I’m a 42 yr old female who was just diagnosed with a Parieto-Occipital AVM. I was diagnosed due to a suspected bleed. I was headed to my sisters funeral, and it had been a really hectic week. We where been evacuated due to hurricane Matthew, I had to fly out before airports closed to be a be able to make it to the funeral, I was having a horrific asthma and was on a very high dose of steroids (my asthma does not respond to any med, only steroids), so needless to say I was not feeling so hot.
Once I landed I drove to the hotel and I was not feeling well so the plan was to lay down and head to my sisters house later, but my sisters family called me and wanted me to meet them (thank goodness). As soon as I got to their house I notice I could not speak, they where asking me about other family members coming but I just could not get the words out. I walked up 3 floors and as soon as I got to the 3rd floor I notice everything was very bright, I was hugging everyone and I felt so bad I sat down. I was in and out, they thought my sugar was low so they gave me a cookie and juice. I remember picking it up with my left hand (I’m right handed) and trying to eat it but could not swallow, or I was not coherent enough to swallow, not sure which one but I am leaning towards the latter. I heard someone in the room mention how I was not able to move my hand, I remember looking down to my right hand and trying to wake it up. I also remember falling towards my right side and them trying to keep me sitting straight. They called the ambulance and 9 hours later I was sent home without any test done and them saying that I was just emotional. REALLY???
That was Thursday night, Tuesday I saw my PCP who sent me to a neuro who ordered MRI, MRA, CTA and sent me to a Neurosurgeon. I will be seeing the surgeon today so we will see what happens.
I welcome any opinions as to what I should ask my neuro.
Hi Viv and welcome , I think you will find the following post handy What to ask the Doc , This is an old post but most of the stuff in there is still handy to have. I hope you get good news from your Neurosurgeon, Take care
I also have an occipital avm, do you have any idea how’s big yours is? That will affect treatment options. Because of the location I would ask your doctor what they would do if it was them. Unfortunately it’s difficult to maintain 100% of your vision after treatment. I had embolisation and they are now deciding what to do next, I lost 50% of my vision (to the left) which lasted about 3 months, but it wasn’t as bad as it sounds. I can see perfectly now except for a small blind spot that I only notice when looking at patterns. Every case is different so be sure to directly ask doctors what the effect will be on your vision with each of the treatment options. Good luck! Xx
I still don’t know much. I saw the neurosurgeon and he thought what I had was a seizure and sent me to the Interventionist radiologist. I saw him yesterday and he thinks I had a stroke. He stil can’t rule out the avm until he does the angiogram.
He doesn’t want to do the angiogram until February, he wants to let my brain heal.
So I’m still in limbo and every Dr I see has a different opinion..
I’m glad you have your vision back, I still have speach problems but nothing you could tell if you don’t know me. We will see if this is caused by a bleeding avm or a stroke.
You must not be far from me in South Carolina. My AVM was in the frontal lobe near motor and sensory control areas. I’m assuming you are going to Duke?
Actually I’m in South Florida. I’m going to Cleveland Clinic
I went to dr Ali Zomorodi at duke. Was very satisfied with their work. Emory, duke, mayo and Cleveland are only ones in eastern us. Good luck!!
Good evening everyone. I live is Wisconsin, I am 38 years old. I was diagnosed with brain and spinal cord AVM at the age of 2. I have lived my whole life thus far without treatment. When I was newly diagnosed much was unknown. Surgery was completely out of the picture due to the AVM being wrapped around my spinal cord. I was told not to be too active in sports because injury could cause the part wrapped around my spinal cord to strangle me. My family was always very protective of me. However, I decided as a child I was not going to let it get me down and prevent me from living my life as normal as possible. Though I have struggled with headache management, I push through the migraines. I have 4 beautiful boys.
Now as I am older, not as healthy as I was previously… I have decided to have a work up done. It’s been 30 years since any MRI’s, Angiograms, etc. I’m not sure what is in store, what to expect, how surgical technologies have changed in the last 30 years. I don’t talk with my family anymore about my health issues because they don’t have any positivity in their responses. My mother believes there is no surgery that can correct the AVM. I’m afraid to find out whether or not she is right. But I have jumped in with both feet, my husband at my side to see what I can do to help prevent other things like stroke or death.
I work in health care and a neurologist I work with recommended a doctor in our medical system who does surgeries on AVM’s. My primary MD ordered the MRI and then will see the endovascular neurosurgeon in January to go over results and determine what other tests I should have done.
I guess I am not really sure what symptoms I should watch out for other than high blood pressure and weight gain as they seem to increase the migraines and neck/shoulder/cervical spine pain.
Welcome! It’s great to have you join us and share some of your journey. You sound really strong – need to find out some answers, even if those may not be good – so well done!
I’m very new to all this myself but I have found that keeping my blood pressure low is my best self-treatment so far. I have relatively mild symptoms compared with many here, but by cutting out coffee, chocolate and other stimulants that would increase my blood pressure, I have reduced my headaches and dizziness, so definitely blood pressure is relevant.
I agree. I hope that surgical procedures have moved on enough in the last 30 years to offer the possibility of a relatively safe intervention for you. The chap I’ve seen, and am waiting for a catheter embolisation with, is a leader in his field, including pioneering the “hoovering up” of thrombosis through a catheter in recent years, so many more things are possible now.
It would be good if one of the @ModSupport folk could move your post to your own thread. You deserve a space for your own story.
Thanks Richard, I replied to the post originally, There is a space for Viv to post on her own page and the instructions on how to do this are on the main page, But I felt like she would like the post on the forum as it would get more feedback that way , Thanks.
Hey Viv, That is how my bleed manifested itself: I was waiting for my boys to get home from school, and felt funny, but when they got home I could not speak to them. I just could not get the words out.