Hi there. I am struggling as I learned my 16 year old son has an AVM yesterday. WE already saw a top neurosurgeon in San Diego this morning. It was found through an MRI and MRA for migraines. A little back ground….my first husband died of a heart attack when I was pregnant with my son. There is suspected marfans syndrome which is a connective tissue disorder and we are waiting on the genetic testing results. Due to the history, the neurologist decided to order these tests and it was found. It is in the top right and it measures 2.3cm by 1.4 cm if I remember correctly. He has never had any symptoms from it. After discussing the options with the doctor, especially with his age being 16 and the length of time over his life for it to rupture, I think we are going ahead with surgery. It is a craniotomy which scares the living daylights out of me. The surgeon is supposed to be one of the top vascular neurosurgeons in the country. We are all walking around in shock and I am struggling with anxiety etc. I have went through quite a bit in my life with his fathers passing when I was pregnant, my health issues including a heart surgery ablation a little over a year ago. The internet is scary and I pray my son will have a safe surgery. The doctor said he is going to do an angiogram next week to make sure there aren’t anymore smaller ones, but he doubts that. He then will schedule the surgery I think. They told us the day before the bif surgery, they would do an angiogram type catheter procedure where they will put glue or something like that in the avm, then the next day do the big surgery to remove it. I asked about issues post surgery brain wise and he said there is always risks but he only forsees a small chance of some weakness with his left leg, I am terrified and don’t want him to h=end up with any impaired function or seizures. I am looking for positive support and stories to help me get through this and be strong for my son. I honestly don’t know how I am going to do this but I have to for him. It seems a blessing they caught it now and they can get rid of it. I appreciate any and all responses.
Lisa
First, welcome to a new family. We’ll all try to stand with you as you work out what to do.
Discovery is a scary stage but I’d encourage you not to think that your son has an immediate and pressing danger, unless the doctors say as much. There are a number of people on the site who have shared their stories with us who, despite discovering an AVM in early life are just living with it and keeping an eye on it. We can’t give you medical advice, or judge the severity or benignness of your son’s AVM – you do need to rely on your doctors for that – but there is a range of possibilities with an AVM.
My own view would be to get a second opinion if at all you are not comfortable that you’re getting the right advice. Unless there is an immediate risk, there should be plenty of time to get supporting advice and make a balanced decision.
AVMs are believed to be congenital – present from birth – though i am sure they can change over time. The stats I’ve seen suggest that perhaps 1 in 1000 people have an AVM, yet only 14 people per million are discovered / diagnosed each year in the US, so many people go though their lives without their AVM announcing itself.
For my part, I’m waiting for a catheter embolisation procedure which we hope will be enough to sort me out but I’m 50. I’ve made it 99.9% of the way to my 50th year without knowing I’ve got an AVM and without it causing me harm. I can’t say I’ve ever had migraines, so there may be a sign you need to pay attention to there, but my AVM has only become apparent through pulsatile tinnitus in the last 15 months, and has started to make me dizzy since October. So, mine is changing and I want to get sorted.
Hope it helps to say “hi” and “welcome” and to share some thoughts. I’m sure others will share, too.
Very best wishes, Richard
Hi Lisa,
I agree a hundred percent with Dick, unless there is an immediate risk do not rush into any decision. You should get as many medical opinions as possible. I was asymptomatic until 43. Even though my AVM didn’t rupture, I chose a series of preventive embolizations (4 were initially proposed). The first one went fine, but the second procedure caused left sided weakness.
The key thing I learned is that Brain surgery of any kind is extremely risky, and you should get as much info as possible and weigh the pros and cons very carefully. God bless you and your son and Good Luck!
I’m sorry to hear that your son and your family are having to go through this. There no question that it’s a serious issue that needs serious thought. I would strongly recommend a second opinion as well. With me it sort of made it easier to accept, especially when I received the same information from two independent doctors. It was pointed out me that There were options, surgery, Gamma knife, or do nothing. Doing nothing wasn’t an option for me. Weighing out my the particulars in situation (age employment, health etc) I chose the gamma knife. Once the shock of the news settles break it down and take one step at time, talk to doctors, look at your options, give youself time to comprehend the all of the information, and the you be able to come to the needed decision with peace.
Best wishes
Thank you for the responses…We are seeing one of the top vascular neurosurgeons in the country and feel confident in him. Because he is 16, the chance of rupture is bigger. I have seen the effects in people with it bleeding and rupturing. I do not want that and neither does he. He felt the area was a good spot for surgery and felt the only repercussion could be some weakness in one leg. My son feels he should have the surgery. I feel this is a time bomb that could bleed at any time. This is our perspective right now. He did give us the other options, but the gamma knife takes 3 to 5 years to resolve it and it may not work fully. Is there anyone else on here that was young, didn’t have the rupture yet, and had the surgery to remove it?
Hi JasonLisa,
I found out about my AVM one month after retiring from the Marine Corps. This was in Jan 2013, i callopsed at work and it was found at the ER. Here is my story,
My AVM was located in my Right Parietal Lobe. I had an angiogram, fuctional MRI and 2 other MRI’s initially. The first nuerosurgen i saw said that it was not operable. When i heard that i went ahead and scheduled a gamma knife procedure. 5 days before Gamma knife i went to get a second opinion. This nuerosurgen said that a crainiotomy was an option. When i heard that, i sent my films to the Barrow Neuroscience Institute in Arizona, where Dr. Speztler reviewed my films. FYI, Once he receives them he will give an opinion in 48 hours. I did alot of research on Nuerosurgen’s and i felt he was one of the best in the world. One of his residents called me within 48 hours and said that doctor Spetzler reviewed the film and can remove it with a 90+ percent chance of success. The next morning I cancelled the gamma knife procedure and scheduled the crainiotomy.
The procedure consisted of the first 2 days being embolizations to stop the blood flow feeding the AVM. The 3rd day was the crainiotomy. The procedure was successful with a 10% loss of my left peripheral vision. In my opinion this was the best decicsion for me.
I will tell you that finding out that your son has an AVM is very scary, one of the things that helped me through this was talking to someone who had went through it. I would be more than happy to talked to you about my expierence further. It might help to talk to someone. My name is Carlos, Phone # is 9515387529.
Hi My name is Helen . I had a craniotomy way back in 1984 when I was 16 years old . Here I am 34 years later about to turn 50 this year . I have had four sons am happily married am a registered nurse and midwife . My AVM was over 3cm and I think I have turned out pretty well . ( dont ask my teenage sons though they might not agree!!!)
Thank you So much for the response and info. I read your doctor doesn’t head up the center on Arizona anymore and I am not sure he is still practicing. I have an HMO but luckily we go to Scripps in San Diego that is supposed to be awesome. They did my heart surgery last year and wereally wonderful. The vascular neurosurgeon is highly recommended but it is hard as I want my son to go to the absolute best. I think it might do us well to talk to you…I will ask my son. He is trying to process it all and being 16, it is tough. I would like to know ow about your surgery recovery etc. as I am nervous for that and for something going wrong. I greatly appreciate you reaching out with great information.
Thanks so much Helen…where was your located? I am assuming a good spot since you had a great outcome. I appreciate your response!
Jasonlisa
If you click on Helga’s avatar (the butterfly in her case) and then click on it again, you will find more information about her. A good trick to know!
Seenie
Lisa,
everything you guys are going through is completely understandable. I know
once i found out i had the AVM, i went to the internet to do as much
research on the brain as possible. It was amazing how much i learned about
the brain and AVM’s in such a short amount of time. I will tell you it
helped to a point but actually talking to someone who had been through it
helped me understand it much more. Every AVM case is different but the
emotions that we go through as people are pretty similiar.
As for recovery, i had embolization surgery on Tuesday and Weds. Thursday
was Crainiotomy, i was out of the hospital on Sunday. My recovery was a
total of 6 weeks before i was back at work.
You can call me anytime, i will keep an eye out for a San Diego number.
Carlos
I had the same thing at 34. The new technology could have helped me. Good luck. Keep faith in your doctors.
Hi mine was located in my left frontal lobe. I actually had two craniotomies as at the first surgery it was decided not to attempt to remove the whole lesion as it extended too deep into the brain and the risk of deficit was too high . I had a bleed two days after surgery and it was decided that they would go back in and risk the deficit and remove the whole lesion . Keep in mind that this was the early 80s in Australia this is now 2017 and you are in America with amazing technology. I was involved in a study around this surgery that actually showed my IQ went up!!! I dont believe I would have completed my studies or had my wonderful life without this amazing surgery . Please feel free to ask me any questions. I can only try to understand what it is like as a parent making there decisions for a 16 year old as I was once the 16 year old having the decisions made for me.
Hi!
Welcome and I’m so sorry to hear about this but I agree that it’s very important to take your time, do your research and get a second opinion from a renowned vascular neurosurgeon.
I just turned 49 and had my last embolization on Aug 26 2016. My AVM was located deep in the left occipital lobe near vision and language so a craniotomy was out. March 6 I will find out if I need radiation but my neurosurgeon says probably no because of my age and the success with the embolizations. I actually had 2, one they found when they did the first one.
Mine presented first as a seizure while I was driving and I drove my truck head on into 2 vehicles, thankfully they were all ok. 10 days later it ruptured and the hospital I went to with the car accident missed the AVM because they really were primarily a birthing hospital. This time I went to Albany Med and they knew right away what it was. It is so important to see the very best. Now almost a year from the original car accident I only have numbness in my right leg, and headaches, and a few silly deficiencies so to me I got the best possible outcome. You wouldn’t know it if you didn’t know me. There are always going to be some risks but he is young so with the right team he could have a very good outcome. Super important to stay positive and do your homework. Welcome again and keep us posted. God Bless!
-Lorna
Hello Lisa,
First off, I’m sorry to hear the news about your son. I have a 16 year old son and I’m glad it’s me vs. him with the AVM. I just discovered my AVM last August, so I’m only 6 months ahead of you. The first month is very scary. My advice is to read up on AVMs on the internet, but when it gets too scary, shut it down. Even this site can be scary.
At first, I was in a hurry to do something, but then the physician said, “look, you’ve had this for 52 years, you have time to decide what is right for you.” It’s important to stop and breathe. That is easy for me to say today, but it was hard for me 6 months ago to do.
Regarding second opinions, I got eight opinions. I have a 5mm AVM around my 5th nerve by my brain stem, which is a critical location. Neurosurgeons thought I should consider surgery, interventional radiologists suggested embolization, nuclear oncologists voted for gamma knife. It made me think of the phrase, “if you only tool is a hammer, everything looks like a nail.” What it comes down to is you have to do the research, and receive insight from their perspectives and opinions, but then you decide what is right for your son. You have the right to receive personal revelation and you’ll know what is right.
I know what you are going through. It is hard to receive this news. I’m sorry to hear that your husband passed away during your pregnancy. The thought that comes to my mind is, “wow, Lisa can do hard things.” Cry when you need to. Read things when you’re feeling stronger. Stop when it’s too much. I wish you well. Ask whatever questions you happen to have. Michael
Hello
I had a cranial( occipital lobe AVM that did end up rupturing. I had cranial resection after angio with embolization followed with another angio. The result has been brilliant. I have had no lingering physical defects ( I had initial vision loss from the bleed that has stayed but not from the sx) I do have pain management but it has become less and and less and probably would have been a better result had it not ruptured. I am 40 so older people don’t bounce as well as the kids do. Feel free to contact me any time to discuss any part of my journey. It’s been just over a year.
Hi Lisa,
We have a 14 year old daughter that has a brain AVM. We just had her first embolization last week. She did great! We are going to Vanderbilt Children’s Hospital and love our neurosurgery team there. She will have 2-3 more embolizations and then a craniotomy. I know how you feel! All of this is so scary and at times it’s hard to not worry! We are like you in that her AVM was found accidentally during a MRI for a possible concussion. We are grateful that it was found this way and it has given us time to research, ask lots of questions, and explore our options. Our daughter’s AVM is very close to her motor strip, so we had a functional MRI done to give a clearer picture of her situation. Our neurosurgery team recommended surgery, and it was our hope all along that the AVM was in a location that could be surgically removed. I will be praying for you and your son.
Thank you so much for your response…I am so happy for you. Can you tell me how big your avm was or the grade? Also, the location. My son has an angiogram Thursday and we are hoping to get a clearer picture of it. It is approximately 2.3 by 1.4 cm
Thank you for your reply! I am sorry you ( we ) are going through this. How big or what grade is your daughters? Our son’s is 2.3 cm by 1.4. He has the angiogram Thursday to get a clearer picture. I am sorry your daughter collapsed and had a seizure, how scary but thankfully no bleed! We are planning on the surgery as well…with one embolization the day before. I would love to stay in contact with you. We are located in San Diego. How is your daughter dealing with this? My son is having a hard time as he is a baseball player and a sophmore in high school. He is worried etc. He too has been through a lot and feels he can’t catch a break. Maybe they can chat so they have someone going through the same thing to talk to? My email is ■■■■■■■■■■■■■■■■■■■■■■■■■■ I will be praying for you as well!
Lisa welcome and relax at the same time. I am 60 years old and by accident I found out I had an AVM in the right parietal 2.8cm diameter 4 years ago. Going back me and my friends remember that I had a lot of headaches in college that I thought it was either from studying, too much work or hangovers. 4 years ago I had an angiogram and depending what specialist I talked to the options were radiation or surgery. After more than a year of agonizing, reading and exploring possibilities I chose radiation knowing that I increase my chances of rupturing until it goes away. Once I made the decision I felt relax and stopped worrying. My surgeon a very respected doctor at UCSD agreed with me that it was worth trying radiation because he also told me that surgery had a chance of paralyzing my left side especially the leg since the AVM is next to the centers for movement and sense. January 2015 I had one dose of radiation. The 1st annual CT and MRI Showed 42% reduction from 2.8 CM diameter to 1.6cm. Jan 2017, 2 weeks ago the new CT scan showed that the AVM had disappeared. The MRI which is more sensitive says that the AVM is still there but there is minimum blood flow however my doctor can’t even see it and all the veins that where enlarged due to extra blood flow from the AVM are back to normal. Good luck to you and your son whatever decision you make but you are lucky to be in this position before a rupture. Please contact me if you have any questions. I live in San Diego and can’t say enough about the doctors at UCSD without underestimating any other doctors in the world. The 3 doctors I worked with Carter, Khalessi and Hattangadi are the best.