How do I get someone to hear me?

I am in pain every day. I do not qualify for state assistance because they claim my AVM is not life threatening. I cannot afford insurance, and even if I could they turn me down because of my preexisting condition? How to people afford to be treated for this? How can I get someone to help me get treatment? How long will I live without treatment? Where do I turn? So lost............

If you don't qualify for assistance or for insurance on the open market, you can get into the state’s Pre-Existing Condition Insurance Plan. Here's a link to California's plan:

Other people on here have had experience with appealing a Medicaid denial, or with getting a lawyer to help them. If those routes don't work out, it's worth thinking about taking out a loan to help you pay the premiums for the pre-existing condition insurance plan.

I hope something works out for you. There are many people who have to live with untreated AVMs for various reasons, so it can be done, but the worry can be a lot to live with.

Hi Whitney. Welcome to the site. I am sorry about the pain. Not sure about how to go appealing a decision from the state. Your local congressman might have some ideas. As far as living with an AVM…we have some members on the inoperable AVM sub-group who have lived with their AVMs for as long as you have been alive. Not all of them bleed and even if it does…you can survive. Feel free to check out my profile page.
I just reposted this link last night. Please do not be put off by the words low income…it has a ton of good links on it…
You and your husband will be in my prayers.

Hi Whitney. I empathise with you problem. I live with constant pain too. I'm on dilaudid 4x a day for it. Do you have a Dr.s statement about you condition? If so, perhaps you can give that to the Assisitance office and that may be enough. Also, see if they have an advocate that you can talk too. I live in Pa so I don't know the rules in your state. However, since I had no income, I qualified for medicaid until my disability was aproved. Now, I did have few doctor's statements to give them about my condition. Which I'm sure helped.



Thank you for your helpful words of wisdom and your helpful link...I have been offered the PCIP, but if I am paying out of pocket, I want to know that I am able to see a specialist so that I have a choice of radiation or surgery, I have never had a medical problem such as this, no broken bones, and never been in surgery. I am sure you can see how surgery is WAY in the back of my mind right now. Thank you...beginning to love this website!

Hi Barbara,

I am not afraid to say that I am low income. I have not worked in over a year because the stress, anxiety, and pain is too much to handle without the comfort of my husband to aid me. I have already experienced a bleed, and calcification. I do not know when I bled, but the Neurologists had told me it was old blood for sure. I have had a few follow up MRI's, and no growth or bleeding has occurred since. Thank you for your prayers, I will take them gracefully.

What is Dilaudid? If you don't mind me asking. I am not trying to pry, but I like to know what possible medications I should look out for, or some I should request as far as pain. I understand everyone is different, but it is good to ask. I have had my disability case for a year and a half, and it looks like 6 months or so I should get a hearing. I live in the state of California, and they are tight wads. I do not know how else to explain it. They denied me medi-cal, which is out state funded insurance through welfare because "I have the function of my arms and legs." Little do they know, little or no use of my hands and feet, and they go numb; quite often. I also gave them copies of some medical paperwork, and they told me to file for disability. I am new at all of this, and I didn't expect it to take this long. My disability lawyers dropped me after over a year of helping me because they felt I would lose my case. I will be getting some form of medical within the next two weeks, and get something done. Even if it is a statement that I need specifying my case and my need for disability, then I can take care of this from there. Thank you for your help, you are all wonderful!

Hi Whitney,
Everyone's offered great suggestions & another one I'd add is also to write your local media.
Also consider such as this AVM pts. friends/family did.
I hope you'll find the right resources to help you get you treated.
Best wishes,

Hi Whitney - I've heard that shouting loud isn't too effective, so you probably want to avoid that approach.

Although that approach seems to be what funding assistance can lead to, you get more flies with honey than vinegar...not saying that vinegar has plenty of good uses.


Thank you, I'm not much of a shouter lol it is more pain to shout than effective. Vinegar has some amazing uses tough.

Patti G,

Thank you for the helpful hints, I am getting so many tips off of this website it is amazing. I have written to my local paper. I wrote to an editor and he picked up my story about a year ago. My husband and myself were on the front page with our story of trials and tribulations. I felt that my community failed me because I was not "sick enough" to their knowledge. I wanted to write to the paper so that someone would contact me with advice, but nothing happened because of it. I am working hard, and would love to open up a physical support group for men/women/children/teenagers with avm's. I think it would be great to host support meetings where we could lean on eachother.

Thank you

Hi Whitney. You can ask me anything you would like to. I'm happy to help or at least try to. :)
Dilaudid is a type of morphine. I'm on 2mg, 4x a day. It doesn't take all of the pain away but, it does help. When you do get Insurance... you may want to see a "pain management dr." for help. And ask them to give you an EMG. That checks the nerves in your hands and feet. When I had it done, the Dr. discovered that I have no reflexes in my left foot. Which verified my left leg going numb. He also discovered that I have carporal tunnel in both of my hands that I didn't even know I had. I was fine until I got ill. Go figure. :)
I hope this helps you.


Whitney, I would start with The Brain Injury groups in your area. AVM's by definition are aquired brain injuries so they will assist you n many ways. They are able to put you intouch with groups that can help you in many ways you never dreamed of. Also there is a Brain Injury Task force in Congress so maybe one of your congressmen are there.

Until Obama's law take hold which prevent denial based on preexisting conditions, your best bet is to work for a company that offers health insurance. Even if part-time. Sad but true.


I am on PCIP in California, it is really good insurance, it's a PPO so that automatically makes it better than MediCal. It is around $250/month, depending on your county, they have lowered the prices because they have gotten so many people signed up in the pool that it has driven prices down even after only 1 year of being in existence-- thank you, thank you, thank you "Obamacare"!! Seriously, check it out!!

Hey all,

Thank you everyone, the advice is more helpful than the state can offer. I appreciate it. I read up on PCIP, but it won't cover nearly what get med 360 can cover for 100 dollars cheaper. Get med360 is amazing because they take preexisting conditions. Anyone who doesn't have insurance, but has the money to afford 149.99 a month, I strongly suggest you take this nationwide insurance. You can go anywhere in the US with this medical, see specialist, 2 surgeries a year are covered, and anesthesia is covered. Doctor's visits are co-pay free for 6 visits, and it also is dental and vision. It is a great covereage!

Hello Whitney:

I don't know if you are from Texas, but if you are from here there is something call a "gold card". I think that if you go to "Google" and search for the "gold card" is going to appeared something.

Wow Ben,

Thank you for the advice. It just worries me because my great grandma had parkinson's, and my mom has a form of it as well. I just wanted to see if it was the avm or something I will always live with...Thank you for not considering my question too pry-ish. I thought it was an anti-seizure med. I will let you know when I am seen. I should get insurance TOMORROW woohoooo!

Thank you Enrique,

I actually live in the desert in California. Drove through Texas a couple of times, but that doesn't count lol. Thanks for the advice!