Hi everyone. My names Amanda and I am a 28 year old living in the Seattle area of the US. 3 months ago I had a seizure, then another. After the MRI it was discovered I have a 4.3 cm by 2.?cm AVM in the center of my right temporal lobe.
The next plan is to have a consultation with the surgeons and I guess I’ll be getting an embolization.
I do have some confusion, so I do come with a question.
My EEG showed “ sharp waves over the right parietal region consistent with an area of cortical irritability“ but I must not understand correctly. Shouldn’t the activity be in my temporal lobe?
Now, I don’t know – I’m not a doctor – but perhaps, although your AVM is in your temporal lobe, the effect it is having is in your parietal lobe, due to how it is adversely affecting your blood flow.
Welcome Amanda. Can’t help much with your question but I am interested in what your Dr. says! Everything is so connected and I have learned there are often a lot of unanswered questions, or at least definitively answered. It would seem with the brain 2 plus 2 has about a 90 % chance of equalling 4, and a 10% chance of it being something we can’t explain! I hope that makes sense! Take Care, John.but everything is so connected
Hi Amanda, Sorry to hear of all you’re going through. I can relate. I had 2 seizures this month related to an AVM and 2 surgeries. I think you’re doing the right thing by reaching out here and hopefully in other ways. It’s a scary/painful time. I will offer you any support I can give and also just be here to listen. Greg
Hey Amanda,
In years gone by the theory was that certain regions of the brain controlled certain areas of the body. This has now been shown to be false and it is now understood that differing regions of the brain interact with each other to produce an action/outcome.
So, although your AVM is located on the right temporal lobe the focal point or ‘Sharp waves’ can show up anywhere in the brain. In VERY layman’s terms it’s a bit like throwing a stone into a pond, with the ripples radiating out. If you were to throw a 2nd stone into the pond, you’d get a 2nd set of ripples. Where those 2 sets of ripples interact or bump into each other is the focal point and could be some distance from the original impact.
I must also agree with JD
And, yes, it can be ‘such a Confusing and scary time’. We know this because we’ve lived it too, so come talk to us.
I truly appreciate everyone on this forum. I’ve been quietly reading without an account for the last month. You all have calmed my fears this month. I’ve so blessed I found you all. Thank you everyone
Please keep us posted on your journey as our members love to help others here & we definitely want to be here for each other… Hope all goes well… God bless!
Hi Amanda: Welcome to the site and hope you find some answers here along with your medical support there. My daughter had a grade IV AVM 6cubic cm on her right, mostly frontal lobe. Or that’s where it bled anyway leaving her left side severely compromised. She’s now 13 months post devastating bleed and is walking with an afo though her left arm, hand and fingers have not showed much sign yet of coming back.
Without making this too long of a post, my strong advice to you is to get copies of your brain images and forward them to the AVM guru, Dr Michael Lawton, who runs the neurosurgery program at Barrow Neuro Institute in Phoenix, AZ. Barrow has a 2nd opinion portal on their website where you can upload your images for $100 and within a couple of days you’ll get back Dr Lawton’s opinion on how to best treat your AVM; preferably sooner than later. If it can be removed safely before you have a major problem like my daughter he’s one of the best for the task. Please Google him and feel free to message me for any further info I can help with. He saved my daughter’s life. His direct number is 602-406-3489. Blessings to you, Amanda.
Welcome! Sounds like your daughter and you have been through a lot. It is nice to hear of the progress she has made. The continuous progress we hear of time and time again is amazing.
Dr. Lawton certainly is very well known and highly respected and always in the conversation of the best Drs. We are lucky to have a number of greats, he is certainly one! Thanks, and Take Care, John.
I’m in Seattle too - had a brain bleed from my AVM in 2009. Dr. Louis Kim at Harborview is great - he did a fellowship at Barrow in Phoenix under Spetzler and Martin and is very active in AVM research. The neuroscience group at Swedish/Providence went through a lot of changes and upheaval a few years ago. It’s mostly settled down, but their star AVM cerebrovascular neurosurgeon ended up moving on and I’m not sure who took over after he left.
Please PM me if you want to compare notes or need a ride in the afternoons. I’m sorry that you are having to deal with a brain AVM. Welcome to this group. This is a great community and it has helped me a lot. Best of luck with your journey.
So pleased to see that you found this forum. Isn’t it wonderful to locate information that it truly helpful AND people who really get it?
With regard to your MRI and EEG results, if there is ever something you do not understand or seems a bit ‘off’, be sure to ask your physician to clarify. Also, and this is directed to anyone here…physicians dictate so many reports that they may actually make an error. Really. I have found errors in my own reports. I remember reading a report and thinking, “What? That’s not what I told _______.”
Hi Amanda! I also live in Seattle. I had my AVM removed over at Harborview with Dr. Laligam Sekhar. He was really great and I recommend him if you dont already have a doctor set.
