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AVM Survivors Network

Hi, I'm Michael

#1

Well, it’s been quite a journey getting to the point of learning that an AVM is the culprit behind the symptoms I’ve been experiencing for a number of years. I learned this on 4/18/2019.

I’ve not experienced all the symptoms on the AVM list, but everything that’s been happening to me is on that list. I think why it took so long to discover is due to none of the symptoms occurring in tandem. The most prevalent one is loss of consciousness which has happened about every 20-26 months for the last 10 years. I never went to a doctor for any of the symptoms; it just didn’t register that something was wrong.

A CTA is scheduled for May 6th, which from what I understand is to determine the extent of the AVM, so I’ve yet to know how severe it might be. I do hope that at 61 years of age it can be treated - I wouldn’t want to be told “go home, there’s nothing we can do”.

I’ve read through a number of posts in the forums and, honestly, some of the stuff I read about is scary. At moments I think maybe just let me be and I will pass when it’s time. But my wife wouldn’t want it to be that way, nor would the rest of my family.

I am giving more serious thought to retiring at 62, which is only four months away. But then I wouldn’t have the insurance provided by my job and we’d have to get the government kind which to me is crap (in the U.S.). In a way I’d like my primary doctor to give me a disabled status so I could justify retiring plus get a higher dollar amount from SS.

That’s my (short) story so far.

#2

Hi Micheal, Welcome! Finding out you have an AVM is a scary diagnosis, but you are not alone. We are all here with you to support you in this difficult time. The first time I read about an angiogram, I almost vomited and now I have had two done.
Is your AVM in your brain? If so the general location, depth, size, how many entry points, how many drainage points and where it drains into will have a bearing on what type of treatment you may be offered. We are all unique but have many similar experiences. The CTA should answer a lot of these questions for you. It’s great that you are getting it done so quickly. All the best

#3

Hi aliveandkicking, thank you for your reply.

Yes, the AVM is in my brain. I didn’t know what an AVM was when the doctor’s assistant told me over the phone that it was the diagnosis made from the MRA. I looked it up online and, wow, what a drop in countenance I had. The rest of my work day was shot to hell.

The past few months have been test after test after test, trying to find out why I lost consciousness (second time in 10 weeks), and the first time any effort was being made to diagnose. If nothing had been found with the MRA I was ready to say “leave me alone, I just want my license back so I can drive to work!”. However, I wasn’t anticipating if something was found it would have been so serious.

I am both anxious and scared to find out what is learned from the CTA. In any case I will post here what the course of treatment will be.

#4

Hi Michael! Welcome to the group!

Can I say I think all of us who arrive here not having had a significant bleed by way of our AVM announcing itself arrive in the same mode of shock. If your day was shot, I definitely lost a month. Minimum. Definitely.

I don’t think your age will be a problem, so put that out of your mind. I’ve not read of people being told their age prevents treatment.

There are three main modes of treatment. The scary one for me is craniotomy. Very successful and seemingly “popular” in the States but for me low on the list unless completely necessary. Second on the list is embolisation, which means threading a fine tube all the way up to the affected place and injecting glue or coils or whatever to block off the naughty connections. I had a glue embolisation and I consider it just fine. If I needed a second shot, I’d be fine with that, honestly. Third main option is radiotherapy – zapping it from the outside. Very uninvasive but can have collateral damage. TBH any option can realise some collateral damage.

Not all treatments are suitable for all AVMs, so you need to find out about yours and what options the doc says are appropriate.

Have a read around. Don’t panic. Ask anything you want: we’ve all been frightened just as much as you. And let us know how you get on.

Welcome!

Richard

#5

Welcome to the group Michael! I got introduced to the world of AVMs at 48 years old with a bleed, no idea I had one or what one was. I had a bit of a swagger and felt a little bullet proof prior to that and now know the difference! I was treated with gamma knife in November 2016 and am now AVM free. That was 6 months after the bleed and I was down to craniotomy or gamma. Based on my neurosurgeons recommendation went gamma. Lots of experience here on all the options based on the specifics of the AVM, the best course is quite variable. Take Care, John.

#6

@DickD
Thank you for your reply. Yes, I can say it’s been longer than a day for the shock. I’m thinking about it every day since finding out. I wonder most about what the “collateral damage” might be after treatment.

Gosh, the embolisation sounds scarier to me than the craniotomy. Yikes, what a visual I can create for myself!

I will do my best to keep the panic at bay; it’s enough that my wife and family are dealing with this in their own thoughts without me too intensifying their processing of it.

I’m thankful this community is here. I never imagined I’d be one of the people on a site like this. But then neither did anyone else here.

#7

@JD12
I can’t say I’ve ever had swagger :smile: but I definitely have had very few days of missing work due to sickness except now in the latter years. Double hernia surgery, blood clot in one leg, a pulmonary embolism. My gosh, I am falling apart! :unamused:

Of the three treatment options, Gamma Knife sounds the “nicest” to me. I would hope for that.

Do you have any lingering symptoms?

#8

Well, that just shows how different people can be, doesn’t it? Embolisation was my “favourite” option and the only option I was offered, so I was lucky in that regard. I believe all of the options are the best for different circumstances and each are very successful. It is more of a risk as to complications from any treatment, depending for the most part on where your AVM is. It is equally possible that the advice may be not to treat it at all, if it is in a very difficult / high risk location. We have a number of people here who have had the advice to leave it alone, or have decided that way based on the risk of bleed versus the risks from operating.

Anyway, don’t worry about that. Just need to be patient for the scan results at this point.

Very best wishes

Richard

#9

I don’t think I have any due to gamma, some minor due to bleed but aways seeing small improvements. The hardest part with gamma knife is the waiting, it took over two years for me and that was quite fast. It is a good option for sure, mine was quite deep so far less chance of side effects. John

#10

Hi Michael, welcome! You are definitely not alone. I was diagnosed with a left occipital AVM (3cm) in May 2017, I was just a month short of my 29th birthday. However I first experienced a seizure the day before my 28th birthday. I had a seizure during boarding on a plane to Grenada. I had an awful aura before that but I put it down to an awful migraine aura. It was only when I was diagnosed formally and told that I needed to have treatment that’s when my life came crashing down. I thought I could just leave it be,
I was so devastated. I thought I was going to die (very dramatic, I know!) I spent time getting a second opinion from another consultant and reading up about the different treatment options. I would highly recommend doing this and finding out which option is best. Don’t just make a quick decision. I spent months reading up and asking appropriate questions and weighing up the pros and cons. Gamma knife was the better option for me due to the location of the AVM, it was not operable.

I’ve had two cerebral angiograms and had gamma knife last year July. Things get better in time once you get over the initial shock and once you start to gather more information. I’m still healing and going through the emotions and side effects every-day but I feel overall I’m in a better place compared to two years ago. I hope this is helpful. We are here to help. All the best.

#11

@Chan
Thank you for your input. I definitely have been reading and researching on AVM and treatment options. I am probably giving too much thought to what might be since I haven’t yet even had the CTA test. We’ve all probably done that after learning about our AVM.

Thank you community.

#12

If l had not had a wreck and they did a cat scan on my brain, l would not have found out!! Mine was the fast growing kind. In a few months it had grown 3 %. The doc said if l didnt get it fixed, it wouid be lights out for me. My figuring was the sooner the better. It makes it easier when you know you HAVE to get it done. Keep us all informed.
Sharon

#13

Hi I’m Raymond from Indonesia. Before diagnosed with AVM at the age of 29, I was very active in sport. However, it all changed when I had my first seizure but no rupture, then I had a second seizure 3 months after when I washed my car while squatting. Doctor said it was inoperable, even with gamma knife, because of the dimension (3.1 x 3.2 x 3.5cm) and the location as well as the eloquence, in short the score was 5. So far, I only rely on medication (Phenytoin) to prevent the seizure.

Everyday, I’m still working and driving, as well as doing light jogging, yoga, and swimming in alternate days. Does anyone have a suggestion for me? Thank you all