16 Year Old Son Has Brain AVM- Looking for Answers!-UPDATE

**UPDATE- We still are waiting on an appointment. His regular Dr on request of the specialist is ordering an MRI and MRA with contrast. The specialist wants this done before my son sees her. Hopefully insurance doesn’t drag their feet with approval. I do know the neurosurgeon he will be going to, from everything I have read about her- she is amazing! This makes me feel better! My son has started the medication for his tremors that the neurologist prescribed, as well as mega doses of VitD. A day after starting the meds he was extremely tired and cut his time short with friends to come home and sleep. I went to wake him up for dinner, and he had a really bazaar sort of hallucination. This went on even after me leaving him alone for a couple minutes and going back to him. Five minutes later, he didn’t remember any of it. Not sure if this was meds or not. I did find out that the location of this is somewhere in the occipital lobe. I say somewhere because in one part of the report it says medial right, and another it says medial left. :confused: (The MRI was done in the office of the neurologist he saw). You all have been wonderful! I really appreciate the stories, information and suggestions! It helps me more than anyone could know…

Hello Everyone, My name is Denise. My son has been seeing a neurologist for tremors he has. They ordered blood tests and an MRI. We went in yesterday to go over the results of the testing. We were told that his tremor was Essential Tremor. The Dr. then said that there was a spot in my son’s brain, and said it had been there since birth. I did not need this to be pointed out to me on the MRI scan, I could see it plain as day. He said it was Arteriovenous Malformation. Since I have had several close relatives with aneurysms , I asked it he was sure it wasn’t and aneurysm. He said “I don’t think so”. I asked if this needed follow up, or yearly scans or anything. I was told “no- nothing happens with these, we don’t need to follow up”. He said “the MRI tech. said that a MRI with contrast is needed, so I am obligated to order one”. He put him on medication for my son’s tremors, and said he’ll see him at the end of September to see if the medication is helping the tremors. I was infuriated when I got to my car and read what this AVM is and what can happen!!

Has anyone else experienced this from a neurologist?
I don’t know the size, location, or anything.
I put in a call to my son’s primary care Dr., and asked the receptionist if she could have the Dr. call me as soon as possible. Thankfully, she called by the time 30 minutes was up. Of course I was crying (I had been all day), told her what my son was diagnosed with and what the neurologist said. She said she would put in an urgent referral and request for an appointment with a neurosurgeon either in Syracuse, or Rochester NY- who ever could see him the soonest.
I am so scared for my son! Are his tremors cause from this? Are his memory issues caused from this? His vision problems at 2 yrs that required surgery at 4- could that be from this? So many questions, absolutely no answers and it’s frustrating beyond belief!

Denise,

Welcome to the site!

Do you know which lobe of the brain his AVM is located in? That can indicate what sort of effects it could have.

Equally, if it is in a very inaccessible place, the neuro may be thinking it is something he cannot do an intervention on. It can be too dangerous to intervene in some places.

The other thing I would say is not everyone has intervention or needs intervention. But following up with your primary is exactly the right thing to do.

Richard

Hello Richard,

The neurologist didn’t tell me size, location or anything. Just generally, "nothing happens with AVMs, there is no follow-up.

Not true, so take up with your primary.

If you need to know the names of neurosurgeons in your area who others have used, look down the home page for “recommend a doctor…”

Thank you!

Hi you need to see the Neurosurgeon to get answers for your questions. The Neurologist is only treating for the tremors (seizures), Nothing happens is not true, but there are different ways to treat them.

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My 16-year-old son had surgery to remove his AVM (the size of a thumb) in June 2017 at UCLA Medical Center in Los Angeles. He was diagnosed one month earlier after collapsing from an intracranial hemorrhage of the cerebellum while in the dugout at his high school baseball game. He is home now and is recovering extremely well. He has all major functions but is struggling with minor issues related to blurry vision, imbalance, weakness of the left hand and movement of head and neck. All of this is expected to resolve with time. We feel extremely blessed and grateful for this outcome. We researched the heck out of this and interviewed multiple neurosurgeons in and out of town before making a decision on the treatment plan and surgeon. If we can be of any support or help please reach out.

Clearly this neuro knows nothing about avms. You need a rock star neuro where this is all they do- There is a list on here somewhere @DickD can refer you-

I am so sorry your son has this and you are perfectly right to have a full freak out.

Get the print out report of your sons mri and the disk - read the report and let us know what it says and you can bring this and the disk to the new rock star neuro-

Find a new neuro for his tremors if they dont go away after they take care of his avm-

Hugs
Angela

I am so sorry about your son! Thank you for sharing. I hope your son has a full recovery!
This is exactly what I don’t want to happen- him to have a hemorrhage. His school is about 35 minutes away from any hospital, and 2 hrs away from a better hospital and where we live isn’t much different. I have been researching like crazy (since I walk out of the office)- I’ve had some tell me not to because it will only worry me more. I am someone who NEEDS all of the information I can possible get about something. I am a cancer survivor and had I not been this way, I wouldn’t be a survivor because no one wanted to do anything about that either around here. Thank you for your offer of support, I do appreciate it!!!

I definitely had a full freak out, and trying not to think about it so much is very difficult when I have no answers. His primary Dr told me to make sure I get the disc, so that I could take it when I go to the neurosurgeon. I really didn’t think about getting the report, thank you for mentioning it! I will call them Monday morning and request that these items be readied for me to pick up. Thank you so much for the advice, Angela!!

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@bellaspersonalgifts Denise this is a wonderful site and very supportive. Please feel free to vent here. We have all done it here. It is hard to explain to people cause its one of things you cant see so people have a hard time with it.

As a person who has both been the patient for life threatening issues 2 x in a year and then a caregiver for my younger sister who almost died about 10x a in a year ( my poor mother) I personally can say it is much harder to be the care giver. That is just how I personally feel.
As a patient who went through a massive stroke and was in a coma for five days only to wake up to not be able to talk or walk then about 7 months later finding out I had an avm. I had to mourn my old self which was a super active independent woman and accept my new self. But I strove to get back to somewhere close to my new self which I am still doing. I am about to be part of a clinical trial of injecting stem cells in my brain to help heal my broken parts. Some people will feel sorry for themselves which is fine but its unproductive.

Pace yourself, dont try do it all yourself. You will make yourself sick and be of no use . I know its hard but you will run yourself down. When my sister got the flesh eating virus I would not leave the hospital and got really sick.

Another helpful thing we did for my sister was always being upbeat even though we were screaming inside with fear. My saying was if it was not going to help her we were not to say it or do it infront of her.

Another great hint is get some $10 gift cards and bring them to the hospital. Give them to any great nurses or nurses aid and they will really watch out for you.

The brain needs fat and protein to heal. My husband gave me a tsp of coconut oil in my tea or coffee every day and I drink coconut water. These are all natural and infact coconut oil is a natural anti fungal and anti bacteria.

Sorry to hear this about your son and WOW at the Doctor who dismissed this AVM as nothing that needs any attention!!!

Please know there are so many possible answers to your questions BUT only a real Neuro can give you the best answers… Please get him checked out and note that not all AVM’s require urgent attention etc so maybe that is why the original Dr dismissed it for whatever reason, however it will need to be checked properly and get other opinions PLEASE!

Im really confused why this was overlooked but glad you did your homework and research so now you can address this matter with some knowledge… keep us posted on his journey as he will be just fine… God bless!

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Denise, I have not read all the replies yet, But its clear from your original post that you should seek a second opinion, AVM’s can be left alone for a persons entire lifetime with no adverse effects, But then there is the other side of the coin where you can have issues. Best option for your son is to get another opinion, We have recommended questions to ask which are good ideas and you don’t have to ask all :slight_smile: , I will do a search for it and post it here on this thread to help. There are also recommended doctors for most areas that you can find via the search tool on the site. Take care and please do let us know how your son’s case progresses.

Thanks Martin.

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Denise,

Hang in there! I know this is scary. I never knew I had an AVM at all until it ruptured when I was 41 years old!!! And since they form during embryonic development and I never had any issues with it (that I KNEW of to that point) your son can live a very normal life. Looking back, I did have migraines growing up and headaches, but never to the point where we went to a neurologist. But knowing that he has this as early as he does - I agree with others - find a rock star neurologist and get their advice. And even if the worst happens and it ruptures at some point - let me tell you, I was 41 - had a full on rupture on the right hemisphere - mine was the size of a grapefruit at that point - 7 brain surgeries later and missing a huge chunk of the right side of my brain, 51 days in the hospital - I have some deficits today - nearly 7 years later, but I’m still pretty damn functional, even after all of that. Granted, thanks to rehab and vision therapy etc. So while it’s scary, the brain is an amazing organ and capable of healing that will amaze you! Things that I was told were impossible before this happened turned out to be VERY possible. So take a deep breath, don’t take for gospel all the “limitations” they well-meaningly try to tell you might happen if the worst happens. He’s young, he’s resilient - and if a middle aged woman like me can come back from all this - he can bounce back from whatever this throws at him. But right now -you’re ahead of the game!! Find that rock start neuro and get on the right path! That other neuro needs a good smack to the back of the head!!!

Sending prayers and hugs your way!! This group is always here for you if you need venting or more questions. I’m sure one of us has experienced or heard of it! They’ve been invaluable to me since I found it!

Blessings,

Tina

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Even though it doesn’t feel like it right now, your son is truly blessed to have had his AVM in his brain identified prior to a rupture. That’s such a gift in and of itself. I highly recommend meeting with a Neurosurgeon that specializes in the treatment of AVM’s of the brain. Neurosurgeons are medical doctors who specialize in performing surgical treatments of the brain or the nervous system. Neurologists treat disorders of the nervous system, brain, spinal cord, nerves, muscles and pain, however, they are NOT the one’s that will surgically remove the AVM from the brain - only a Neurosurgeon can do that. There are also other treatments for AVM’s such as embolizations or radiosurgery. Each situation is different. That’s why it’s so important to deal with a doctor that specializes in AVM’s of the brain. By the way, here’s a good explanation on the difference between Neurologists and Neurosurgeons: http://www.lifenph.com/reading-rscs/neuros-explained.

Good luck to you and your son… I think you’ll find this website a wonderful source of knowledge and information. My AVM wasn’t discovered until it ruptured when I was 43 years old… and 3 embolizations and 1 craniotomy later, I’m here to tell you that I’m doing great! I’m glad you found this website, it will provide you with a wealth of information!

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Denise,
Feel very, very blessed that the AVM was found prior to rupture. Please find a very qualified Neurosurgeon, even if you have to travel, asap to discuss options. Most don’t know about their AVM until they have a bleed. I’m very shocked at the conduct of your current Nuerologist to not refer you on.

Hi Denise,

This is indeed a very scary scenario. My congenital AVM was asymtomatic. It was found by sheer luck after a head-on collision in 1992. Due to all the face, head, and brain trauma I had a lot of tests that included, eventually, an MRI. The initial review of the images revealed nothing. That turned out to be wrong.

For no other reason than piece of mind I got a second opinion at my expense. Best $200 I ever spent. These doctors caught it. Even to me it was obvious on the images but somehow the first doctors missed it.

The size and location are crucial. Mine was approximately the size of a large pea. It was located in the posterior medial right parietal lobe.

I was told that with all likelihood this will hemorrhage one day. Surgeons told me the short term risks of surgery at age 32, physically fit, good health, and very active are far less than the long term risks of doing nothing. If it bleeds when I’m in my 70s, 80s, 90s it will likely be fatal or devastating with permanent deficits.

I did a lot of research and a few consultations with the surgeons at Barrows Neurological Institute in Phoenix, AZ, just down the street from my house. Google, Yahoo, Bing, and all the other online resources were not around then. So I was at the library a lot.

Your son has a lot going for him: he’s very young, still growing, will recuperate quickly, and the technology, doctors & nurses training are so much more advanced than the early 90s. And they were very advanced back then.

I don’t have children so I cannot imagine what you’re experiencing. What I can advise is to get another opinion or two, research the subject, consult with the surgeons before making a decision.

For whatever it’s worth I was told that my AVM was much more severe than they could determine without surgery. Because of this surgery was around nine hours. I went under the knife on a Thursday morning, woke up Saturday, and went home Sunday. Very unusual they told me. Mind you I wasn’t dancing the tango for many months. But I have no permanent deficits.

Unfortunately nobody can tell you with 100% certainty what will happen with or without surgery.

Be strong for your son, weigh your well researched options and then decide.

Please keep us apprised. We’re here for you, your son, and family. Just reach out anytime.

Bill

Hello Denise
I discovered an unruptured AVM about 9 months ago. I’m 53 so it’s been there that long. At first it was all consuming. I did not have tremors but I had electrical shocks go down my face across my right eye. The AVM is wrapped around my 5th nerve. Your son may have a similar issue that causes tremors.

I first met with a neurologist who had me have an MRI. From then on I delt with an interventional radiologist. They are the ones who perform the next verifying step of cranial angiograms (which BTW was not a big deal) and they perform embolizations. I recommend you meet with one if those physicians next.

My AVM is by my cerebellum and brain stem. Not a great place for surgery. After discussing with 8 different physicians, personal prayer etc, I decided Gamma Knife was best for me. I just had my first 6 month MRI last Saturday and I’m waiting for the results.

You sons AVM has been there 16 years. It will be ok to take a few months to find the right doctor and determine if surgery, embolization, or GK is the best option for his situation.

This website is very supporting.

Michael

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Hi There. My daughter is 7 years old and had a recent left cerebellar AVM hemorrhage. She was in the PICU at UCLA for 10 days. She is now at rehab at CHLA and scheduled for AVM surgery in about 30 days. I would like to to see if we can chat to hear about your sons experience at UCLA and find our more about the surgeon. Would it be possible to get in touch with you?

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