Hi there they found my son’s avm thru having a bad headache migraine with MRI and we just had radiation treatment in November he is 27 and his is small about 2 centimeters so it will take about 2 yrs to dissolve he had seizure last yr now on meds for that but a little bit of hair loss and so far doin ok with his age we opted not to have surgery due to some loss so maybe like all else get a second opinion due to his age etc. I am in az his neuro team was great good luck keep us posted too I know as a mom this really stressed me out and anxiety issues for him too but we first learned of this in 2013 and then the seizures in 2015 so 2016 after getting medical insurance we started this process had the radiation treatment in 2016 Nov
Hi Lisa,
Yes I agree with Richard, do get a second opinion, the good thing is that your son has only had migraine, I say only, they’re not pleasant but they are associated and it’s good that you have found out now. You can go for a while without the AVM symptoms becoming more apparent and life affecting. I am 36, I was diagnosed with an AVM when I was 34 after two grand mal seizures over the course of an afternoon in December 2014. I had migraines from the age of 8, they were much worse in my teens but looking back when I did not know anything about the AVM I really pushed the bracket, physically and mentally, I worked super hard at school, college and university, I worked 3 jobs and studied, I built sets during my degree, put together theatre shows and films, didn’t really sleep and had a full and active social life.
It was only really when I turned 30 things became more difficult, I started really suffering with more intense migraines, looking back on it now I understand it better, but my career took an upswing and I started working on large feature films, long hours, a lot of driving masses of multitasking. But at the end of the second 10 month project that I did in 2014 I was so tired, I had never been as tired, I also suffer from endometriosis and put it down to this. I had had 5 operations by this point. But no amount of sleep helped. I seemed to have a hangover every day- I had stopped any sort of social drinking by this point to see if my tiredness would improve and I was excercising everyday, running and doing a yoga workout but where it had given me energy I just needed to lie down and sleep. I was also light sensitive and seemed to have a headache from when I woke up most days. Again I put this down to stress build up and years of overwork. I had a reputation amongst friends and family of never sleeping until this time.
I am explaining all of this to say that my experience of having an AVM of a similar size to your sons has been like this. I think I had more migraine activity when I was a teenager because my hormones were more active. When the trouble started for me when I was 34 it transpired that I was perimenopausal. Again I was experiencing hormone fluctuations. My worst migraine usually book ended my periods.
I am in London in the U.K., I managed my diagnosis by reading a lot. I read a book called Saturday by Ian Mc Ewan, it’s based on a day in the life of a neurosurgeon but it helped me empathise with how someone working like that thinks and manages situations. It put a lot of my experience of practitioners into perspective. I sought a second opinion after receiving one variety of diagnosis. I weighed up the kind of person I am and how I manage illness with the menu of options presented by the diagnostic tests. I too was told I may experience left side impairment, but, given my age and that I was generally perceived to be in good health I had a good chance of recovery. My feeling and mantra was that I wanted to navigate the shortest route out of the position I was in. I reasoned that I did not want a piecemeal solution to the problem and I was prepared to take a calculated risk so I elected to have a craniotomy. I transferred all of my care to a surgeon I trusted who completed comprehensive tests and we discussed the treatment options and she asked me to choose how I wanted to proceed and if indeed I did want to proceed.
On balance it was clear it was a complicated as I wanted to make it, I tried to be emotionally detached to help make clear descisions. It was hard for my Mum certainly as she felt guilt for many different reasons- but I asked her to put that aside and just support me if I asked and step back if I asked and she did this in the months before the operation. I feel lucky that I have been treated now with current surgical techniques rather than when I was 19 in 1999 as the technology available now is incredible.
I am 36 now and I have returned to work, I cannot say my recovery has been easy psychologically but I am a success story from a physical point of view. I am able to multitask and more or less live the life I lived before. It is modified but, perhaps that is no bad thing. I had to do a digital switch off in the two weeks after surgery-no screens and had to allow myself sleep time. I still get tired easily but I have nearly completed another 10 month film job in a senior role.
So please don’t be scared, do be logical and deliberate and research, the human brain is amazing at managing and coping
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Thank you for the response. What did you decide to do? HIs is 2.8 cm at its largest section and it is in the Supplementary motor area
I read a lot about the condition-there are a lot of variables and every single AVM is different. I based my decision on this research and how I am, the way the migraine and epilepsy diagnosis had changed my life- but the severity of the migraines had been slowly changing my life over the years anyway. I had a robust discussion with a professor of surgical treatment for one of the treatment options I was initially offered and he was very helpful and in my case he recommended me for direct surgery with full tests. So I did this but at a third institution in London. The Professor advised me that any surgeon I saw should carry have carried out at least 15-20 procedures a year treating AVM. I researched again and found them. It was a pretty rigorous process, my AVM was in the SM cortex and it was close to the area affecting my general left side- hand and leg most likely to be affected. I can’t express clearly enough how each AVM is different- I had a craniotomy with laser guided microsurgery that resected the AVM. This worked and I drive again after a 13 month exclusion and my epilepsy is controlled by AEDs. I do feel every day I get a bit better and then some days I step backwards but I am very lucky. It is best to try to stay in a state of what can we do here- what can I do to make this better, how can I make the most of time with practitioners.
I should also say it is your son- for the sake of his recovery and his future it’s best that he feels that any thing that is done, how you proceed together is his choice. That the treatment- any treatment is not done to him but he actively chooses it, if he chooses it, subtly different but psychologically really important- a sense of control. One of the things that is so difficult with AVMs is the sense that it is volatile, but this increases with anxiety, that they are uncontrollable. But from another perspective the human body adapts- because it is congenital he has grown up with it and his brain is accommodating it being there and will continue to try keep working, I saw my migraines as my brain mechanically managing the AVM. This change of perspective helped cope a lot.
I chose Gamma Knife. It’s been about 6 weeks since I had the procedure. I’m supposed to have an MRI follow up every 6 months for the next 1-3 years. Each option has different risks and I felt this was best for my particular situation. My AVM is opposite your son’s by the cerebellum and pons in a difficult to reach area.
Hi, and I will be happy to maybe help you ease your anxiety a little. I am 66 now, and when I was 8 years old in 1958, I had an AVM burst. It was most likely bleeding on and off before that. I did have symptoms like bad headaches. Black spots in my eyes and a bruit - a swooshing noise in my right ear which was there for a few months. I told my mother, but she did not believe me. She said I was faking and whining like my Dad did. He did not fake, he was deaf. My Grandmother lived with us, us being 6 kids, aunt, uncle, mother, father and grandmother. She heard me and got a ride to an eye doctor with me. She did not drive. The eye doctor was seen because she knew I said there were spots in my eyes. The eye doctor saw whatever and sent me to a neurosurgeon. There were no pediatric neuros then. I got there after a short time, but before I even started any tests, I had a huge seizure and a coma for a week. I woke up, I remember, in a baby crib, and was I mad? Yes because I was in a crib. Anyway, back then no one knew much about AVMs. There were no CT or MRI scans. There were barbaric tests, spinal taps, etc. The doctor finally did an exploratory craniotomy based on the EEG. It showed an “area of irritation” in the right occipital lobe, the back of the right side of the brain. It is one of the major parts of the visual cortex. After it was done, I woke up and had lost the vision in the left halves of both eyes. (I now know this is called homonymous hemianopia) They did think I had cancer, and may have taken more cells then they needed; but, I lived, and am very thankful. I have two sons, had a great husband. All the information I have is from seeing my records one time, getting a confirmation when I was 35 or so, from my old family doctor. I wrote to him, he wrote back. He said they thought I had a an astrocytoma (a bad type of brain tumor). Then he said they later knew it was an AVM. He told me it was about a centimeter. All the rest I either learned from other relatives and then finally the internet. My mother never said anything except never to tell anyone who did not have to know that all this happened to me. So, I did not. She did say something about a blood clot. No one ever said much about the vision loss. I was a good student prior to the AVM, but forever after was not. I graduated from high school, but never really figured out math again. I did take a lot of office classes, and ended up working as a Paralegal 2 for a state Dept of Justice. I do not drive, but managed to get where I needed. It has been a struggle at times, but I know now I just never gave up trying, while also trying to live with my losses and act like a normal person whatever that is. I stopped trying to be anything but myself maybe 10 years ago. I now have Jim, a Guide Dog for the blind. He is my left side.
Like the others I would get a second opinion if you haven’t already. And then, if given a choice of craniotomy or the stuff they now do (which I know nothing about and cannot compare them myself), I know I would say get this thing out of my brain now. The new treatments seem to me to take a long time to obliterate the AVM, and it may be a craniotomy could be necessary anyway. That is just what I have learned from being on this site for many years. I will be checking to see how things are. I am hoping everything is ok, and you will finally get to feeling yourself again. Your son will, too.
beans
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It’s very interesting the conclusion that you come to about the different treatments that you have read about here and your lifetime experience, I have been glad you wrote about it.
As a parent I could only imagine how you feel BUT as an AVM survivor who had a bleed at the age of 30 & had to have craniotomy for removal I can assure you at his age it is a great time to tackle it… I was always told the young age factor helps with recovery and overall outcome of the operation as the body is much stronger!
When I had my surgery in 2011 I was petrified also & didn’t know what to do… I was told a month before I had an AVM due to a CT undertaken as I had a headache for 1 week after the gym, which to date told was never related to the AVM… 1 month later I did have a bleed & had to have surgery… it’s a slow recovery as you would expect for such major surgery but I encourage you to be positive about it & build your sons confidence up as much as possible.
There is light at the end of the tunnel & I was also given the risks associated with surgery such as a limp/weakness in a leg etc but can say I kept strong & put my faith in God’s hands & live a normal life after 7yrs…was it easy? NO! Did recovery take time? YES? …but I’m AVM free & considered a survivor & see there are some not so lucky but to be alive is a blessing you cant overlook… your son will be fine & needs that support & strength now more than ever… at his age he should bounce back quick & the risks associated with not dealing with the AVM are far worse & outweigh the risks in removal… the neuros today are well advanced & know what their doing, however if in doubt seek another opinion… God bless!
Just to give you some sign of hope but you have luck on your side that they discovered the AVM before it could rupture. I also ended up having craniotomy. My story goes way back but My AVM did ruptured when I was just 10 years old and was paralyzed on the right side of my body for a month. To this day I’m in great health no longer paralyzed but have just some small problem with my right foot it gets tired if I’m jogging for a long distance and it goes flat foot. Other than that some short term memory but its not that bad just the small things so that’s why my cell phone has all the alarms and notes that I put on my phone now. Best of luck to you and your son.
What treatment did you decide on?
I went with Gamma Knife December 15, 2016. I’ll have my first MRI in June. I haven’t had any issues since then.
What are you thinking at this stage?
Hi Lisa first i would like to say that I’m sorry for your sons diagnosis i was 15 when i found out about my avm and unfortunately it was discovered because of a bleed. This happened in 1992 three weeks before Christmas . After two and half weeks and deciding to not have surgery because of multiple risk factors including going blind they sent me home on Christmas eve with little to no improvement. The day after Christmas i returned for some more tests and too everyone surprise the blood had disappeared. They never found were the hemorrhage started. Not having the surgery allowed me to have a normal life. I would never tell someone else what to do with their own body and when i was 15 my wonderful parents gave me the choice to have or not have surgery. Now I’m 40 and i do have some complications mainly headaches and some slight vision loss in my right eye but I’ve had the chance to live a normal life. Despite the doctors telling me that if didn’t have the surgery and if i went home for Christmas i might die here i am 25 yrs later. All I’m trying to say is that doctors aren’t always right and even the Best doctor can be wrong so get mutilple opinions and please dont rush into anything brain sugery is inherently dangerous and unless it’s absolutely necessary should be a second option. They say he might have a limp if you do surgery but there is also the chance that he will go his entire life and nothing will ever happen at all. Again I’m not saying do the surgery and I’m not saying don’t have the surgery what I’m saying is weigh all your options and let your son make a well informed and thought out decision. Good luck to both of you i hope your son stays well.
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How are things going to you and your son?
I’m sure the people on this thread are keeping you in their thoughts.
Hoping all is as well as can be
Seenie from Moderator Support
Hi there,
Thanks for reaching out to me. I posted this months ago. We made the decision to have the surgery and my son had the surgery February 15th. He had some delayed Paralysis on the left side but within a few weeks regained all use. He is fully cured from his AVM and it is completely gone. He is now back to school and back playing baseball and is doing phenomenal. We are happy we chose the surgery and know the risk is completely gone and we do not have the black cloud. We were fortunate to have an excellent vascular neurosurgeon in San Diego who made the difference I believe. I’m happy your decision worked out well for you. I wish you nothing but the best in the future, take care
Lisa Shanahan
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Thank you, Lisa, for letting us know how well this has all gone for your son and your family. You have, no doubt, learned a great deal about the procedure and the recovery, but also about the emotional toll this kind of event takes.
Please don’t forget about this community: from time to time there will be people who arrive in very similar straits to yours. Being able to give the some support in the way of reassurance could mean so much to them.
What an absolutely inspiring story yours is. All the best to you and your son.
Seenie from Moderator Support