Long wait with no meds or treatment, I’m scared

Hello, this is my first post! Last December (the day after Christmas :frowning: ) 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.

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@scared23

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

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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

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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