I have had headaches on the left side of my brain. I always blamed my glasses. On may 26 I was at work (vault) and began having that tingling in my arm that i had been having off and on for a couple years. This time it was way more intense. It went up my neck and face and down my ribs. It hurt. I started to feel weak. My legs were stiff and I felt like I could pass out. I ended up going home and sleeping. The next morning I still felt quite ill so I went to the emergency room. That’s where they found I have an AVM in my left frontal lobe. I was then sent to another larger hospital for surgery but that didn’t happen. CT scans & MRI with contrast. EEG. Follow ups with neurosurgeons.
They said my AVM is very large. It’s approximate 65 mm. The next step is an angiogram. They don’t seems to be in any hurry as they keep telling me this isn’t new. I have had it since in the womb.
They state they’re analyzing right now as the surgery could cause me to lose language.
Meanwhile I am trying to maintain my position at work and am really struggling. With the headaches, weakness, dizziness, and confusion. Since this diagnosis I have trouble finding word and making sense to others. My boss told me talking to me is like solving a puzzle. It just takes a little time to put the pieces together.
I am afraid and feel alone. As the doctors say I’ve had this. It isn’t new. Everything inside me feels different and new.
Does anyone else have experience with a left frontal lobe AVM that is also right handed?
Hi! Welcome to AVM Survivors! It’s great to have you, though always a shame about why we should come together to meet.
I watched a TV documentary last night about a lady who had a left-side AVM rupture and it had two major effects on her: it affected her right side dexterity and it gave her aphasia which is where it it’s very difficult to get the right word or to sound it out. The documentary is only accessible in the UK, so far as I can tell and I’m not sure that it would encourage you at this point, so I can’t share it with you / you might prefer not to watch it anyway.
I’d say that it is good that they are analysing your situation but it does sound as if something is having a significant impact upon you. I wouldn’t allow them to be too relaxed about getting you in. In the US, it is often a good idea to get a second opinion on the options that you might have for treatment, so whether you can start that process now or need to wait for an outcome, I don’t know. If it was me, I’d get a second opinion as soon as it is reasonably practical.
While these things feel like the most urgent thing to us, often neurosurgeons are pretty cool about things, so it may not be that you should feel they are in any way lacking. However, if you have any worsening of symptoms, especially anything clearly serious, go straight to the ER, do not pass Go, do not collect $100 (as it says in Monopoly). If you suddenly have the worst headache you’ve ever had, definitely just go.
There are many, many others here who have been through this. If you have any questions about any stage of this, just ask. We are all patients like you, so only have our own experience to bring to bear but I’m sure that with sharing, we can help you through.
Hi Christel. It must have been so scary for you, sorry you had to go through that. But you can thank your lucky stars that you went to the ER and at least know something about what you’re dealing with now. People are different but personally I would definitely prefer to know. Please be assured you are not alone with this though. it can feel like a very lonely condition for sure, but I have always found this site a godsend - so many supportive people that know exactly what you’re going through. My own AVM is in the cerebellum so slightly different, but I’m always told it is large like yours. I’ve had many angiograms and the opinion of the neuros is to leave well alone due to its complexity and position. I’m in the UK anyway though and sometimes things are different in the States. At the end of the day this is your body and your life though. Don’t let anyone tell you what to do with it unless it feels right for you.
I too had an AVM on my left frontal lobe. I had 5 embolizations to shut down the blood vessels feeding the AVM. Each vessel was filled with Onyx, (crazy glue) when the blood travel stopped they were able to remove the AVM as if it were a rock. I then had the craniotomy. I have been well ever since. My hospital is Mt Sinai Hospital in NY (Roosevelt Hospital in the past). They work with AVMs at all times. I wish you the best of luck.
My AVM is between motor and sensory on the left side. I am due for surgery in 3 more days. I can tell you that I had an uptick in symptoms after diagnosis. I thought maybe I was going crazy for awhile but when I stopped in some quiet space, what I realized was two things:
1. I always had most of them but really was working hard to mask them.
2. I stopped treating them so they started getting a foothold. Meaning, I thought the numbness and tingling and such in my right hand and face were spinal problems so I was treating with steroids. As soon as I knew what the AVM was, I didn’t turn to steroids and so the symptoms ended up progressing much further than ever in the past.
I don’t know if either truth is there for you, but I wanted to share that with you because sometimes well meaning folks will help you gaslight yourself in to thinking it’s nothing. It’s not nothing. It’s never been “nothing”. You’re doing the right thing now and keep strong. You’re not alone.