Newly Diagnosed Brain AVM

Symptoms & Treatment
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On October 8, 2020, I went to the ER for a severe headache that started 2 days prior. CT angiogram of my head showed an AVM located in the midline cerebrum, involving bilateral pericallosal arteries. The above headache was my third one in one week. The first two episodes of headaches were not as bad as the third one. I didn’t think much of the headaches initially, and thought they were just associated with my use of birth control pills.

I am 49 years old, perimenopausal, and was started on combination estrogen/progesterone pills for Dysfunctional Uterine Bleeding in May 2020. Based on my recent readings, estrogen is proangiogenic and may stimulate AVM progression. In hindsight, I should have had hysterectomy as opposed to birth control pills for treatment of my uterine bleeding.

I haven’t had severe headaches since my diagnosis, but I have on and off headache 1/10 (on a scale of 10 being the most painful), seemingly positional. I am still able to cook, do light cleaning, walk, shower, etc. I have consciously not done strenous activities.

I also had dizziness on October 13, the urgent care doctor diagnosed me with Benign Paroxysmal Positional Vertigo, and impacted cerumen on right ear. I took one dose of meclizine, had my ear cleaned, and have been hydrating up to 1.5 - 2 liters of water daily, which seems to help in controlling the dizziness.

I have an appointment with a neurosurgeon on October 27. I pray that the neurosurgeon can fix my brain AVM with the best outcome. I would like to be taken off the hormone pills for my uterine bleeding, and at some point, if cleared by neuro, I would like to have my uterus taken out asap.

I have been emotional the first few days of my diagnosis, but try not to cry because that seems to trigger headaches. My husband has been supportive, and has been my great motivator. Our two kids, 11 and 12, know that I have something in my brain but they don’t know the details. My three siblings also are my support (two of them live out of state, one lives 30 minutes from me).

I don’t know what to expect, although I’ve done some readings on AVM. I just hope and pray that this AVM is curable. I hope and pray that I don’t die yet, as my kids are still young, and that I don’t become a handicap.

Is there anyone here that has a similar experience as mine (that is, location of the AVM, symptoms, etc.), and even if not , I would like to hear from you about your “journey”.

Thank you for reading.

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@Maja Hello and welcome so glad you found the site. I am in Ca and go to Stanford for all my brain stuff. My journey started out first due to unrelated CVST rare stroke at 43 and then a few months later my avm developed. I was also getting dizzy and thinking it was my blood thinner but then I was passing out and also hearing a whooshing. After surviving a massive stroke and being in a coma and then being told I had another rare brain thing and I would need need a brain angio and embolisms I totally freaked out inside my head. I am the rock in my family and no one is used to seeing me cry - So I found this site and had my freak out and would cry in the car or whenever everyone would be in bed. Also I find that unless you are going through it family and friends cant really understand and honestly I dont want them to have to go through it . This stuff is super scary and dont be afraid to ask your drs tough questions like How many people have died with you? How many strokes? I worked in trading for most of my work life and I am not afraid to ask anything this is your life and your body. I was esp afraid cause I had already recovered once from being paralyzed and not being able to talk from my cvst stroke. I did have a small stroke after my first embolism but they were in my head for 7.5 hours and that was just way too long for my brain and I was still in recovery. I recovered the next day from not being able to speak and got my ability to swear back that I had lost from the first stroke. So a blessing in a way. My avm is a DAVF and I am sure someone on here will respond that has something similar to yours. This is a great group and very supportive.
My dr is the founder and head of neuro radiology and the way he explained it to me is that it his experience that he knows what to use for the embolism so I decided he cant retire and if he does I dont want a super young dr working on me…just want someone who has done plenty of these -
hugs Angela

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Welcome to The forum; a lot of good information on here and supportive people, best of luck in your journey!

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Thank you Angela for sharing your experiences. How old are you now if you don’t mind my asking, just curious, how long your recovery was from day 1. Aside from embolization, did you have neurosurgery and/or radiosurgery? Are you still going through any treatments, and are the dAVF and CVST gone? I’m glad that you have recovered to the point that you are here now, and well enough to see, think, type, put together paragraphs, and remember what happened. Take care.

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Thank you Mike!

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@Maja I am 52 I had the CVST stroke due the 5 blood clots in March of 2011 then I think it was Nov they found the DAVF and in Jan of 2012 had the first angio and embolism and the smaller stroke. I worked in trading so swearing is important esp as a woman - I am also Italian and I tend to swear but the first stroke I couldnt swear and when I would get upset I would say things like knuckle head or doo doo head like I was 5 years old and everyone was like what is wrong with Angela…The CVST stroke fried my Thalamus and damaged my basal ganglia area which both now show fine but left me with something called centralized pain syndrome so I have constant head pain and left side body pain. In 2015 they went back in to get the remainder of the feeders but some how my body had sealed some on their own ( this is rare ) and the remaining I think 2 they dont want to touch cause it could paralyze me - so we just do an MRA every couple of years or if I am feeling weird. Even though I have pain and have trouble sleeping and cant work anymore in the job I loved. I volunteer when I can and I am thankful that am able to walk talk etc - And all my blood clots are gone thankfully too. They were caused by too much vit k - I was eating "healthy " and taking vit K not knowing its a blood clotter and had stopped drinking which is a thinner. The clots and my brain damage recovery went faster than they thought and we ( my husband and I believe it was due to adding coconut oil to my tea or coffee) I think our brains need fat and protein to heal. I still will have issues with aphasia and tracking time. At first with the CVST stroke my short memory was shot and I could not retain what had just happened to me - I think it took about 3 weeks for me to understand that I had just had a stroke. I never had to have a crainotomy but I have seen Dr Michael Lawtons work who is considered the best in the USA and he was almost my dr -he is now in Arizona at Barrow and he used to be by me in San Francisco at UCSF and is good friends with my ENT. I am allergic to the dye they use during the angiogram so I have to take steriods before and so I dont feel very good for a few weeks after - and your groin is sore from being cut. The angiogram is the only way they really get a true look at whats going on. Mine was much more complex than the MRA showed. You are usually awake for the angiogram so you can see what they see which is kinda weird - mine looked like a spider with 30 legs so I was like what is that? We do have lots of spiders cause I have an organic garden and I am super afraid of spiders so my heart rate went up so they had to do a main line iv - which is where they go through a vein in your neck to your heart and it really hurt so I told them they better knock me out or I was going to hit them. When I am in pain I want to punch people and this was one of the most painful things I had done to me. I think it must be what a heart attack feels like. But the second time I was mentally prepared to see my spider and all went well. I did ask one ER dr who was doing the main line IV to my younger sister if they practice on one another and he said no- I said you should cause they hurt. Now it might of had a medication that I am allergic to cause I am allergic to so many and they recently found out I am allergic to lidocaine - Most people do fine and dont have any issues - my case is extreme because of the massive stroke I had before and my allergies. When you do go in for your angiogram you will most likely spend the night in the hospital and hopefully COVD will be over or enough so you can have someone there with you. And just bring everything with you that you will need to be comfortable like chapstick, crackers, gingerale etc. And get your bedroom ready just incase you need to recover.

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I’m happy for you that you still have good quality of life (ability to see, talk, walk, volunteer, etc.) after all you have gone through. Thank you for all the tips regarding preparing for the hospital and recovery at home. During your recovery, who had to take care of you, and help out in the house? I only have my husband and our two kids, my sister although she lives nearby works and and is busy. Thank you again.

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Maja,

Welcome! I have a dural arteriovenous fistula (“DAVF”) a bit like Angela and mine was treated in 2017 with embolisation (glue!) I also want to say that not everyone has as tough a time of it as Angela. Today, all is well with me, though it took a long time to get back to “normal” and not everyone gets all the way back to 100%; but 95%+ or 97%+ is not a bad place to be.

I think my main shares with you would be…

  1. This sort of thing rocks your world, turns it upside down and a lot of what you’ll go through I hope will be just the emotion and the worry about how life has changed (and will it get better again). This is completely normal and I think most of us have been on that rollercoaster. It’s not nice but with time and understanding, I think it calms down a lot. So the way you feel about it all now is way worse than I think you’ll feel in a few months time. Hang in there, it’s going to be fine.

  2. Describing your uterine bleeding is interesting because some people have multiple AVMs, including in the uterus (and in a condition called HHT, often through the core of their body) so I would just ask the question if your uterine bleeding could also be an AVM and whether screening for HHT is relevant to do.

Not all brain AVMs are operable but hopefully when you get to see your neuro, he or she will give you some options as to open surgery, embolisation or radiotherapy, or a combination of these. Whatever route you find yourself on, we have some folk round here who have trodden the same, rare path before you. You are not alone.

Welcome! It’s lovely to hear from you.

Very best wishes,

Richard

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@Maja My husband actually quit his job at Vanguard where he was running their Fixed Income Dept initially they told him he could work from home but they never sent the laptop ( he had been working out of state in Arizona ) and I was also flying there from the bay area with blood clots in my brain making them worse unknowingly.
So he decided to quit . He later got a job with the SEC.
Then when he needed to be outside of the house either my parents would come to be with me or my sister.

I am a Commissioner on my local aging commission even though I am not a senior- which I have learned that every county by Federal law has aid for people with disabilities and seniors - now some services depend on your total income.
So you may qualify for some inside home aid.
Call your local Aging and Adult Services.

Also each hospital has social workers that are supposed to know what services are available, but what I am finding is so many people are retiring that we are having a huge knowledge gap.
If you do find post treatment that you are having a tough time you might want to set up one of the meal service delivery plans .
I have done so with covd because my husband is high risk cause he has COPD from a bad pneumonia before he was with me and I have such pain on my stroke side after I go grocery shopping.
We have been using Hello Fresh and we just got our third delivery and really like it.
It’s nice - I don’t have to go to the store, and we get to try something new-
And if you have pain in your head a lot after ask to be referred to a headache pain neurologist.
My pain neurologist explained ( she is head of th headache pain clinic at Stanford) that the longer our brain feels pain then it thinks it’s normal then that’s how we will feel for the rest our lives.
So then I started Botox shots, occipital shots, and we do ketamine infusions and oral Ketamine for really bad days.
Angela

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Thank you for all the information and experiences you’re sharing, they are very helpful. I hope you get better each day. * Hugs*

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Thank you for the encouragement, Richard. I can’t wait for all these challenges to finish, and come out a winner. To me, the news is still surreal, it’s hard to believe this is really happening to me. I have my first appointment with the neurosurgeon on Oct 27, I hope he tells me, mine is fixable. I have had a few diagnostic tests for my uterus (ultrasound, hysteroscopy, biopsy, etc.) and none of them mentioned AVM, my bleeding was attributed to perimenopause but I will bring up HHT with my doctors.

I’m glad you’re a lot better. Take care.

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It takes time to get more comfortable with this. You’re at very early stages so I know how you feel because I freaked out for at least three months!

Some people here would say it took me a lot longer than that! They might be right :rofl:

You’ll get there.

Sending you all my very best wishes,

Richard

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Welcome Maja, I imagine you are looking forward to the 27th! The not knowing is always very difficult for sure. I was 48 when I had a bleed and fond out that I had an AVM. My kids were 11 and 12 at the time, that was in 2016. I ended u having gamma knife as it presented less risk due to location of mine. Take Care and please let us know how your appointment goes, John.

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@Maja for your appointment be sure to write your list of questions down and have someone go with you who is a good note taker . Cause when it’s you it’ tends to blank out .
When my husband and I go we decide what he is going to bring up and what I am going to bring up .

Please let us know how it goes.
Hugs
Angela

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Hello,

I will undergo for a surgery on Nov.18th and i am single mom of a 4 year old girl.At first i am afraid because this is the first time i have issues on head/brain which is the AVM i don’t know know what will happened after the surgery.i really don’t know know as i don’t have family here only me and my daughter. But i am always praying that everything will be fine as my daughter is still young.i always pray that God will guide more the doctor’s and surgeon who will be with on the day of the surgery. We just need to be more positive in life.

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@Bebs

It IS frightening, we all agree with that but just about all of us have gone through one or more operations in the same way as you (not everyone is able to have an operation) and got out the other side. I’m also sure we have a decent contingent of folks who’ve been treated at VGH, so some of the @Canadians will be able to cheer you on there!

Do you know what your treatment plan is yet? i.e. whether it is expected to be a craniotomy (open surgery) an embolisation (using a very fine catheter) or radiotherapy? Again, there are people here who have got through the same.

Lots of love,

Richard

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Hi Richad, thank you o much…it was an open surgery…

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Well, I can’t share any experience of my own with you but there are plenty here who have had a craniotomy.

Has the doctor described the risks to you yet? There are obviously risks associated with any procedure like this but if your AVM is very large or deep or very near to some of the core functions, the doctors will not operate as it is just too dangerous; further away from those things it becomes operable but with significant risks and smaller or further away still it is lower risk.

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Hi Bebs and welcome. I’m a Canadian as well, but a long way from Yukon. I live near Winnipeg. We have some folks on here who were treated by Dr. Haw, so hopefully they pick up on the post. This whole business is scary, even more early on, the unknown was terrifying for me. Is you upcoming appointment for surgery? They are darn good in Vancouver from what I hear. Take Care, John.

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Hi JD12, I went to see the neurosurgeon today. It wasn’t a very informative or “productive” meeting as they couldn’t open my CT angiogram imaging on CD, so the doctor wasn’t able to come up with anything specific diagnosis or treatment plan for me. He ordered a brain MRI, he said it should be better in capturing bleed if any. Where was your AVM located, and how are you now? Thank you!

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