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AVM Survivors Network

New to My AVM and new to accepting I have one

Hi (wish I could greet you all by name),
My name is Dani and I am a 29 year old who just recently learned what an AVM even is. I learned this acronym after a 4 day stay in the ICU and after what was assumed by many doctors to be vertigo. Years of dizziness, loss of vision, and moments of deep confusion. during those years no brain scans were ever ordered.

This past August, I knew something deeper was happening. I could sense it. I had never had a migraine, I had never been so spatially lost and confused and had never experienced loss of movement of my legs to the point of full body spasms which resulted in temporarily not being able to stand. Unfortunately this was all happening as I was having to be strong as the maid of honor at my only sibling’s wedding. (Which put off me seeking any medical treatment) On the route back home from the wedding I lost all control of my hands, my right leg, and movements of the mouth. No one could understand me. I felt like I was communicating and thought I could hear the words, or more so slurs, coming out of my mouth. After seeing my pcp thinking again it was vertigo I left her office thinking, knowing this was different.

I went into a walk in ER clinic directly after seeing my pcp, where they gave me a CT scan… and to be honest I thought this was all a deep level of this vertigo, and a dumb expense I was having to pay because my boyfriend was scared or tired of me complaining. When the ER walk in clinic doctor came back into the room I could sense his new vibe. He explained to me I had recently suffered an active bleed in my brain and needed to go to the “real ER”, as they called it, and not now but 4 days ago. I sat in disbelief as they ran another CT, MRI and I waited in the ICU for an angiogram.

It happened so fast. What was a migraine and thought to be vertigo symptoms turned into the change I never imagined possible. All of a sudden an active 29 year old passionate single female worried about little things like sneezing; I have lost my peripheral vision. I have hope in my new medical team helping me but my insurance from a new job doesn’t start till Dec. every time I have a bad headache, everytime I have short term memory loss, and every time I have to use the restroom I am afraid.

I’m putting this out in the universe, just to say: Hi I’m Dani, I have an AVM, I have a date my insurance will kick in to help these costs, and the specific surgery day, but I’m also in a strange waiting period. Thank you all of being a part of chat boards like this… some of us are now new to this condition, medication, decisions, and fear.

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If I had a dollar for every time I was told my AVM was “vertigo”, I would be a very rich woman. Be thankful that you now have a diagnosis and can move forward with treatment. I am so blessed that I live in Canada where insurance is never put before need for treatment. My best wishes to you.

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hi Dani and welcome to the site; a lot of similar experiences and good people on here so you are not alone.
yes finding out you have an AVM is a life-changing moment and it takes your breath away. be strong, listen to your doctors and take it step-by-step

Hi Dani, and welcome. You are among friends here, and will find a lot of varied experiences, but mostly understand one another despite the wide range of types and symptoms. The waiting periods are tough, I had gamma knife and it takes years to work always wondering what is next. Being afraid, uncertain and anxious is, in my mind, a normal response to something abnormal. Lean on us, there is amazing people in our community. Take Care, John.

Hi Dani! Welcome and I’m sorry! AVM is something the majority of us never hear until we’re in the ICU or doctor’s office after a life altering experience similar to yours. It took me six months of repeat visits to Emergicare, PCP and an ear, nose and throat Dr (he assumed I had Menier’s disease-vertigo) with a ton of high dose anti-biotics before a CT scan changed everything. 4 years later with ongoing treatments at Mayo Clinic in Phoenix (embolizations) and I’m thriving. While I lost hearing on the right side and have occasional migraines and nerve pain, well-managed with medications (Aimovig and Lyrica), life is still good. There is hope!

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Welcome to the family Dani… my prayers and thoughts are with you at this time and I hope things work out rather sooner than later for you… you are not alone… God bless!

Hi Dani,

I’m TJ and I have an AVM in my left shoulder, neck and up into my brain. I have had it for 41 years.

Oh and for the record, my doctors (and I have asked several of them - at Mayo) have all said that there has been no studies that have shown a sneeze or a …(keeping it clean here) caused a bleed. I’ve always been told avoid hard manual labor - like routinely moving 30+ lbs at a time, and don’t shovel snow. Hello snow blower!

Is it just me? The more I reserach the more it seems Doctors really have no idea what causes, how to treat or cure?

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Hi Dani:

Welcome to the AVM-ers! We are here to support and encourage you as you begin your AVM journey. We all remember the feelings we had when first diagnosed. We were scared “it-less”. We didn’t know what it was, why it was, or what was going to happen next. We will offer up our experiences. We will let you vent to your hearts content. And, we will share knowledge that we’ve acquired on our journey’s. This support group was a life-line for me and it can be for you as well. Why? “Because we get it. They don’t”. I leave you with this piece of advice that has worked for me…
“Prayer & Patience”. Again, welcome.

Sharon D…

Hi Dani and welcome to the site. Before my AVM was diagnosed I used to get really bad headaches with vomiting. All my doctors told me they were just migraines until years later a CT scan showed up a ‘shadow’ on my brain and an MRI proved I had an AVM. So sorry to hear what you are going through. The shock of finding out must have been enormous. Best wishes for the future.

Lulu x

Oh Dani~
Sometimes I wish I had gone through those feelings instead of mine which had been a sigh of relief because I just knew in my gut like legit my whole life that this was something more serious but no one listened to me and therefore when diagnosis came so did the anger until I accepted that I had an avm and it had robbed my whole life rather than kill me (or at least what I thought was life) and then 4 months later it hit with a vengeance and legit attempted to kill me once more but this time temporarily paralyzing me for months (now it’s just left sided muscle weakness) to be short I got treated and it worked but before treatment I had a level 5 hemorrhagic stroke. My neurosurgeon didn’t think I’d make the night. Oh but I did and he put me in a coma to let my brain unswell but it had apparently been one of the worst bleeds he had ever seen. Although I have progressed ALOT these past/ years since, the anger remains. Why me?! You’ll get through it though. We AVMers are tough cookies :slight_smile: chin up dear!!

@D_Marzz Welcome to the group - so glad you found it. I am glad you got the ER and sorry about the other misdiagnosis. I never went to the drs I was just thinking my low blood pressure was getting worse and then when I started to pass out and hear a whooshing I then mentioned it and my dr said you cant have this rare brain thing called a DAVF…well the rest is history…we are here to support you. December will be here in no time. Get your bedroom set up with all your comforts and get some great sheets and great pjs for after your treatment. Obviously no working out or lifting anything heavy. Hugs Angela