First of all I want to let you know that reading your stories here has already helped me a lot with information and recognition. Thank you so much for that!!
Here is my story and some questions. On an MRI and a later MRA requested by the neurologist after new headaches (and one time aura), this avm (3 cm) was found in te right temporal side of my brain (in may this year). Although I tried to approach the news rationally, off course I got scared and confused. Last week I had an appt with a vascular neurologist, who gave me the option of " wait and see", or go for an angiogram to find out if and if so which treatment options would be suitable. What a decision to be made. After reading and thinking and talking to people I decided to go for the angiogram because I need to know how severe (or not) this is.
I was wondering if any of you got the explicit option of waiting/not doing anything (also before doing an angiogram) and what did you do. Any one of you who decided to not go through with examination and/or treatment?
Another question is anybody out here with a relatively small right temporal avm? I am curious what treatment did you get? Did you suffer side effects?
Also, and I have been reading quite some similar stories here, I would like to tell that I also had symptoms that, looking back, may be related to having this avm. Such as extreme tiredness since childhood (always needing a lot of sleep), having seizures (that always have been labeled as fainting) and a proneness to depression (suffered severe depression between age 20-25). I have always been an very active person who loves running and hiking in mountains. But I also always experienced longer periods in which I found myself almost feared of movement. Now I think these periods might have been like natural, instinctive ways of my body to taking needed rest.
I want to wish everybody here reading all the good luck in the world.
Many greetings (from the Netherlands)
Welcome! Its great to have you join us, albeit under the same dubious circumstances as we all arrive. I think its great to find out what could be done to fix your AVM and the risks of living with it versus the risks of getting rid of it – there will be risks to both.
Obviously, if the risks of getting rid of it are greater than keeping it, the doctors will probably make that clear; otherwise if the risk of keeping it is greater than having an operation, you have a choice as to what you might do.
Some people do choose to live with the AVM. I think the people I know about who have stayed away from an op are where the risk associated with the op is quite high or have been told that the AVM is inoperable (i.e. likely to be catastrophic to operate). @Lulu1 is in the former position, I think.
All the luck in the world to you, too!
Thank you for your kind reply Richard. To be able to weigh those risks is the reason why i choose to go for an angiogram, although it sometimes feels like Russian roulette or something like that. Because from what I read is an angiogram like the golden standard in diagnosing the AVM, but there are risks to it too. I was surprised to get the very open question wether I want to do this or not and wondering whether people choose not to do an angiogram and what their reasons are (besides if it is too risky to do an angiogram?).
I’m not sure my doc ever explained the risks of an angiogram but I think they would include
- you might have issues with the puncture site, e.g. I think there is a risk of damaging your femoral artery or getting an aneurysm associated with that.
- there’s definitely a risk associated with the catheter… it might damage (tear) the vessels in your head.
- there is also a risk that you have a reaction to the contrast material. We do have members here who do react to iodine.
But it is absolutely the best way to see what is what and to be able to properly assess the AVM.
My name is Bea, I am also from Europe, (Transylvania, Romania). My AVM was found last year, I had a small 3 cm AVM as well in my left frontal lobe. I was also a very active person as you said, I enjoyed doing sport, weight training etc. and I had not experienced any symptom until last year, when I started to hear a pulsatile sound in my left ear, it was getting worse, it was very annoying and I could not sleep because of this I did an MRI scan and that is how my AVM was discovered. Only you can decide whether to treat it or not, but it is a very dangerous thing, it has a high risk of a stroke and this risk will increase by the time is passing, those arteries implicated in this malformation can easily expand due to high blood pressure, consuming alcohol, caffeine, smoking, carrying heavy things, doing physical effort etc. You can imagine it like a ticking bomb. I would definitely want to know details about it and especially to find the best treatment method (microsurgical resection, embolization, Gamma Knife or the combination of them). I suggest you to do some research, read about these treatments, make your notes, note your questions and ask for several opinions. There are many good neurosurgeons in Europe who can give you advice. I was treated in Hungary, by Dr. István Hudák, who is also working in Netherlands. Unfortunately I do not know in which hospital exactly, maybe you could ask around. He is very good, I can strongly recommend him, he has serious experience (he has done over 17.000 DSA interventions). He embolized my AVM completely in 3 interventions, there were no complications, nor neurological deficits at all, I am felling very good thank God. He is very careful, he looks for the best interest of the patients.
I hope this information will be useful, if you have further questions please contact me
Thank you for this information. The doctor more or less summed it up.
Thank you so much for telling your story. It is so hopeful and i am happy for you that you have been treated without side effects of rest symptoms !1 Though I realize that the story can be very different too… I hear the AVM too, but heard it most of my life but never really paid attention to it. Now that I know what that sound is, I am aware of it most days. I also have sleeping problems but not due to the sound the avm makes. I think I also feel the AVM as a kind of burning sting or light pain, although they say that the AVM itself cannot hurt. Bea, also thanks a lot for the name you gave of the neurologist. I will look him up and find out in which hospital he works, Hongary is not that far (I’ve been in Budapest once). Probably I will get back to you if I have more questions.
I have been diagnosed in March 2018 with a small AVM (1,4 cm) on the right temporal lobe. Diagnosis included both an MRI and a digital angiography which was considered an integral part of a proper diagnostic analysis. There are certain signs of an old hemorrhage but it must have been something very light as I had not realized it even happened. My AVM was and still rather unsymptomatic. Some tinnitus (non pulsative) and that’s it. I have discussed with quite a few (maybe too many…) doctors in the US, Germany, France, Switzerland, Sweden, Greece and I have also read a lot about it. There was no one who suggested that I rather “wait and see” as the risk of doing so in the medium to long term is higher than the risk of treating the AVM. These risks can be quantified based on statistical analysis of precedents and the specifics of each patient’s situation. The latter is very important. Every case is different so there is no magic recipy that can be appied to everyone. For a patient who faces no or little issues with his/her AVM the decision for a treatment is even more difficult as it must be purely based on logical analysis of potential outcomes. Reason has to prevail over emotions. It’s not easy, I reckon, especially if recommended treatment is microsurgery. After quite a few months of analysis (no need to hurry in my case, that’s what I have been told) I air towards the microsurgery treatment option to take place in early September.
All the best in this journey. I am sure you will find answers and you will take the best decision that works for you.
Hi I had a R temp lobe AVM which was treated by by gamma knife twice almost 18 years ago now. My haemorrhage was back in 1979 so I had many years with an untreated AVM as there was no treatment for me at that time. I tried not to let it stop me living my life but we didn’t get all the advice you do now. Memory problems are my main issue after treatment. I didn’t think of it as a ticking time bomb it was just something I lived with I suppose. Hope everything goes well for you whatever you decide. [quote=“Bea, post:5, topic:20804”]
I too had a small AVM in my left frontal lobe, detected after a bleed.
I also enjoyed sport and weight training, and I think that helped me recover from the craniotomy and bleed… the whole ordeal, actually. I was back at the gym within two weeks of the surgery.
Wad your AVM very deep? And did it, or subsequent treatment, affect your ability to find words…?
I ask because I still have trouble once in a while.
Hello Lazaros, Sorry for my late reply. Thank you so much for sharing your story. You say it well that it has to be a rationalized decision when symptoms are relatively minor, which makes emotions difficult because now I don’t really know what to feel. Relying on my ratio has helped me up until recently but I must say that now more emotions come to the surface. Also I was told that I do not need to hurry.
Lazaros, It must be surreal for you to look forward to the surgery coming so near. Wish you all the best this month when preparing for this!
Hi Harly, thank you for sharing, especially your thoughts about the avm while it was there. I realize that now that I know what is there and all the information I can read on internet, my attention is fully drawn towards this avm. So a lot of physical symptoms make me more or less afraid that something is wrong. It creates some sort of freeze reaction sometimes. So, not knowing all this information I guess sometimes can be better. My doctor said that there is so little known about factors that can evoke a rupture that I should not live to it. I can do sports and all. This is contrary to what I read here and there.
It’s not a walk in the park for sure. On the other hand any treatment it’s an opportunity to get rid of the problem and that’s the way I am looking at. Science has progressed so much and the technology behind any treatment method is nowdays much more advanced than it used to be. I am now having good relaxing holidays with friends and family. Best, Lazaros
Approximately 80% of my AVM (3 cm, Spetzler Martin Grad II.) was in the surface, the remaining 20% was entering deep in to the brain, but I did not had any speech problems, that was probably caused by the bleed you have suffered. I heard about someone who had to learn again to speak and write in his mother tongue after he suffered a bleed.
Thank God I did not suffer a bleed but I was very close to it, I already had 2 intranidal aneurysms formed, probably these were causing the symptoms I had started to experience. I only heard a pulsatile sound in my left ear as my heart was beating, that was the reason why I did an MRI scan and that is how my AVM was discovered.
It is nice to hear that you have already returned to sport and weight training my surgeon suggested to me to take it easy until my first control which will be in October. I hope that everything is going to be fine and I can finally return to my normal life
Enjoy your holidays!
My family is from the Netherlands my avm ruptured in March of this year without warning. I had an emergency crainiotomy to save my life and after an angiogram which was how we found out about the AVM. It has been the toughest times for my family, wife and son. I am blessed to have had amazing doctors here in Florida though. After my angiogram, I had a successful embolization of my AVM. The doc said mines was an easy fix but very hard to get too. My AVM was located in my parietal lobe area, and I did suffer from headaches most of my life too which was a symptom. I just paid it no mind (stupid me). Listen to multiple doctor’s advice/opinions. My advice is to do the angiogram and look for the best docs at around. Waiting for a rupture is not a great idea trust me. I went through one. I had to re-learn how to walk, run, drive, coordinate and other stuff all over again. After 4 months my doc/surgeons cant believe how well my recovery has gone and how i am at work already. My rupture was huge, but anything is possible with passion and the power of love!
I am here to support!
Thank you for sharing this with me mistervanderree. I am sorry to hear you had a rupture this year, but good to hear about your recovery and I wish you more good progress to come the coming time. I have decided to do the angiogram (though I am scared for it). The big panic I had when I just heard about having avm has waned a little bit. I want to make a controlled decision. Thank you for your support!
Many thanks Richard. Sorry for the delay in getting back but I have only just returned from a holiday.
Yes as Richard says, I have a large (5cm) Cerebellar AVM. When diagnosed the docs told me it was very deep down and there was a high risk of deficit it I had any treatment, although the option was there if I wanted it. To cut a long story short I decided to leave it be and live with it. I’m lucky that it doesn’t cause me too much problem day to day. And taking unnecessary risks seemed stupid. However in 2016 I had a ‘stroke mimic’ and they think this was attributable to my AVM. I am in the process of going for more tests to see if anything could be done for me in the future. Best of luck.
Thank you Lulu1 for sharing your story with me! I sure hope there will be more treatment options for you in the future as technology is developing.