Hi all! I'm a new member with a left occipital avm

Hi all, it’s Monica from Spain. I’m 33, have 2 kids and found out about my left occipital brain avm when pregnant with my son last year. I went to the eye doctor as I had about 3 migraines with aura during the previous months and they recommended a mri. That’s how i found out about the malformation.

I wasn’t able to do any more tests during pregnancy and had my baby without pushing. Basically the doctors pushed him out…but no cesarean was needed.

I had an agiogram last week, a regular mri and an active mri where they had me look at an image to see how far apart are vision cells from the avm. I’m now waiting on doctors to determine what’s the best procedure in my case to get rid of the avm.

I’m so mad today because i got a call from my insurance company saying my policy cost is going up 28% and they won’t tell me why. I’m sure it’s because i went to see a neurosurgeon through them as the first visit. I decided to go through the public system here in Spain after that visit as everybody says it’s better for these type of health issues.

I will keep you posted on the trype of treatment i’m recommended and i’m sure i will have lots of questions after that so i will appreciate your help :slight_smile: also please feel free to message me if i can help you, I have very little experience here, but i’ve had 2 babies having the avm so maybe that can help someone!

By the way, i have to add doctors told me the migraines with aura probably had nothing to do with the avm
But reading through some comments here i’m pretty sure it is related.

What scares me is: i’m 33 and the migraines started when i was 30. My avm has never bled but are the migraines a sign that the malformation is getting worse? Just thinking out loud. I worry specially when exercicing lately.

I already feel better thinking there’s a whole community here to share our worries, good and not so good experiences…so thank you for reading this!

Monica, welcome to the site. Its great you’re here, and sure sounds like a lot going on for you. You’re well on your way to getting some answers in respect to treatment options, a definite kick with the insurance news. You’ll find a tremendous amount of experiences here dealing with AVMs, and a lot of varied treatment experiences. Great to hear about the children and that went well despite the AVM. I have an AVM in my left temporal that bleed last May, I had gamma knife almost a year ago and go for my first MRI since treatment in three weeks. I have two children as well, 12 and 13, they are awesome and know way more about AVMs than most! Take Care, John.

Hi John, thanks so much for your kind words and the best of luck with the MRI. I’ll see you around :blush:

Hi Monica, I am also a new member and just saw your post. My son was diagnosed with a left occipital lobe AVM just like you back in January. Also just like you his was found due to frequent migraines as well. No bleeding or seizures. As a result you are blessed with the gift of time to really understand your best path forward. We were able to see different neurosurgeons and radiation specialists over a 4 month period before making our final decision. I will say that the initial steps your doctors have already taken including the functional MRI are the right initial steps. Not many places can do a functional MRI so this feels positive to me about the capability of your medical team. Depending on how close your AVM is to the visual center will determine the risk of surgically removing the AVM. The left occipital lobe is responsible for processing the field of vision in both eyes so this factor needs to be treated very carefully…but I will tell you that you will have options to treat and will have positive thoughts on your outcome. Happy to answer any questions along the way. Jeff.

Hi Jeff, thanks so much for your message. i was just reading on your profile that you opted for Gamma Knife. I hope that went well. Has you son seen his migraines improve after the treatment? How is he feeling? I’m a bit scared as I’ve read about some of the side effects and it can be discouraging. Thanks again for sharing your experience.

Hi Monica, His current headaches are not migraines they are localized on the left side of his head where the radiation was targeted. The brain becomes irritated in that area so the headaches could be from the brain swelling or the blood vessels becoming irritated which means the treatment is doing its job and breaking down the AVM. In fact he had an MRI done last week to make sure he didnt have a bleed and they said the AVM was slightly smaller…which is good news. We were told that the headaches are very common with GK radiation and should be temporary but am also worried about this. Besides these headaches he is feeling fine. As for the migraines…over a year ago he would get a migraine about once a week and then the frequency went to almost everyday which is when we got the MRI and he was diagnosed with the AVM. For whatever reason a month later the migraines went away for about 2 months and now they will happen every 2-3 weeks.

I completely understand your fear as we felt the same way for at least a month or two after his diagnosis. I didnt sleep at all. I wish I found this website as it would have made me feel better about what is going on…Instead I went to work to understand everything on my own…after we started getting information from doctors and I started to understand all options I felt better. We are not scared at all now. We made our treatment decision and now we focus on getting through the next 3 yrs and hopefully 100% obliteration of the AVM. Hang in there, you will get through this as well.

Monica,

Welcome to AVM Survivors! It is great to have you with us and I’m glad you’ve found a few friends already!

I have to say that I would definitely relate your migraines to your AVM, though if your AVM is fixed, it doesn’t always follow that the migraines go away.

The AVM can be over-pressurising the veins in the vicinity which might be changing the blood flow by flowing less than it should in some places and more than it should in others, perhaps reducing the oxygenation that some parts of your brain are getting. If that causes migraine or migraine-like symptoms, then I’d say they are connected (but, like you, I’m basing this on what I’ve read rather than being a doctor).

I can tell you I’ve never had a migraine but I had some aura after my embolisation procedure and after my angiogram. Whether it was different pressures or iodine contrast or what, I don’t know but messing about in your brain can definitely trigger things like this.

I think it is possible that your AVM is developing slightly but I believe such development is generally very slow, so there is no need to rush and have an operation tomorrow. In the UK, the process from diagnosis to treatment typically takes several months. I was advised to not smoke, to cut out coffee (caffeine), chocolate and alcohol, to reduce my blood pressure and take the pressure off my AVM. It definitely helped my AVM for a while, though I also believe my AVM was developing over time.

I was advised that if I had sudden changes in your symptoms to go to the doctor / hospital straight away and if my symptoms changed more slowly over time to ensure i kept my doctor appraised as to what they are like.

We are here to stand with you. Welcome!

Richard

Hi Monica I wish there was no such thing as arteriovenous malformations. But there are. I had one in the right occipital lobe. This was a long time ago when I was 8. I am 67 now. But I am living proof that you can have a good life despite the challenges. My 3/4 of a cm AVM started showing symptoms maybe 6 mos before the big bleed. They don’t usually show up in kids and bleed, ls what I have read. They tend to bleed when they are very small. I had headaches, spots in my vision, and noise in my ear. No one believed me. We were a big family, and my grandmother lived with us. She believed me and though she never drove, got someone to take us to an eye doctor. She heard spots in my eyes, and was worried. I atill have the 3 x 5 card the doctor wrote on with her name on it as guardian. She wasn’t. But my mother was… I don’t know what she was. The spots were blind spots, and I was sent to a neurosurgeon. Before they did too many barbaric tests on me, I had a bleed and a big seizure and a coma for a few days. They took the AVM out successfully, even though they did not know what they were looking for. They thought I had cancer. I did lose the rest of my left vision in both eyes. I had two kids afterwards, and no one ever mentioned AVM. Rather amazing I am alive and have had a life that mattered.

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Sorry. I posted before wishing you the best and saying keep in touch. beans

Hi again!

@jrichard thanks for aharing your experience. I hope the migraines go away. Side effects are a pain, but as you said it must be the treatment doing it’s job. Best of luck to your son. You sound like such a good father. Your son must be so proud.

@DickD thank you for sharing your knowledge and experience. Here in Spain the process is slow too. Steady but slow. Plus for me, being diagnosed when pregnant has made it even longer as for 9 months i coudn’t do much. But i’m so happy the baby is healthy and completely fine. When diagnosed i wanted to get over this already and wated everyting to just go away but i guess you soon learn it’s not a matter of days and that you’ll probably end up living with the avm for a while…patience, right? :wink:

@beansy such an amazing journey. Thanks for aharing your story. You must be a strong woman. What an angel your grandma. So glad to read that after all you went through you are ok. By the way, i loove your pict. :blush:

I started having migraines at 29 first sign of my AVM at 33.

Hi @Triumph i saw your profile. I saw your profile, how did gamma work for you? Sorry to ask but i’m interested in gathering as much info before making a decision. I hope you are well now!

Hi, I still have migraines . The first GK was good no side effects second one short and long-term memory loss. I am doing well the memory loss is frustrating.

Hi there and welcome to the network!

I, too, was diagnosed with an Occipital lobe AVM. Mine was underneath an active bleed. My eye doctor suspected it due to some vision changes in my peripheral right side. The bleed was over an inch wide and caused a stroke.

I was given the options of radiation, Craniotomy, or Onyx Embolization. Because the chances were best with the Onyx, that’s what I chose. I had this in July. Since then, the migraines continue. I’m starting Botox for those this coming week and truly praying for relief.

I’ve had migraines for several years as well as other symptoms such as whooshing in my head when I laid flat, dizziness, etc. I did not listen to my body and discounted the symptoms.

I’m hoping you have a full recovery and that you get lots of love and support from your friends, family, and network. Also hoping the insurance issues get worked out.

Blessings,
Rhonda
:butterfly: BRAIN AVM SURVIVOR, 2017

@Triumph i wish you the best. Thanks for sharing your story.

@Rhondaleesings you truly are a strong survivor. I hope you get relief on your migraines with the botox treatment. A warm hug from spain :blush:

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Thank you so much! Well wishes to you.

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Hi all! I just wanted to give you an update in case It can help anyone. I went for Gamma Knife last week in Ruber Internacional, Madrid, Spain. Dr. Martinez & team was amazing. The hospital really nice too. Doesn’t feel like the typical hospital so that’s always a plus too. The room felt more like a hotel.

I’ve seen a couple of hospitals around the country and i’ve been told it’s the only one that offers Gamma Knife for now.

The procedure went surprosingly well. I was really scared about the frame but i coudn’t feel it at all with the local anesthetic. It was painful on the 4 points after they removed it but with the painkillers they administered i was completely fine with a few hours.

The thing is I took the fast train back to my city the following day and i had some sort of seizure. There happened to be 2 neurosurgeons on the train and they told me i has having a seizure. But then i called my dr. And he said it probably was an allergic reaction to the enesthesia used on the arteriography and that it caused a panic attack. I’m not sure what it was, but it started with flashes on my right eye, i smelled something burned/metallic and my heart began racing and my arms and legs shaking. It lasted about 1h and it wasn’t fun. I had the feelig i would start convulsing anythime but didn’t

It’s been a coulple of days and it hasn’t happened again but my sense of smell is really active. Anything will bother me and i’m worried that it’s going to happen again.

I’ve been given epillepsy meds, for now a really low dose to start with and will go for an electroencephalogram in 2 days to try to see what sort of activity is going on on my brain.

Just thought i would give an update.

I hope you are all good.

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Hi Monica,

Thank you for your update! Great to hear your GK went well - I might be having it done too later this year so hearing your experience with the head piece is a relief :relieved:

That seizure or allergic reaction sounds terrifying. I get the same visual symptom where I go blind on the right side of both eyes temporarily - can’t imagine having to cope with your other symptoms aswell! Hopefully it was a one off but I am glad they are investigating the brain activity just incase.

I will be going to see a neurologist for the first time since my hospital stay in Jan/feb tomorrow. I was lucky enough to get a cancelation appointment rather than waiting until 27th june to be seen. They are investigating my visual symptoms to see if it is seizure activity aswell.

Please let us know how you get on, will be thinking of you.

Best wishes,

Corrine

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Thanks so much @corrine will be thinking of you as well. I’ll let you know once i have an answer on my case. Very similar symptoms here too. I saw the neuro after the GK which should have been done before probably but sometimes i feel i’m walking on the dark here, i feel as nobody can give you all the answers, and i understand every doctor specializes on their own thing but of course we would want to know everything at once. I was told the visual issues might be due either to 1) seizures or 2) that the avm is “stealing” blood from healthy tissue around it so that the vision cells don’t get enough blood. Bare with me, that is exaplined in my own words. So that is what they are looking into now.

I asked how i could have stopped the seizure the other day on the train and doctors told me that Diazepam under the tongue should have at least minimized the situation. So I carry it with me all the time now just in case. It is probably not to be taken lightly and i dislike to be taking so much medication anyway, but It makes me feel more secure now to know that it might help. Not sure if anyone has any experience with it here.

I wish you the best :slight_smile: