Hello community!
My name is Iris, Im 31, from Portugal. I started having strange feelings in May 2016 (I was 30) and later I learned these were seizures due to a big (5cm) AVM that occupies basically the whole right frontal lobe. It seems that it never bled. Soon (still dont know when) I’m supposed to do an angiography to learn what are the flux and pressure of the blood in the AVM to know if we should operate or not. The Dr. explained me that the right frontal lobe is responsible for creativity and human relations and that a human being can perfectly live without it and without noticing changes in the performance or behavior. I’m quite skeptical about this… Its hard for me to imagine that such a big part of your brain is there doing nothing… He explained me that removing the AVM means for this part of the brain to die, since it wont be feed anymore. I read some of your posts here and I learned that a lot of you actually want a surgery. For me only the idea of surgery gives me the shivers! This because I’m doing a PhD in Astrophysics, doing the coolest job in the world! Also I’m extremely attached to people. I have a lot of very very good friends and for me life is all about spending time with them, making memories and tighten these relationships. 3 of my friends have choosen me to be the godmother of their kids. I love to see them grow and to be present in their life. So only to think that after the operation I might decrease my performance in my work (creativity is essential in science) and change to be a more cold person makes me frighten of surgery.
Another thing that made me confuse was that the neurosurgeon said this was congenital so I had it for all my life. He explained that only now I started having symptoms because with time they grow bigger and bigger to be able to give oxigen to all the region, when it comes to a point that their big size starts influencing other parts of the brain and boom, the seizures appear (now I’m on a small dose of anti-epileptic drugs and I never had them again). But the other Dr., the neurologist, said this is a lesion that might have appeared later in my lifetime, when the seizures started. This for me doesnt make much sense but what do I know…? What did your Drs told you about this?
And as last thing I just wanted to say that I’m perfectly fine to know I have this. It didnt change a thing in my life (except now I sleep much more due to the anti-epileptic drugs and I feel more sleepy and tired). What do u have to say from your own experience?
Welcome to our community!! It is great to have you with us: I’m glad to be the first to welcome you in!
I rather agree with your confusion. The frontal lobe is responsible for all sorts of things, so it is difficult to believe an operation would have no effect. The only explanation I could think of is that if you have had it since birth – at such a size – then the affected part of your brain may never have had the oxygenation that is normal, so in your development as a child, other parts of your brain may be employed to make you you. I mean that the doctor thinks that your function there is already poor and you’re not relying on it. I don’t know. They do say that there is a “neuroplasticity” in the brain that one part makes up for lack of others if the damage happens very early in life.
Now that your AVM is starting to have a wider effect, you are noticing symptoms.
I am in no doubt that there are significant risks involved in surgery and you could come away with some deficits or changes in all sorts of things, so do do your best to get a good opinion from a doctor or two or three before committing to surgery, if you can.
There are different theories as to whether AVMs are congenital (from birth) or develop. I’m sure no one really knows and there could be both at play.
Welcome! I hope this helps and I hope some of our Frontal Lobe members can explain what effects they have had or have been told by their doctors.
Hi Iris,
My AVM was also right frontal lobe, and it bled when I was 10. After the bleed, I did have a personality change, though many people think it was for the better. I don’t think I lost much of my creativity at first, but now I am starting to question it a bit after reading your post. I had my AVM treated twice by Gamma Knife radiation, so I don’t know if that would make a difference about the entire area dying off…nor have I ever heard about having part of the brain removed.
Wishing you all the best…
-Julia
Mine was in my left frontal lobe and after my successful craniotomy I dont have ANY side effects. Im completely cured. It was worth it to get it out of my brain since the symptoms I was having was pretty debilitating and scary. But if you have an excellent neurosurgeon you should nothing to worry about.
Welcome to our community and thankyou so much for sharing your story with us I have to say, you sound like a very fascinating and loving individual!
I have a 4cm left occipital lobe AVM. I was told similar to you - that my AVM is most likely congenital however through puberty/stress or blood pressure changes the size or flow of my AVM changed causing symptoms to increase and me to lose my lower right quadrant visual field.
You’ll get a much better idea of your options once you have your angiogram done. Even when it comes to size and details of your AVM (I think I remember being told my AVM was in the 4.5-5.5cm range looking at my MRI scan).
There could potentially be several options for you: craniotomy, embolisation, gamma knife. Once you have had your angiogram there will likely be a board meeting where specialists in these different treatment types will discuss pros and cons. There is ofcourse also the option of leaving it alone, if the risks of treatment outweighs the risks of leaving it alone - It may be recommended to keep an eye on it without intervention.
As @DickD said, nothing wrong with going for several specialist opinions to reach a decision!
Thank you so much for your warm replies! It was very good to know that there are people out there that share the same condition as me and that are willing to share their stories and support. As soon as I know more I’ll say it here, but in Portugal unfortunately everything goes very slowly… I have so many questions that I don’t know where to start and in the moment I was with the neurosurgeon I forgot about most of them… I’ll only leave one here for now, maybe you can help me on this. So, when I started having seizures they were like a clock: I was taking the pregnancy pill and every month in the interruption week they appeared (exclusively in this week). So I thought these were the result of a hormonal unbalance. I went to the gynecologist and she stopped the use of the pill and putted me a IUD. This change didn’t stop the seizures, actually they stopped being periodical. Only after I learned I had an AVM and the seizures were the symptoms of it, but it was too late, I already had the IUD placed and giving me pain all over the month, every month. This was the worse decision I made in my life; for about 5 months that I’m constantly in pain due to the IUD. I tried to take it out but since its Portugal everything is delayed… But next month I’ll have an appointment with the gynecologist that putted me the IUD and I’ll demand for her to take it out. I should have asked the neurosurgeon what is my best option as contraceptive (I don’t trust condoms), but I didn’t… I’m a smoker and I know that we shouldn’t take the pill and smoke since it increases the risk of stroke (I promised I’ll stop smoking after the defense of my PhD but before I simply cannot…). Is there anyone who saw a connection between the period and the seizures/symptoms from the AVM? If so, do you have an advice of what kind of contraceptive I should adopt after removal of the IUD?
Thank you for reading and for your time.
Best wishes for all of you!
Hello, and welcome!
I also had a right frontal lobe AVM (diagnosed in 2015). My neurosurgeon at the time said that this was a “lucky” area to be affected because it was an area of the brain that was “not essential”. I was very surprised to hear this! My background is in psychology and I know that this area is associated with executive functioning, planning, organization, time management, etc. He did caution me that it could also affect my personality. I hope you will be reassured by my experience that neither I nor my family/friends have noticed any difference in my personality, relationships, or creativity. My only symptoms have been slight issues with the “executive function” areas, although not to the extent that my job or general functioning have been affected. I sometimes say that I have “acquired” mild ADHD-inattentive type, which many people successfully live with! I also say that this slight change in myself allows me to be more empathic and understanding of the challenges executive functioning deficits create for the clients I work with. I unfortunately experienced a bleed in 4/17, and had an embolisation and craniotomy. I have not had any new or different symptoms since the surgery, and fewer headaches. This week, I had a follow up angiogram that showed that the AVM remains completely gone, and I was pronounced “cured” from a neurosurgery standpoint. I agree with everyone else who has supported getting a second opinion, and I find its always helpful to write down a list of questions to ask my doctors. Great luck on your Ph.D!
It has been so wonderful reading all of your stories knowing that I am not alone. A little over 4 months ago I had an AVM embolized and removed from my right frontal lobe and am experiencing anxiety, depression, irritability and difficulty with time management. Hearing a doctor tell you that all of that is normal feels great, but actually hearing the stories of others going through it as well has helped me tremendously. I know that I am extremely lucky that my AVM was located where it was, but I don’t think that area of the brain is useless. It controls things that others don’t see, only things that we feel, which makes it even harder for us. I appear totally normal but feel like my brain is a jumbled mess of ideas that I can’t figure out.
Obrigada David pela partilha da tua historia Fico muito feliz em saber que correu tudo bem. Estás então completamente curado? Muita sorte, que tudo corra bem!
Thanks again to all of you for your kind words… I’m sorry not to take so long to answer but my computer died a few days ago… Now I have a new one and I’m ready to go back to work. Also I have some news since I had already the angiogram 1 week ago. So after the exam the Dr told me although there is no rupture anywhere there is risk of having it since there are some places where the arteries are very thin (he called them micro-aneurysms). He said that, in this hospital, when the AVM doesn’t bleed they are very conservative (I understood it as not advising surgery) but in my case since there is risk of bleeding they will gather all of them and decide what to do. My next appointment is in April. Due to another health issue I just discovered (bad things never come alone…) I was forced to greatly reduce the amount of cigarettes and to start doing exercise. I didn’t had the chance to talk with the Dr about it but I suppose I can do things like running (a little bit :P), playing tennis, dancing…? I suppose everything that do not increase too much the blood pressure (so lets say moderate exercise). Any advise on this?
Thank you again!
Hola Iris. De momento estoy bien, la MAV me la quitaron completamente y ya llevo dos revisiones y de momento está todo bien. TodavĂa no tengo el alta de neurocirugĂa porque me han dicho que al menos tengo que estar en revisiĂłn durante 5 o 6 años. Con respecto al deporte, en mi caso y tras la cirugĂa, me han recomendado que solo haga nataciĂłn y bicicleta pero sin hacer esfuerzos. El tenis no me lo recomiendan, básicamente por evitar hacer giros y movimientos bruscos que puedan afectarme, o un pelotazo en la cabeza. Un saludo!
I’m interested that you were advised against tennis! Is it a sport you used to play a lot? I quite like badminton and am wondering if it also a bit too much and to be more careful.
If you can tell me any more about what your doctor said 're sport, it would be very interesting.
Hello @DickD, for me it is difficult to explain in English but I will try! I had two craniotomies, the first one right after my bleed and the second one in order to resect my AVM. I am seeing two neurosurgeons, one on my home town and the second one on the city where I had the bleed and the surgeries. They have almost the same opinion about sports, but the second one is more strict about everything. They told me that I have my skull fractured two times and it will be better for me not play any contact-sports (soccer, basketball, rugby…). I used to play paddle and they told me that even it is not a contact-sport, ball could hit my head and also the sudden movements could be bad for my brain after removing my AVM (and most of my right frontal lobe). Just for precaution. They told me that I could swim, run and ride a bike without making big efforts. In this year and a half I have followed neurosurgeons recommendations and I did not play soccer, basketball or paddle at all. Sometimes I have the feeling that I am perfectly ok and I could play soccer like nothing has ever happened to me!!
Thanks for that! I guess, as you say, it is to do with the strength of your bone removal / refit and the actual surgery on your brain. I’ve not had a craniotomy, so not in the same position as you.
Thank you for answering! You did much better in English than I would in Spanish! My trouble with languages is that I know a very little about several languages but none enough to have a conversation in one! I’d say I can read Spanish but struggle to write it.
I have to say, you sound like a very fascinating and loving individual!