Newbie in Petaluma

Hi AVM survivors,
I just found out through a MRI that I have AVM next to my speach area of my brain. I kept saying the wrong words and I’m getting confused a lot.
I only got a call over the phone letting me know about my MRI. I have to wait until January 15 for a CT scan and then I will see a neurologist.
I just wanted to say hi and thank you all for the information that was posted. I’m so scared. I hate waiting for more information.
Happy Thanksgiving everyone.

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Hello and welcome, don’t be scared, you’ll just freak yourself out, it’s been there all along and you just didn’t know it, so know you know why you were having some issues, waiting is hard we all know but in the meantime try to be positive and don’t worry about the unknown, we are all here for you and everything will work out fine, it is what it is, take care, happy Thanksgiving to you,

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Karen,

Welcome to our little site! I can certainly understand the worry and the wait. I was doing the same as you last year. Welcome in, have a little look round (but be careful not to frighten yourself even more) and tell us what’s bothering you.

I would say that it is very frightening at the start but getting to know more can help you understand what’s ahead and worry less, hopefully, about what it means. I’m one of the least capable people of getting through any kind of surgery and I got through an embolisation procedure just fine last spring.

January sounds like a long way away but you can use the time between now and then to learn about it and be more prepared.

We’re here to help.

Very best wishes,

Richard

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Hi Karen,

Welcome to the site! I was diagnosed back in May this year so still have fresh memories of the initial fear upon diagnosis. Not having all of the information infront of you yet and the not knowing what is to come going forward with the diagnosis is a difficult place to be :confused:

As @DickD says, right now is the best time to read up on the condition and treatments available. Also connect with people with an AVM in the same location to you if possible (I have found both this site and AVM facebook groups helpful for this).

I think the latter is really important personally, because talking to the doctors they can be very blunt. They have to be honest of risks you face with the condition and potential treatments as part of their job. That put me in panic of my life being potentially in ruins. I talked to people with an AVM in the same location as mine who do live with health deficits as a result of their AVM. Seeing how they have been able to adapt with time, and lead happy fullfilling lives was a big relief and inspired me. Seeing the reality of these potential health deficits the doctors were talking about rather than the dramatic panic driven picture I had in my head really helped. <3

Would be good also discussing with your neuro about getting an angiogram too since from what I know (and I am not a neuro) they produce really detailed scans for brain AVMs.

I am here if you ever want someone to vent to welcome to pm me :slightly_smiling_face:

Keep us posted on how you get on,

Happy thanks giving x

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You all brought me a thankful Thanksgiving. Each one of you said exactly what I needed, and wanted to hear. I’m staying calm and focused on a day at a time. No worries now that you-all are a message away.
Thanks for caring.

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Thought I was going mad, I am the same using the wrong words and getting confused, I am 77 and my DAVF diagnosed 2011 although looking back I think I had symptoms way before then, seen neurologist, Had an angiogram , all the other test frequent mri scans but still my Dr at Walton Centre Liverpool doesn’t seem to want to intervene. just wants to treat it conservatively, oh I have a small aneurysm as well. I have pains in my head every day, bouts of dizziness, and worst of all Hallucinations, MY GP said as they occur on the brink of sleep or just on waking they are called Hypnogogic Hallucinations, which are not dangerous and quite common, but I feel it is a coincidence they started around the same time as my DAVF was diagnosed, I wonder if anyone has experienced the same.

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Yes, at 53, have simular issues that seem to be getting progressively
worse buy not as severe as yours, not yet anyways, and I had avm removal
30 years ago,

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I haven’t had hallucinations upon awaking but going to sleep I have. I’m
new to all this and am only sure that everyday I’m getting worse with
speach and memory for the last few months. It seems to be coming on quickly
all at once. I wonder why this is.
I’ll keep in mind what you shared and let you know what I experience along
my journey.

Hi, Karen!

Welcome to this site! I recently found this site and was overjoyed! I am so happy to see it exist for our unique band of brothers and sisters! I would have given anything to have any kind of support years ago when I was most blessed to survive a ruptured cerebellar AVM. I could only locate ONE book at the library, written by a survivor. That was it!

As others have suggested, use this time to research your condition. This will help you formulate questions for your visit (write them down!). This will help you feel a little more in control, too. Bring questions to your friends here…we can bring real-life responses.

One final suggestion: If you find your symptoms and deficits intensifying and/or multiplying, don’t hesitate to call your doctor. My only symptoms were a SUDDEN headache followed by a cold sweat from head to toe. I called “911”. (No signs/symptoms prior).

I will be checking in to see if you have any words for us. Take good care of yourself! :heart:

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Okay good to know. I’m glad things have changed and I can get information on my AVM. I’ll be picking up my MRI today to check out myself since I don’t get to talk to a doctor till the end of January. If I get worse I will try to get a doctor’s appointment sooner.

Hi Karen. Welcome to the site. I know you are scared and you have every right to be. We were all scared when first diagnosed. Lean on your family, friends, God or higher power to calm your fears. You can always lean on your fellow AVM-ers here on this site to offer support and encouragement. Do not entertain anyone who is not of a positive mind. There is no room for negativity on this journey. I wish you the best.

Sharon D…

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Brain: There is a small cluster of serpiginous flow voids in the anterior left middle frontal gyrus. These apparent flow voids extend to the overlying dura. This region spans approximately 18mm transverse and 6.9mm anterior posterior. There is heterogeneous increased T-2 signal around this region. Few scattered punctate and patchy foci of increased T-2 signal are seen in bilateral frontal white matter.
Conclusion:
Finding consistent with AVM of the anterior left middle frontal gyrus with adjacent gliosis, in the vicinity of Broca’s area. Recommend x-ray or CT angiography to further characterize this finding.
Minimal bilateral frontal white matter non - specific signal change.

If anyone can shed some light on this topic I would be grateful.

Karen,

Let me have a go by translating words that I’ve looked up myself some time ago. I’ll tell you the same text but with English words, if that helps… here goes. Note, this is my understanding based on trawling the Internet, not based on any medical training (I’m a computer scientist, not a doctor)…

Brain: There is a small group of wavy-shaped “flow voids” in the front part of the left, middle frontal gyrus. These seem to extend into the layer that covers your brain. There is irregular (i.e. not regularly-shaped or distributed perhaps) increase in a T2 type MRI image in this area. There are a few scattered, dots and patches of increased T2 signal in frontal white matter on both sides.

This imagery is what might be seen if you have an AVM in the front part of your left middle frontal gyrus. There is some evidence of a historic bleed (the gliosis).

I think the “gyrus” merely describes which part of the frontal lobe is affected.

On an MRI, “flow void” means that the flow rate of a liquid (eg. blood in a blood vessel) may have been travelling at exactly the same speed as the scanning rate of the MRI and appears as “no flow” on the scan. It is possible for it to be merely that there is flow but it is not detected, or it can be that there is no flow present. I think “flow void” on its own is unhelpful. However, the other signals, like the T2 signal suggest there is something going on hereabouts, so worth looking at through a CT scan or angiogram.

T2 imaging is a type of scan used by the MRI machine. “Increase” or brightness on the scan for T2 imaging indicates an increase in water or methemglobin which from an article I just found indicates something going on there. So there’s a bit of water-retention or something going on around the flow void bit.

In conclusion, the radiologist is indicating the scan looks like an AVM but other methods are needed to understand more.

I think everyone has a bit of white matter going on. I think that bit is reading as not related to the AVM. It doesn’t sound like an action point.

Does that help?

Richard

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Wow you really took sometime to help me. I don’t know what to say I am in awe.
You explained it in perfect English. I can see what their saying now thanks to you.
So I won’t think ahead to much because it’s all a little uncertain right now.
January 15 is so far away LoL. Whoops I’m thinking ahead.
Thanks I was hoping someone would help me understand and that someone was you. TY

Karen,

You’re welcome. My job in IT is largely to explain business problems to people who only speak IT techno babble and to translate the techno babble back to English for the business guys, so I’m pretty used to taking nonsensical stuff and trying to make it sound English.

I completely agree about not thinking too far ahead. I am not convinced that it’s a good idea always to try to understand technical stuff like this. I translated my MRI scan eventually into English and there are things on that which, when you first read them, make you think “OMG! I’ve got that as well!” as sometimes the report shows stuff that’s not relevant to the current investigation. To a great extent, trust the doctors to interpret these things and don’t worry about it.

Very best wishes,

Richard

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Hi again, Karen!

Richard did an excellant job of translation, I agree! I am a patient/nurse, not a doctor. The radiologist’s job is to describe everything he/she views from the image(s), then advise. I think you will see (and Richard please correct me, if you disagree) that angiography is the “gold standard” in confirming AVMs.

I have to advise, if you feel something is REALLY troubling, like a sudden headache, go to the ER. Your doctor’s office would tell you the same. If you live in Petaluma, there are resources to treat AVMs in the Bay Area. This should be encouraging.

Be strong!

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Thanks for letting me know information locally in the Bay area.
I live right across the street from the hospital so I’m blessed there. If I get a bad headache I will head on over.
I also have a ventricle heart valve that is at a level 3 out of 0-4.
I have a reveal link in planted with a USB monitor.
Wasn’t sure why I passed out ever since I was 3 years old.
I wonder if it’s related to my AVM since it can cause a lack of circulation.

Hello @Karen62 Welcome to the site and the group- I live in the Bay area as well but in the peninsula but I am often in Sonoma as I have a bunch of family who live there-
Where are you being seen?
I suggest going to either UCSF and seeing Dr Lawton or Stanford Dr Michael Marks.
I saw Dr Marks but have seen Dr Lawtons work.
From what Dr Marks told me their approach for treatment for at least what they use in an embolism is by experience so you dont want some young doctor practicing on your brain.
As someone who had a massive stroke 6 months prior to my avm and was in a coma and had to relearn how to speak walk etc - You want an older doctor to be your doctor.
If you want to chat private msg me or if you want to meet for coffee tea or donuts let me know-
I was freaking out big time when I was diagnosed and the people on this site really were a life saver.

hugs
Angela

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So far a MRI was done because I use the wrong words often and I’m starting to get confused a little.
I was told over the phone by a fill in Doctor that I have AVM and she had me schedule a CT scan. My appointment for that is January 15.
After that I’m sure I’ll get a referral to see a neurologist.
Hopefully I am referred to UCSF or UCLA.
When that time comes I would love to meet for coffee while I’m near you.
Thanks for reaching out. I may be alone but I feel safe among these walls of the AMV survivors Network.

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@Karen62 Do you know if you had an MRV and spin labeling with your MRI? I never had a CT Scan- not sure why they are doing that test
Do you know what part of your brain the avm is ?
Angela

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