Hello, this is my first post! Last December (the day after Christmas 
) I crashed my car on the highway due to having a seizure behind the wheel. I was taken to the ER and stayed in the hospital for a few days, where I was diagnosed with AVM. This happened at the worst possible time, right before my 23rd birthday which is when I got kicked off of my parents insurance. After a long and very frustrating process due to communication issues with my employer as well as the insurance companies, I was finally able to get insured starting in May. But my primary care dr. will not prescribe me any more medication until I see a neurologist. And since I had a change in insurance, I can no longer visit my previous neurologist. I found a new one, but they cannot see me until December 1st, almost a full year after the incident. I’m scared, I don’t know much about my AVM, I just know that I have one. I know that the medication I was prescribed at my hospital stay helped with my symptoms, so I’m terrified of having more seizures (or something even worse) now that I’m off of them. I’ve basically had no advice on this other than “see a neurologist”, so I really don’t know what to do in the meantime.
I guess I’m just posting this to see if anyone else had a similar experience, any advice, or even just words of encouragement. I’ve honestly been feeling very helpless and lonely throughout this process, since no one I know has even heard of AVM before and my primary care dr hasn’t been much help.
Welcome to AVM survivors! It’s good to have you join us and I hope we can encourage you along the way. It is pretty normal to have a primary care doctor who doesn’t know about these very much and my experience is that some will find you fascinating and motivating but some will find you an unknown that they just hand off to the hospital specialists.
I would say that a neurologist is someone who will look at your Keppra medication and give you advice on continuing that (normally I would expect you to be staying on it, so I do think if you can find an alternate neurologist to see sooner rather than later, that might be a good idea).
The other main role in an AVM treatment is that of a neurosurgeon. Usually, I’d expect a neurosurgeon to be the person who you would engage with to understand the scope and risks associated with your AVM. Honestly, you could do with understanding any reports from your incident at Christmas; otherwise a neurosurgeon may be the person to engage with. I’m in the UK where the primary care doctor would do the relevant referrals but it seems to be much more on the patient’s shoulders to find appropriate care in the US.
What do you know about AVMs so far and what do you know about your AVM?
Welcome!
Richard
Hey Scared23,
Welcome to Ben’s Friends.
I must agree with the information provided by DickD. I’m in Australia, where we have universal healthcare, which is something like the original ‘Obamacare’ plan. In very basic terms, if you need treatment here, you can get it in the public system at minimal to no cost.
As DickD states “…pretty normal to have a primary care doctor who doesn’t know about these very much…” and this can be why some pcp’s can be reluctant to provide medications. If they give out a med which alters your blood pressure this may cause issues with your AVM, this can be why they want a neuro’s assessment.
As I say, I’m in Australia, so my knowledge of how the U.S. medical systems work (or don’t work) is very limited, because of this I’d recommend you make contact with an organisation who works within these systems. Although it may technically not be considered a brain injury, it is brain related and for this reason I’d advise you to make contact with someone like Brain Injury Association of America | BIAA (biausa.org) They may say they are not the correct organization for your specific needs, but if this is the case they should know who is the relevant organization and how to contact them. Now, because you had a seizure other organizations that maybe of assistance are Epilepsy Foundation #1 trusted site for epilepsy and seizure news and Home - National Association of Epilepsy Centers (naec-epilepsy.org)
All of those organisations will have their own contacts and networks of other agencies, so linking in with them can open up other options for both treatment and medications.
Hope it helps
Merl from the Modsupport Team
Dear s23, I can understand that you are scared and feeling lonely. The waiting for help or at least for some kind of professional information on your AVM is nerve-racking. The shock of the fist diagnosis is difficult enough to handle, and having to live in oblivion for almost a year seems unbearable to me. It’s a shame how healthcare in your country is treating you. I hope you will get some good advice from the contacts that Merl sent to you.
I don’t know if it helps when I tell you about our son’s journey with his AVM. He was diagnosed after an epileptic seizure at the age of 21. Very different from you, he had a proper examination (angiogram) within a week. But then, the long waiting began. Doctors recommended not to treat the AVM because of the high risks that come with surgery. They advised “to wait and monitor” and told our son to forget about the AVM as well as possible and to go on with life. That was a difficult task. Two years later, our son had a minor bleeding, and things changed. Treatment began. He went through five embolizations and a craniotomy. Four years after his first seizures he was AVM free. And he felt really free for the first time in a very long time.
This was almost a year ago. Our son is doing fine. Things are not perfect. Healing, physically and metally, takes a long time. We are still healing as a family. He still has to take anti-seizure medicin, and he has some minor troubles with perception and concentration which can be frustrating at times.
What I would like to tell you with this story: Dealing with AVM takes a lot of patience. A lot! And sometimes it might feel unbearable, with no end in sight. It’s a long and difficult journey, plastered with lots of fear and uncertainty. But it can turn out well. Medicin is making huge progress in this field. With every successful treatment they are getting better. So keep up hope, scared 23! Make yourself to “hope 23”. And use the waiting to find the best of the best treatment that is possible in your situation.
I wish you all the best.
Love sitta
I couldn’t agree more with Dick D. Get yourself a neurosurgeon ASAP. They lay out all the options for treatment, risks and rewards. Sitting and waiting for a year is nuts. After discovering my AVM at the age of 65, after my first seizure, I was monitored by my neurosurgeon for a year, until I had my second seizure. After that, he got me on Keppra. You should be nearing your 6 month point were you can start driving again. But you may feel more comfortable with that decision if you meet with a neurosurgeon first.
I am very sorry this happened to you at 23. I know at 60 with no prior medical problems I felt like a 23 year old, shocked and did not know what to do.
My thoughts are the following.
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If you have a primary care physician that you trust and respect (if you don’t find one) have your primary help to get you in to see a neurologist asap. They can help speed up the process instead of you calling and making appt. With the pandemic appts are backed up.
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Once you see a neurologist he will most like do a contrast MRI and determine your next steps.
You are not alone, all of us that find out we have brain AVM’s are shocked and upset. I had brain radiation and hoping that it works.
Stay positive and don’t stop until you get into see a neurologist.
Hello @scared23
Welcome to the community. I am sorry that you have been going through this experience, rest assure we all have gone through a similar path, and we are many in this community worldwide. I live and work in Guatemala and had to travel to the States for treatment. 3 weeks ago, today I had a Craniotomy on my cerebellum to remove my Grade 2 AVM, @ Cleveland Clinic Ohio. I am still recovering from surgery, a lot of balance issues and have some more weeks to go.
I understand you had a seizure, so your AVM probably has not bled? Mine did not bleed either, and after the angiogram surgery was recommended. I am 44 years old, in good shape and hope to recover soon.
It really is drag what you mention about the insurance, the good thing is that you have it now and in some months it will be active. In the meantime another thing you could do, but ask if it doesn’t mess with your insurance going forward, is to make an appointment with a Neurosurgeon and pay out of pocket. I guess $ 200 for the appointment, it could give you some information and help you stay comber.
Sending you good vibes and wishes!
Best
Francisco
Long waits to get into neuro is a definite problem in the US. I have gotten into interventional radiology faster and their NPs can Rx meds until your neuro apt. Centers are easier than individual practices. Not sure where you are at but i have had sucess getting apts with Yakes in Colorado, Tampa General and Mayo. Right now they just send MRI and Tx protocols to my primary to order locally and then they follow me. I took me 4 primary docs before i found one who was willing to do this. Best of luck. I was diagnosed 30 years ago and there have been obstacles to getting treatment but it eventually works out.
Well I don’t no if this is going to help but just for a smile I sort of no the bad luck. I had my AVM rupture 2 weeks after my 10th birthday. Luckily you have just had a seizure and not a bleed. This has led to you knowing that you have an AVM. Its going to be a ruff ride to get through this. Keep us all posted on how things are going. God bless
Welcome to the group @scared23 I see you are in Virginia my best friend lives there I am in Northern Califonira near Stanford.
Have you tried Georgetown for a new neuro? At least with Georgetown being a teaching hospital you might have a higher success rate of seeing someone good sooner.
December is way too long to wait to get your meds. I would also suggest calling your insurance sometimes they know who is accepting new clients.
Does your primary know that you cant get in with the new neuro until Dec and still wont prescribe the meds?
I thnk with Covid at least here in the Bay Area many drs ended up retiring early so there is a lack of drs here too.
Hugs Angela
Hi Scared, Welcome. Thanks for sharing. As far as monitoring the meds, my nurse practitioner for my neuro can do this most of the time. That way you wouldn’t have to wait so long or risk having a seizure. Best wishes, Greg