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AVM Survivors Network

One seizure, now a Avm

Hello, My first appointment to the Neurosurgeon this week. I don’t know whats going to happen, but Im not scare. I had my first and only seizure 11/16/2019. I made a doctor appointment and then had to take 2 difference CT scan, didn’t get a MRI yet because of my insurance and now after that. The CT scan showed a moderate size (AVM) arteriovenous malformation, In the Right parietal area of my brain. No evidence of bleeding, a stroke, mass or cancer. So I google now about it like crazy, No one around me taking it serious. And Im not scare or nervous about it. I just really don’t know how to FEEL about this AVM. Now I have to go see a neurosurgeon, and I just don’t know what to Expect or Feel. About this AVM

Hey, @Blackcotton

It’s good that you found us! I think discovery of anything like this is a bit shocking, a bit numbing and as you get told things about it by your neurosurgeon, you’ll probably go through every emotion imaginable. It’s called the “change curve” (another thing to Google, maybe). So, you’re in great company because I think we’ve all been through that change curve, one way or another.

There are four main ways of dealing with an AVM, so your doctor will hopefully explain some of these to you (you might ask him or her about all four):

  1. Leave it alone. If it’s in a really difficult, dangerous place to go doing stuff, sometimes the best thing to do, or the only thing to do, is to leave it alone; or sometimes watch-and-wait.
  2. Zap it with radiation: “stereotactic radiation” it is called, or “gamma knife” radiotherapy; or occasionally “proton beam therapy” is advised. The first two mean the same thing; proton beam therapy is conceptually the same (but zaps it with protons).
  3. Embolisation. Literally, glueing it up, by inserting a very fine tube through your arteries from somewhere like your leg or your wrist, navigating the route to the AVM and injecting glue, coils or other blocking material to clog the whole thing up. I had an embo.
  4. Open surgery. A “craniotomy”. This has to be the most invasive and scary method (but seems to be very successful). Remove a section of skull and do what we all think of as brain surgery.

Sometimes doctors combine treatments to get the best effect. What you want is a doctor who is taking a balanced view of the options for whatever place your AVM is and giving you sound advice on which option(s) are best. All of them carry risk of one kind or another but they should talk you through that, too.

If your doctor doesn’t give you a balanced decision, it may be a good thing to get a second opinion. Sometimes a neurosurgeon will focus only on surgery and you may need the views of an interventional radiologist regarding the embolisation or radiotherapy path or vice versa. You should also get a view from your doctor as to how urgently (if at all urgent) you should act. While we think of these things as big and scary, it doesn’t necessarily mean they are big and scary and urgent, so finding out how the doc feels about you having other opinions and the urgency to act is also good.

You’re among friends. I’d say we’ve got people here who’ve been through exactly what you’re facing, wherever it is, and we are here to help, support, etc.

Welcome! Its great to meet you!

Richard

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Thank you so much, For educating me, about my feelings(I Google) It was good to let myself, Know that my feelings, is (okay) and the process ahead of me. You made me realize one thing… to stay positive. I will be back, to update. Oh Thank you again.

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This is just an unusual turn in the road. Looks a bit dark and threatening but there’s every reason to believe the sun comes out again later.

Whatever you need, that’s what we’re here for. We’ve been through the same dark alley. I felt exactly the same.

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I seen the neurosurgeon,

“If you take a look at my face you see my smile is out of place. You can track the tears down my face”

I could had this AVM and not never knew it. I was told about people sometime live their lifetimes without having any symptoms, ( so the seizure was an uninvited blessing) Because the blood vessels could of broke open and bleed…whether I knew it was there or not. I learn that I can not ignored this.

Because there is no way of me telling whether it will bleed at some point in my life. The brain is probably the worst place for me to have this. (Mentally) Im not ready.

The doctor was great and giving me a clear view about whats ahead of me and my options. He started me with a seizure med. ( Keppra) And more test to come. I have to stop smoking so thats my day. But I got hope also that…I am capable of living a normal life after this is over. With God all things are Possible. 19:26 Matthew

Hi,

It’s a big strike to the route you thought life was taking.

In October 2015, I went to the doctor because I had something else going on but I could also hear a faint pulse at night. By January, the pluse seemed louder and I did a bit of Googling but couldn’t find anything worth worrying about. However by March or April, it definitely sounded louder. I did a bit more googling and found an article about AVMs! Darn! I thought, so I went to my doctor. I had to wait 4 months for a referral to hospital but when I got my confirming initial diagnosis in hospital, it properly knocked me. All of a sudden, just like you, life had changed. I’d never worried about my health before but all of a sudden, I had a risk of a bleed in my brain and I had no idea how big a risk that was or how big an area of my brain was perhaps affected by this thing.

However, time helps to get your mind around this kind of thing. Everyone here welcomed me in and encouraged me that this is not somehow the end of things. There is risk here that we didn’t know was there but it is a risk that has been there for probably some time. Most AVMs are believed to be congenital – you’ve always had it probably – but the news does take the wind out of your sails.

Don’t panic. The seizure is an uninvited blessing. Now, you know this thing is there and a proper assessment of it can be done. Cutting out smoking is a really good thing. The nicotine spikes your blood pressure and getting rid of those spikes will reduce the risk of your AVM springing a leak. I cut out coffee and chocolate and my head felt noticeably better. I have to say I believe my AVM was developing quite quickly, so the effect of cutting out these things helped me for about a month but it was the following April before I got as far as having any treatment, so even then there was not a great rush to get me sorted.

Stay calm. Take your time. Being calm is impossible but just let yourself work through this. You’ll get to a better place if you give yourself time. We live at the best time ever to have one of these things: the outcomes from this can be good and the likelihood of success is better than it has ever been before.

Sending you all my love,

Richard

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m be calm and stay calm, And take my time with these options and information, Im trying to understand. I am learning about being calm, might be impossible but just letting myself work through this. Im get to a better place giving myself time and loving this communication, real knowledge, and understanding of all this about this thing in head.

I don’t know if I do live at the best time to have one of these things: I went thru an abusive relationship -postpartum depression - depression- anxiety disorder!

But I work thru all that. ( Reading, Praying, Meditation, Vitamins, working out, pretending into I made it) I Got my confidence back, my boys is older now and figuring out life on their own. Im 40, and think Im something special and then, this.

I do pray my outcomes from this will be good and Of so much positive result and victory!

I go get a function MIR next month(Jan) and then another regular MIR after that and then talk to the doctor.

This page(website) -thread has becoming my Diary of my AVM- that has helped. Thank you for this.

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Hey Blackcotton,

I had a seizure in May 2018 and an AVM was discovered in my left frontal lobe. A CT scan was done while I was not composed mentis and once I came back to consciousness an MRI was recommended as well as epilepsy (anti-seizure) medication. I was stunned and scared at first, but rallied and did a lot of research, including reading academic journals, so that I felt I was fully informed to make decisions.

When it came to the MRI, I decided not to have the dye (gadolinium) because of the lack of knowledge about how long it stays in the brain. There has been a class action (legal action) about this in the USA as many people have had ongoing issues as a result of gadolinium.

I declined an angiogram - the risk of stroke worried me more than the risk of the AVM rupturing.

I declined to go on the first epilepsy medication - the research I did suggested it was quite an old medication and had some nasty side effects. I also declined to go on the second one they prescribed - a newer drug but nasty possible side effects.

I declined surgery. Left frontal lobe - ummm, no.

I am in my fifties, and was advised that the chance of the AVM rupturing increases each year. Of course, I realise that is a possibility, but I thought that the chances of being in a car accident increase each year I drive too, so I tried not to let that scare me. I decided to live my life as if it wasn’t there - for the most part at least, I no longer scuba dive.

I have come to a point of being able to accept this is the way I may die, and the real point for me has been facing my own mortality. I am now at peace with that, after a real struggle with my own fears. I researched a lot of people’s near death experiences, and I was reassured by this and I now look forward to the afterlife. Even if it is non-existent (which I do not believe to be the case), I choose to believe something which brings me comfort.

My seizure was 18 months ago, I have not had another, I am not on medication nor have I had surgery. I practice mindful intention and watch my thoughts, not allowing myself to let any negative thought to escape out to the universe without being countered by positive energy.I have become a firm believer in the power of our thoughts to affect our health and wellbeing. It has sustained me over what has probably been one of the hardest times in my life - not just the AVM but other things have occurred that have been difficult.

So I hope the above helps in some way to provide some hope.

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Good evening. I’m sorry to hear about your anxiety and uncertainty regarding your AVM. Those days before meeting with a neurosurgeon are always filled with “what ifs”… and a lot of stress. The unknown is a very scary time, and many things can go through our minds.

Have faith in your neurosurgeon and the strength that you have within yourself. I had AVM surgery almost 2 years ago. This surgery was combined with the same surgery I had for an enraptured brain aneurysm. Although a long surgery, my future is now bright. I’m sure yours will be also. Once you know what the specific plan your surgeon recommends, you can then have a little time to process it all. Please feel free to reach out again and update us on your progress. We are here or you. Lots of prayers and best wishes to you and your family during this uncertain time. Better days will definitely be ahead. Know that you are not alone…

Carol

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I had the same thing happen to me. Seizure then all the scans put on medication and many appointments with the neurosurgeon feeling scared and uneducated and loosing much sleep. 3 years later and 3 embolizations later with an aneurysm it kind of becomes a part of you. My normal has changed a bit but I am still alive and thankful for that. This sight has helped alot. Good luck :blush:

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On my way to church, to give Thanks,
And to pray to my Dear Lord,
that I realize that, I might go through a lot, but for HIM to please give me patiences to wait on HIS perfect timing, because I know sometimes blessings are birthed through pain. This year a lot of things had broke my heart but for HIM to fixed my vision. And I’m ready for what HE have planned for me.
So I am, going to educating myself and put faith in my doctors, and enjoy every day with a smile. Because I pray this medicine don’t change me. But make me better.
I Thank everyone for the replies, because It has helped me look up more on google and read, and Im keeping notes all about the different things with AVM and the options I do have. I don’t feel powerless with this…yet.
So I Thank everyone.
This has helped me have more questions for my doctor. But also has calm my nerves.
I pray everyone have a Blessed and uplifting DAY &WEEK!

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Greetings, Blackcotton!

Richard has given you sound advice. The seizure was a blessing, alerting you to the presence of the AVM. It is often the first sign of an AVM in that part of the brain. I am glad that YOU are taking it seriously, even if others are not. They most probably do not know what an AVM is, and therefore do not pursue a conversation. Many people think they need to give you advice, too. They feel helpless.

You are seeing a neurosurgeon. Good! As Richard advises, consider all the options available in YOUR case. Keep a paper tablet handy and jot down any question that occurs to ask of the neurosurgeon. No question is too insignificant if the response will help allay your anxiety.

Congratulations on locating this site. It is a source of great information and support. We are here for you.

Lifeisgood :pray:

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Hi Blackcotton:

Welcome to the AVM-er’s club! You are so lucky that you found us. We will share information and encourage you along your AVM journey. This trip is a different adventure for each one of us. I think most of us had/has fear about how this AVM will affect us both long term and short term. You wonder if you will ever be “normal” again. Well, my AVM is in in my cerebellum and it ruptured 5-years ago. I have been tested, re-tested, scanned, and I have received gamma knife radiation twice. Now I have a “new normal” and it’s one I can definitely live with. It will take you some time to completely get your head around what is happening to you. Take your time and ask as many questions as you need to. We’re here for you. I wish you all the best. My prescription for dealing with this rare disease is P&P (Prayer & Patience). I know for a fact it works. Again, welcome to the group.

Sharon D…

Welcome to the family… as you see you are not alone and I believe the positive outlook and faith in God are what will get you through this time in your life.

Please continue to keep us posted here and know we are in this together… when I first discovered my AVM I didn’t know how to take it either but after a month had a bleed and had no option but for surgery… be mindful of the fact it is there as you wouldn’t want to increase your chance of a bleed etc… God bless!

Blackcotton,

I had the same symptoms in 2013. In January 2013, I had a seizure and was taken to the hospital. They did a CT and noticed something in my brain. 2 weeks later I had an MRI which confirmed I have an AVM in my right parietal lobe. From there I had a angiogram and then a functional MRI.

Throughout these tests I was meeting with the neurosurgeon, at the end he suggested Gamma Knife so I went ahead and scheduled the treatment.

The week before the treatment the wife suggested getting a second opinion with a different neurosurgeon and sure enough he suggested resection(crainiotomy).

After all that and researching all the top neurosurgeon’s in the US, which many of them are mentioned here on the AVM site.

I went ahead and sent my films to Dr. Spetzler at the Barrow Nuerological Institute in Phoenix Arizona. Once they received the films, they will give you there opinion within 48 hours. I was contacted by them with Dr. Spetzler opinion and treatment option. He suggested embolization followed by a crainiotomy to resect it completely. He said the success rate was above 90%.

I went ahead with Dr. Spetzler recommendation in April of 2013. The surgery was a success and the AVM was removed.

With all that said, please get multiple opinions before making a decision on your best treatment option. If I would have went with the first one i would have had to wait 3 years to see if it worked, instead it was gone in three months.

Hope this helps, please remember everyone’s situation is different.

Carlos