My 30 year old son just diagnosed with an AVM

Support Parents and Care Givers of AVM Patients
1

3 weeks ago following a Dr. visit (GP) who ordered an MRI for headaches our son Mark (30 years of age)was diagnosed with an AVM in the left cerebral hemisphere at the junction of the frontal and parietal lobes. The size is 1.5cm transverse x 1.7cm AP x 3.6cm in total length extending from the periventricular white matter up to the vertex of the head. The major arterial feeders are from branches of both the left anterior cerebral and left middle cerebral arteries. Major venous drainage is via the cortical veins that extend to the left frontal lobe and the left sylvian fissure. There also appears drainage veins that extend to the sagital sinus. The distal vertebral arteries and basilar artery are patent. The anterior, posterior and middle cerebral arteries are patent. No aneurysm is appreciated. The majority of vessels have no signal voids indicative of high flow. There is no mass effect, edema or hematoma evident in the region. The ventricles are not dilated. There is no mass lesion evident in association with these abnormal vessels. This information is from 2 reports one with contrast and one without.

Currently we are waiting for insurance approval for an FMRI and following that, again with approval an Cerebral Angiogram. My son has Blue Cross Blue Shield Direct Access 10. Which is a PPO and it seems not many Dr's are accepting it.
My just need to pay it ourselves so he can be seen by a Dr. at one of the large hospitals in NY City either Columbia or NYU Medical.

He currently does not want to do anything for fear of his teaching ability and quality of life. He is extremely smart teaching Advanced Honors Program Calculus and he recently became a dad for the first time.

I am Mark’s dad. We need help with my son’s condition. Any direction, information, guidance, anything which can help my son would be so wonderful.

Thank you so much.

Jake
Warwick, NY.

2

Hi Jake,

I think the first thing to consider is that an AVM--especially a "high flow" AVM--becomes more likely to bleed every year. Treatment is a controlled risk, in a hospital, with an experienced neurosurgeon, but a bleed would happen with little or no warning, and with unknowable consequences. When a doctor thinks an AVM can be treated, I find it the safest bet. Earlier treatment is safer; a younger patient recovers better, and the AVM is as small as it will ever be--easier for the doctor to work on.

Second, an AVM (again, especially a high-flow one) "steals" blood from the rest of the brain. An AVM itself doesn't actually have capillaries, so it doesn't nourish anything. All the blood pounding through the AVM superhighway is diverted from the rest of the brain. Treatment that shuts off the AVM will improve blood flow to the rest of the brain. Your son could therefore see improvements in his mental functioning.

My husband had a bleed at the age of 18, and it left him with a number of deficits. The AVM wasn't entirely removed at that time (it was before the age of MRI, so the docs couldn't see the tiny scrap they had left behind), so it rebuilt itself. He had the regrowth embolized about 7 years ago, and he's now almost finished with the dissertation that he had abandoned in between these procedures. So the sequence of events was: for years after the bleed/surgery everyone thought he was fine, a doctor accidentally re-discovered the AVM, he was treated, and abilities that we hadn't thought of as lost were restored.

The newest treatments are safer and more thorough than they used to be. If a doctor wants to treat Mark, then he has a good chance of resolving the AVM, recovering, and even improving in ways he didn't expect.

If you're in the NY area, have you looked into Dr. Alejandro Berenstein? He's a top AVM expert at Roosevelt-St Luke's.

JH

3

Hi JH,

Thank you very much for the information and the Dr. reference. The difficult part will be to convince my son to have treatment. The more information I can get the better the discussion.

Thanks again...
Jake

4

First Jake, welcome. I'm sorry you and your son are having to deal with this. There is a ton of information available on this site. Take a look around, read some of our stories, etc. I would recommend seeking the opinion of at least 2 or 3 experienced neurosurgeons. Ones that are familiar with and have treated a good number of AVMs. If there is a general concensus that Jake's AVM can be treated successfully, I agree with JH on this one, get it treated. I didn't know I had an AVM before my bleed. I was very lucky to survive and am left permanently disabled as a result. I eventually had a series of embolizations followed by a craniotomy. My surgeon felt confident that had we known about the AVM before the bleed he could have removed it with minimal damage. This was based on the location. There are many factors that determine the type of recommended treatment. Again, seek experienced neurosurgeons to help. Best of luck to you.

5

Hi Trish,

Thanks for the reply. Just starting the process, waiting for some approvals and tests.
Will seek a Dr's. in NYC at a major hospitals in the near future once I convince Mark to go.

Thanks
Jake

6

I completely agree with JH, every word. I had a bleed at 27, completely unaware of the AVM and 100% ignorant to the word "stroke." Because of my age, when I was found on the living room floor alone with my 3 year old son, everyone assumed I had an aneurysm but nope! I had a bleed, resulting in a stroke and because of the level of unpreparedness, ignorance and nearly complete denial of what was really going on, my family has been shredded (but not completely to pieces).
I personally think your son is in some form of denial. No one wants to face the possibility of a worse case scenario but believe me when I say....you don't want to experience a worse case scenario. I'm not very familiar with all that report stuff you mentioned at first so I'm not sure of the size and location but I got a basic idea. If a neurosurgeon did not declare this inoperable then I think your son should follow the advice of his Dr. and at least get a second opinion, consider treatment, research available options and hopefully make a wise decision that means more time with his baby. Consider the baby's quality of life if something bad were to happen to his father when it could have been avoided.

7

Hi Kristi,

Thank you for your thoughts. Will do everything possible to get him to go...

Thanks
Jake

8

I’m sorry that Mark has to deal with these issues which are overwhelming. I would have given anything to know that I had an AVF because that way I could have prevented having a stroke. It was very traumatic for my daughter because I was with her when the AVF bled and I fell to the ground. She had to call the ambulance and not know if I was going to Ok. Because of the stroke I couldn’t talk. You cant imagine what it is like not to able to commmunicate. I had lots of speech therapy, physical therapy, and occupational therapy. I have had migraine headaches my whole life and numerous MRIs because of it. However, my AVF didn’t appear on the MRI. It was only when the hospital did an angiogram, they saw the AVF, and the reason I had a stroke.
I think your son will come to realize the severity of the situation. It just needs time to process it all. Maybe you could share these responses with him. In the meantime, get 2cd and 3rd opinions at the best hospitals in order to make the decision he is most comfortable with. He is lucky to have you as his advocate. My best to you.

9

Hi Jake,

Welcome to the scary world of AVMs, and this support group. None of us here are technical folks, so the very thorough description you gave probably won't generate specific responses. Some may recognize some of the terms and have responses based on their experiences.

I'm not familiar with NY, but I do know that Mass General in Boston has a lot of experience with AVMs. I'm sure places in NY do as well. Best case on whoever you select needs to be a team, that includes neurologists, neurosurgeons, radiologists, and other specialties. They can review your Son's case and recommend the best course of treatment.

Armed with more options, you Son will have to decide what course of treatment, including no treatment, seems the best fit for him. AVMs are all unique, and their location, size, and structure make any "standard" method impossible.

Best wishes, and feel free to ask any questions here. You can also use the search function to read specific posts based on your search terms. Lots of fine folks here.

Ron, KS

10

Hi Jake,

I'm confused, is the AVM high flow or not? The jargon is unclear to me. If it is then it's important to seriously consider getting it treated and the neurosurgeons will make that clear to your son. If it is not, then he may have a point about waiting.

I have a somewhat similar situation with 2 arteries feeding a grade 2 AVM (similar in size to your son's) in my left parietal lobe. I was diagnosed about 6 weeks ago. And, I also teach college and I'm in a PhD program and have a career based on my intellectual capabilities--it's really the only thing I'm good at ;) So that's a real risk in either case, with the treatment or with a bleed.

I'm classified as "pre-bleed", however, I have unbearable head and neck aches and some other cognitive oddities going on so I suspect that I've had micro bleeds that haven't been caught on film.

I am scheduled to have an embolization in 10 days.
And, it's a high risk surgery.

So, as I'm sure you know, everyone has to take their own journey with a diagnosis like this and make choices as best they can by what they think is right for them.

For me, I'm in a lot of pain and the implications of the escalating pain scare me more than the surgery. So that makes my decision easier.

Best wishes to you both,
gaahla

11

Hi Gaahla,

Thank you for the information and best wishes. I listed exactly what is on the written reports to date. At the present time we seem to be a hostage to the Insurance Company waiting for approvals. In addition my son is in the middle of giving Finals and is waiting until school ends to pursue this further which has me concerned. I have the names of two doctors at the big hospitals in NYC and I am trying to get him to go there for a more detailed diagnosis.

We need to get a plan together and move forward with this...

Jake

12

Hi Wendy T.

I hope he does. With all I have been reading it really becomes difficult to absorb and process all the information to help in a decision process.

Jake

13

Hi Ron,

Thank you for your post. That is why I put up the exact diagnosis up in hopes of someone finding a nugget of information that may be the same with them and provide back some additional thoughts. I did see where Mass General is a very good hospital and hope NYC Hospitals are as well. They are close to me and should be a good starting point.

Jake

14

Dear Jake,

Welcome to the site, and I am sorry your son and your family are being confronted with an AVM. It must be terrifying to have the possibility of losing everything one has at such a prime age.

I have found, talking to a few people, that it seems to be more difficult for people to want to take action against AVMs when they did not find out because of a dramatic action caused by them.
One of the people I met here was (is?) disinclined to take action, because she has no symptoms, so it is hard for her to even remember sometimes that she had a life threatening situation in her brain. She is also young, and wants to enjoy life (I was 22 too, but I've not been as healthy as a "normal person," psychologically or physically for a long time).

In my case, I was alerted of the problem first by a seizure, and then my body became weaker and weaker to the point that going to field placement to teach for the morning, then going to classes, then coming back to my 3 hour classes, then doing homework was too much for my body and brain, and I had 2 more seizures within a few months of each other.

I could physically feel the toll the AVMs (though we did not know I had 3 instead of 1 until they opened me up) had on me, so it was not as difficult for me to make a possibly life altering choice. My fear was my personality changing (because of the location of the AVM), as well as not being able to do what I have been able to do my whole life, but the side effects from the surgery were very mild.

Most of all, I do not have to go through every day, wondering if I am going to be in the emergency room this evening with a seizure or bleeding resulting from hitting my head during a seizure, or if I am going to be dead tomorrow because of a bleeding.

But I understand that it is a tough decision to make, on his behalf, and yours, too. But ultimately, it is his decision, and you have to be patient because... It is scary.
If I didn't feel the toll of the AVM and my body "collapsing" every day as I trudged along, I don't know if I would have been able to make a decision. My AVM was officially diagnosed in June of last year, and a neurosurgeon offered to do the surgery by end of August. I wasn't ready for that. Instead, I took it in December, and going through that semester allowed me to realize that yes, I really really need this surgery and to get rid of this thing that is making my life so miserable, and my family and friends' lives difficult, too (I constantly needed to be watched and make sure I wasn't going to drop down and have a seizure- all three times I had a seizure, I had it in my apartment or university, not at home).

I hope your doctor has given you and your son tips on how to prevent bleedings/seizures as much as possible, and I hope your insurance will be helpful! Best of luck to your son.

15

Thank you Hiro for your thoughts...

Yes I do know that it is his decision and its a very scary one. When he is ready to make it I will have hoped to provide him with as much information as possible from this site as well as others so that he can make a decision based of facts and not so much fear of the unknown.
7 years ago I had a massive heart attack and died for 5 minutes right in front of his eyes and my wife. He has gone through a lot in a short period of time and hopefully with our support and medical intervention we will get through this too.

You mentioned something about what he should be doing to avoid bleeds and possible seizures, what are some of these things?

Thanks
Jake

16

Sure Jake,
Just letting you know that giving us doctor's reports isn't always going to get you the best advice from a community of patients. We're not doctors so many of us don't understand all the jargon...most of us speak in a more common vernacular, which is not a neurosurgeon's specialized language. I was just trying to help you to communicate with the community that you've asked for help.
Especially because if you do know whether or not your son's AVM is high flow or not, makes a big difference. That's was my point.

Good luck.

17

Hi Jake,
I am very sorry that your son and your family is being faced with this. I will tell you that I would have given anything to have found out that my 7 year old daughter had her AVM before it bled. Unfortunately we didn't know anything about it until she collapsed at school. We nearly lost her. She spent 74 days in the PICU and 30 days in Peds Rehab at the hospital. She is still recovering and we are thankful for how much she has improved so far. It seems alot of times if you are lucky enough to find out about it without a bleed and it can be treated the recovery is easier. Please share what everyone has said with your son and give him a little time to absorb everything and hopefully he will see that it needs to be treated. He really doesn't want it to get to the point where it HAS to be treated because unfortunately it doen't always turn out good. Prayers for all of you!

18

Hi krd,

Thank you for your reply. The difficult part of this is seeing all the outcomes where people have lost sight, physical abilities, memory and the like from treatment of the AVM.
Are there stories out there where it is treated with no additional complications and the person lives their life with no issues? He and I can't seem to find them on the net...
Makes the decision process much more difficult...

Jake

19

Jake,

I'm a teacher. I was diagnosed with a 6 cm AVM in my right parietal lobe in April 2011. I also a Blue Cross Blue Shield PPO. Even though my surgeon isn't in my network, I am still able to see him. He accepts my inusurance for most costs. For some things that the insurance doesn't cover, I pay out of pocket.

Your son should realize just how lucky he is that he fund the AVM prior to a bleed.

Luckily, I've been able to do most of my treatment during school breaks. I had Gamma Knife radiation in June 2011. They discovered an aneurysms in the MRI & angiogram they did that day. In July 2011, I had a craniotomy to clip the aneurysm. I am very lucky that we did--a secon aneurysm that was close to rupturing had been "hiding" in the scans, and they were able to clip it, too. My surgeon wanted me to have at least 4 weeks before returning to work, and I had 6 weeks before the new school year. The first week back WAS exhausting, but I made it. I had my 2nd GK right before school let out for Christmas Break. I just had my 3rd GK last week (school here has been out since June 1).

I will say that, especially during the beginning of the school year, I was very tired & spent most of the weekend sleeping & resting up for the next week.

angela

20

Hi A. Collins

Thanks for your information. So you had a Craniotomy followed by GK procedures. Have you had any side effects, loss of ability or any problems at all except for being tired? So many posts I have read, the people end up going through so much during the recovery stage. They go through all sorts of complications. I am sure he thinks this will happen to him as well.
Hopefully not everyone has problems and things go according to plan.

Thanks
Jake