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AVM Survivors Network

AVM at 42 years old


#1

The doctors discovered my AVM after an incident at my house one evening. It was on July 28, 2018. I was in the pool with my children and husband. I didn’t feel any different from normal, all of a sudden, my husband noticed I was chewing the inside of my cheek and starring off into space and also rubbing my fingers together. He panicked and called 911 due to not responding to any of them. He got me out of the pool (PTL) and I vomited everywhere. I was life flighted to the closest trauma center (50) miles from my home. After tests were ran it was decided that I had an AVM that bled that day. After being able to communicate with the doctors, he said I was born with this monster (as I call it). I have seen neurologist and neurosurgeon and now I am to see a Radiologist/Oncologist this Friday. Does anyone know the success rate of radiation? The surgeon would not do surgery, due to it being imbedded in my brain too deep. Also, has anyone experienced depression during your treatment or just finding out that you have this? That is all I can think about.


#2

Hi

Welcome to our community!

I didn’t have a bleed but when I got my diagnosis, I was just as worried about what it all meant and the options for treatment. It is all-consuming. It’s absolutely normal. I know I went into quite a dip when I had my diagnosis.

Welcome!

I don’t know what the relative merits of the different types of treatment are in terms of success. So far as I know, each have similar capability to get you fixed. The difference is that each has different impact on you, so some treatments are suitable for AVMs near the surface of the brain and other treatments are suitable for deeper parts of the brain. So if your doctor is recommending radiosurgery, that’s because it is the best option / least counter-affective option for where your AVM is.

The thing to know about radiosurgery is that it is a very uninvasive treatment. I think you’ll be in hospital and out either same day or next day in most circumstances. However, the effect of the radiosurgery takes a long time to happen. I think somewhere between 2-3 years to have its full effect. Maybe rarely shorter. Sometimes longer.

Sometimes it is necessary to have a second go at radiosurgery. Maybe more. In this respect, it is perhaps not always fully effective but it may still be absolutely the best option for you. Does that make sense?

It’s great you found us. And do ask any questions you need. We’ve got people here who’ve been through this stuff, so they know. My treatment was using glue – literally – instead of radiation, so I’m a bit less familiar with the radiation option.

Take it easy. It’s going to be just fine.

Very best wishes

Richard


#3

Oh dear! Youmust be scared as can be! I know I was! I’ve had depression for many years and was told by my team of doctors that it was due to my AVM but when I got diagnosed I felt at peace with it mainly because I finally had a name to the symptoms that no one could give me a reason for or relate to! I also call it a monster by the way:) and it was surreal to me that I had it my whole life. So that gave me peace too. That it decided to rupture for a reason (twice) despite the damage done it saved my life and made me revaluate life. It brought old friends back into my life and made me realize who and who wasn’t important in my life as well as what priorities are. My goals in life changed as well as the things I used to worry about back then seem silly now and Im only 25. My son comes first as well as my husband and I. So my avm despite being a monster it was also a hidden blessing. If it wanted to end me, it would’ve done so years ago. And I survived and beat this thing because it wasn’t going to end me. I’m 1 year in recovery by the way :slight_smile: I had both a craniotomy and embolization although I was told if it were to ever grow back I have the choice of embolization again or gamma knife. Mine was a parietal grade 5 avm with 4 aneurysms. I had my rough dark days but with my history with depression, I wouldn’t really say I was depressed. But I did wonder why I was even alive if I had a thing that could kill me any second. Like I got to the point of seeing no reason to be alive aside from my son and husband. As dark as that thought was, in my eyes it still wasn’t as dark as my thoughts when I would struggle with depression. There’s a light at the end of the tunnel! It’s hard ti believe at first, but recovery is possible! Chin up! You’re stronger than you think and are bigger than that monster, just take it day by day. Acceptance takes time. I didn’t accept my fate for months but this nightmare too shall end! This is a wonderful community! I come ask questions on my hard days and come give a hand on my good days :heart:


#4

Hi Tawana,

This ‘monster’ as you call it has hit so many of us in so many ways… I suffered a bleed prior to knowing i had an AVM at the age of 30 and had to have it removed by surgery, which i really had no choice in due to the circumstances… I know there are many who have gone through radiation with full removal and successful recovery so rest assure someone here will shed some light on your post.

It is hard and yes we can get down in life but please understand that this is something you can address and with the right docotrs you can beat this monster and live a normal life, as there are many who still have active AVM’s and live life normal to the fullest… stay positive and keep us posted on your journey… God bless!


#5

Mine announced it’s arrival when I was about 9yrs old.Or so. Thought it was just an ordinary nose bleed but in a short while there was blood all over the bathroom sink! Looked like Stephen King was doing one of his movies there. My sister cleaned it up and almost fainted.Thing is, there wasn’t a name for it til much later. Just thought I’d share. O I forget my manners, Welcome :smile:


#6

Hi Tawana, my apologies on not messaging sooner. I was 48 when I discovered what an AVM was and that I had one that had bleed. I spent several days in the hospital and sent home to recover. There was a tough couple days in there which I have little recollection of, but the discussion was of the need to do immediate surgery, ruled against as it had clotted, then the need to put a drain in, hydrocephalus etc. At the end of the day steroids and rest was successful. Then came decision time, crainiotomy or gamma knife. I had gamma knife 6 months after my bleed, that is now two years ago. The success of gamma knife and other variations, such as cyber knife, is quite variable depending on a number of factors. I would estimate that size is the primary indicator of success rate, mine was small so gamma held a higher chance of working. Location is an influence as well as it influences the amount of radiation that can be applied. Mine was in a void created by the bleed so they were able to be “liberal” with the dose. Dr. Googles does provide a lot of info but the usual cautions apply that the negative often out weighs the positive. There is of course risks to all.

I hope your appointment tomorrow goes well, and if radiation is your chosen route feel free to ask anything you wish. There are a lot of folks here you have experienced gamma knife, some with great results and some with not so great results. Take Care, John.


#7

Hi Tawana. Welcome to the group. I hope all went well with your appointment on friday. It is scary but you realise that you are given a second chance and to start living again.The doctor that treated me said it can take up to 3 years for it to clear and it also reduces the risk of it bleeding. I wa diagnosed in May 2018 and had a one shot radiation 30 July. I asked for something to calm me down before I went in (believe me it helps especially if you dont know what to expect) and of the 45 min they were busy with me the whole radiation took 5 min.Was a bit nauseas afterwards but gave me heavy dose of cortisone. Slept alot and had my scalp wa sensitive for a week or two but now I am doing good. You get tired easily and I lost a bit of weight but other than that I function normal in my worklife and personal life. Ask if they can recommend someone you can go see after your treatment to talk to.It helps as even your fAmily dont always understand that you are walking round with a ticking time bom. It may sound silly but enjoy everyday that has been given to you and try something new every now and again. I have not felt so alive and learned alot about how strong I can be and you can too. Stay strong and if it wasnt for this group I would have gone crazy :heart::heart::heart::heart:


#8

Tawana, I would be more concern about you if you were NOT depressed to some degree. You’ve experienced a life-altering event and it’s not over yet. Depression is a normal reaction to something that has changed you in a less-than-positive way.

The trick is, you need to just keep on keeping on, work through, ask plenty of questions, and adjust to the life you have now.

azurelle


#9

I had radiation almost 4 years ago. My last annual check up last January showed that the AVM Completely disappeared. Do not be afraid everything will be fine


#10

thank you so much for the words of encouragement. I feel like I’m going crazy at times. it’s all I think about, like when is it going to happen again and will I be so lucky the next time. Thanks again and I hope your outcome is good as well.


#11

Hi there. It must have been an awful shock for you to experience this so suddenly. I am 45 but have known I had an AVM since my mid-20s. And it caused some problems even before that. Despite this it is unruptured and stable so I was advised not to treat. Although its awful to know you have this thing my life is not very impacted by it and I don’t want to make things worse for myself. However my AVM is also buried deep and not suitable for surgery so maybe I understand how you feel a little - although its slightly different if you have had a bleed. I’m afraid I don’t know what percentage of radiation treatments are successful. But I do know (mainly from reading this site) that not all are and that in some people it can cause further deficits. My advice would be to seek professional medical consultation and try to go with the advice they give you. Best of luck.


#12

Hi JD12! Have you done your cerebral angiography yet? I m going to do mine in December (2 years of Gammaknife) I m so so anxious!


#13

I haven’t had one since prior to Gamma Knife, I had an MRI on Monday and hope angio is next. When in December, and we’ll all be thinking of you! John.


#14

@Tawana.mcghee Hello and welcome to the site. I am glad you found it. You can send you scans to the Barrow instit. in Arizona for a second opinion- I believe they will review for 150- Dr Lawton is considered the best in the USA.
He just told another person who has 3 DAVF in their frontal lobe their is a 15% chance of bleed a year and that it does take 2-3 years to see if there is any shrinkage from the radiation.
I dont know the stats on the success rates but I am sure Dr Lawton can tell you.
I am sure it also depends on the location of your avm,
I had mine at 43 and so far have been controlled with embolisms.

Angela


#15

Thank you Angela. I was told my AVM is deep in the brain. Embolism isn’t an option because the feeders are too small to get glue in them. Thanks again for the information.


#16

@Tawana.mcghee did they say anything about gamma knife ?


#17

They did but they also said mine was too deep to try anything else. It would mess me up.