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AVM Survivors Network

Just received diagnosis - Need the AVM 101

#1

Hi everyone. I'm hoping that you can help me out. The week before last I went to the Dr. because I had the flu and it wasn't getting better. I had a headache for about 4 or 5 days which wasn't getting better. I'm not prone to headaches and I attributed this to the flu. Because I have family members with a history of stroke the doctor sent me to get an MRI. I assumed he was looking for a blood clot or something. I ended up having an MRI followed up by and MRI with contrast. The results are posted below. I have an appt. with the neurosurgeon next week, but so far all I have are the results below. A doctor has not spoken to me about the results. I tried talking to my regular doctor, but he said just wait for the neurosurgeon. I, of course, have googled a lot since receiving the results, but I'm having a hard time making sense of the information out there and how that relates back to my specific case. If you could offer any advice, help make sense of the below test etc. I would really appreciate it. Also maybe any questions that I should make sure to ask the neurosurgeon when I meet with him next week. I realize this is a lot to ask and I really appreciate any help you can provide. I feel like I have a decent beginners understanding of what an AVM is, but my biggest worry at the moment is that it's in my brain stem and the likelihood of how this will play out. I'm also concerned that I don't have a good grasp on what exactly I'm up against. Is this something that isn't a HUGE deal? That maybe I'll get some treatment, but I'll probably be fine? Or is this something that is a very serious case and I need to come to grips that the chances of me having severe neurological issues or even death is a high probability? I'm 34 years old. I have no other health issues. I understand that every case is different and there is no way anybody can really tell me the course this is going to take. I also understand that all AVM's are dangerous and can be life altering so I don't mean to make light of it by saying it's possible that it's not a huge deal. I didn't know how else to word it honestly. I'm just trying to get a feel for how worried I should be since I've been a roller coaster of emotions and thoughts since receiving the results. Again, thank you so much.

The 1 cm x 1.2 cm mass in the left side of the pons is again noted and demonstrates enhancement with contrast. This most likely is an occult AVM or vascular tumor. No significant mass effect is noted. The fourth ventricle is normal in position. No other area of enhancement is seen. The mastoid air cells are clear. There is mild deviation of the nasal septum to the right side. The craniocervical junction is normal. Old hemorrhage or calcification is noted extending to the left anterior fourth ventricle. No other lesions are seen. The ventricular system is normal in size with no mass or midline shift. IMPRESSION: Mildly enhancing left pontine mass, most likely small arteriovenous malformation/vascular tumor with enhancement. No other lesions identified.

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#2

Hi, welcome! I hate that they gave you the MRI results before you see the doctor, because the way they write up the report is ALWAYS more terrifying than reality. (Every time my husband gets one, it says that they see evidence of either prior surgery (which is in his records), or a massive stroke happening while he was in the machine. THAT was terrifying the first time we read it!)

Do your best to set it out of your mind until you see the neurosurgeon. "Small" is good, "no significant mass effect" is good, and "no midline shift" is good. (If I recall correctly, the last terms mean that the AVM isn't crowding your nearby brain matter.)

You can drive yourself mad with research and googling before you have all the facts about your own case; you may need to see the neurosurgeon first, get some information, and then start doing research based on what you learned about your situation.

It wouldn't be a bad idea to go in with a list of questions to ask (I'm sure you can search this site for one or start a new thread), but it is probably too soon to start guessing at how it will all play out.

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#3

Oh my goodness- I can totally, totally relate!! Not only was I first diagnosed when I was 34, but my AVM is in the pons area as well!! Because of where my avm is, the neurosurgeon opted for me to have Gamma Knife radiation (Cleveland Clinic).

I'm 37 years old, and will be getting gamma knife again tomorrow.
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#4

Thanks JH. I appreciate that. I have the patience of a small child right now. haha. I appreciate you going through and reading the results and letting me know. It's comforting. Thank you.

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#5

Thanks Cheser09. If you don't mind me asking, how are you after the surgery?

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#6

I won't lie- it has been emotionally challenging at times. If you are a spiritual person, I would highly recommend praying about the situation. Physically speaking, I've put on some weight, but it has not slowed me down- I just ran a 5k this past Monday.

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#7

Hello Janet! The amazing mods here have just what you want: if you go to the shortcuts across the top, you will see "AVM Info". Click, pull down and ... TA DA! ... there it is. Just what you asked for: AVM101 !

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#8

My husband had a stroke at age 45 and was diagnosed with cavernous malformations as a result. He had been in perfect health up until that time, with no hint of any health issue up to that point. He had gamma knife procedure 6 months post-stroke. His cavernomas are in his pons and brain stem. He had no repercussions from the gamma at all; some of his stroke deficiencies remain to this day (2 years post-bleed). His first post-gamma MRI at the 3 month mark showed slight size reduction of the cavernoma in his pons, but no improvement with the one in the brain stem. He has had 2 other MRIs since then with no reduction of either cavernoma and we had pretty much resigned ourselves to the fact that that was all the improvement he would have. However, last month when he had another MRI, the one in the pons has reduced again, although the one in the brain stem still won’t budge! So unfortunately, the name of the game for us is patience, faith and hope. Best wishes on your journey, please please, never lose hope and as my husband’s neuro told us: “Live your life!”

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#9

Hi Janet it is human to open the report before seeing a doctor etc and do it still to this very day lol… I’m not a doctor but reading your report its obvious they have detected a small AVM and a neuro is the only professional who can tell you 100% what can be done to address it…don’t be worried (I know that’s easier said than done) but your not alone…have you ever suffered from headaches, seizures etc in your lifetime? Reason I ask is most ppl with AVMs suffer these type of things before being diagnosed, however I had nothing until similar to you a headache for a couple of days after the gym…keep us posted and stay positive you are not alone… God bless!

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#10

Every AVM account is different. What yours and mine had in common were the flu like
symptoms with the headaches which seemed to herald my illness. For me it was
the very first clue that something was wrong, but the doctor did not catch it. The next
several months I had those severe headaches from time to time and sleeping seemed to
be the only way to make them go away. In time the AVM made itself known, you might say.
I recommend letting the doctor look at the results of your tests just in case he/she
thinks that you need other tests or treatment. I wish you the best.

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#11

My AVM was found recently also, and I struggled with similar questions before my first appointments. I did tons of research before my first appointment wanting to know "how big of a deal is this really". The truth is (for me anyways) its a big deal, and it isn't. You could live your whole life, and never know it was there and nothing could ever happen, or...it could cause something major and life altering.I went to the Dr. because I thought I had the flu and had been dizzy for a few days. They thought I had a simple case of vertigo. I have suffered from severe migraines for the past 9 years. I am having a craniotomy next month and I'm still struggling with how big of a deal this isn't or isn't. :) Try not to freak yourself out too much from everything I've learned AVM is very treatable, very livable and there are tons of amazing specialists out there who do a great job. Good luck :)

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#12

Thanks! I saw the link after I posted. :)

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#13

I'm sorry to hear about your husband. I actually just met with a doctor and now they are saying that it's more likely that it's a cavernous malformation over having an AVM. But, I have to have an angiogram to be sure. Patience is the name of the game isn't it? I'm pretty impatient so I guess I'm working on it. My neuro kind of had the same advice. I appreciate the reply. You'll have to share the updates when you have them. I'm especially interested since my issue is also in my pons.

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#14

Thank you so much for the reply. Still trying to figure out what I might have. Now they are leaning towards a cavernous malformation. Need an angiogram to be sure. I've had headaches here and there, but I'm not prone to them. Just a typical once in awhile thing. I can only remember a handful of times that they have been bad. One of them being a couple of weeks ago. No seizures or anything. I hope you're doing well now.

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#15

Thank you for the reply. I hope you're doing better. I'm sorry for what you've been through.

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#16

Thanks for the reply. I'm sorry to hear what you're going on. I guess I'm coming to the same conclusion. That it is and isn't a big deal. I hope the very best for your surgery. And you're right, they seem to be very treatable. You'll have to update on your progress.

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