms of a brain injury)
What are the do’s and don’t’s of living with an AVM? - the medics advised me I could do most things apart from- a) anything that could raise my blood pressure; e.g. Strenuous exercise. And avoid getting constipation, as the pushing is strenuous for your head apparently! B) fair ground type rides spinning your head etc; c) no contact sport where my head could collide with some force.
What treatment did you receive, if any? - gamma knife surgery 2012 ; wait 2 years; undergo cerebral angiogram procedure to test if the surgery had obliterated the AVM(it didnt); gamma knife surgery 2015; wait 2 years’ undergo cerebral angiogram test which is due later this year.
And if you did receive treatment, what was recovery like?- gamma knife surgery only prevents the AVM further rupturing, it doesn’t actually repair the permanent brain injury. So looking for ways to manage the brain injury symptoms was the aim for me (dizziness;mental fatigue’ short term memory problems’ multi tasking difficulties; cognition impairment; visual impairment ). But God brought me through and I’m still here to tell the tale, so God clearly hasnt finished with me yet!
I think the best advice for recovery is … be kind to yourself. Be patient with yourself, don’t push yourself in the early stages after a brain haemorrhage. Mental fatigue is the worst symptom to cope with, and needs you to take regular rests, and minimise noisy environments.
Stress isnt helpful for AVMs, so any opportunities for relaxation or exercise are great I’ve found, I do Pilates, swim and enjoy spa days and aromatherapy massages etc.
I wish you all the best with your future and the decisions you make.