Something possibly good but God needs to make a way. :(

So in my mad quest for a referral to see the neurosurgeons in my state, I got to actually talk to my rheumatologist. God bless her she actually listens! A few years back, she had diagnosed me with possible vasculitis, particularly of the skin.

So, I explained to her my symptoms as they wanted to know what Dr I wanted to see in New Orleans. She agreed I need to be seen but when I told her my last scans, and the one showing an “enlarged vein under my eardum” fromy ENT (he showed me the difference between my right and left veins it was like night and day. As if the large one on the affected side of hearing my own heart beat and the headaches were drawn with a thick permanent marker and the one on the right with no symptoms were drawn with a thin pencil! ) …she said since it has been 5 years, I’ll need to have the CT with contrast and an angiogram done. The thing is being I have no health insurance I don’t know how I’ll go about doing this but I feel it has to be done.

I have looked extensively into medicaid or reduced cost plans. There are none, as a family we do not qualify. And I’m not even working full time. So I really don’t know what to do. She’s sending the orders for kidney function blood work to be done before the scan and angiogram, but sending them to me in the mail so I can price around.

I am wondering if the teaching hospitals even do this procedure and…is it even safe to do there. The nurse told me she needed this done on her back and just the contrast scan was a down payment of 1200 WITH having insurance. I only have a bit of money saved up. Times have been hard. Yet I qualify for absolutely nothing in my state. I guess I should price around once I receive the orders in the mail and try to proceed from there.

Note she isn’t going to diagnose the AVM but just wants the test done so I can get in to see someone other wise she’s afraid they’ll just keep putting me off since I won’t be seen as priority with nothing showing up major.

Which state are you in? Some teaching hospitals have charity care, others have huge discounts for patients who have no medical insurance and will let you set up a payment plan. Never hurts to ask about their options.

Teaching hospitals can be quite good, I just had a CT-angiogram with contrast in one. Several ‘about to graduate’ students as well as an experienced doctor did the procedure. They were good, gentle, understanding (my first ever hospitalization) and the bill wasn’t quite as high as other places near me had I had to pay out of pocket. I also just had an embolization procedure and a craniotomy at that same teaching hospital with great results.

I wish you great luck. Please let us know how it goes for you. We care.

Thank you so much @lorietnut. I’m in Louisiana a poor state. I do belive we have a teaching hospital I’ll look into it for sure. It’s just added stress on me which I clearly don’t need when my husband who in an ideal world would be supportive does not want to spend any money at all towards this for me. Sees it as not serious since it hasn’t ruptured. I don’t think he even believes anything is wrong yet he heard the sound just by putting his ear to my head!!

I’m eased knowing I have sites like this out there.

All in my angio, coiling, etc cost about $160,000- I think the simple answer is to just get health insurance. Open enrollment is from 11/1-12/31, where the policy goes into effect on 1/1/18. Good luck!

Wow. Well, we can’t afford it. We had it. Through healthcare.gov. I can’t pay 1300 a month for it with no job. And that’s what they charge for someone with a family of 3 making 50 grand a year and the other spouse only working a temp part time job in my state.

I am so sorry you’re going through this and can’t receive quality health care. No one living in the richest country in the world should have to go without health care. At the very least write a quick note to your congressman. I’m Canadian and my daughter had a completely unforeseen AVM rupture in January. She was hospitalized till August. She had a craniotomy, tracheostomy, Gtube put in, countless MRIs, an angiogram and embolization procedure, amazing rehab…
We paid $0. No bill, ever.
The only thing we’ve had to pay for now that she’s home is 25% of the cost of her wheelchair (government pays 75%) and a commode for our bathroom.

Even the school system is buying her a walker for use at school. I know a lot of crazy myths swirl about concerning single pay universal health care, but my daughter’s care is a testament to how great it is. Our taxes might be a bit higher than the US but it’s totally worth it.

I pray you find the means to have your situation looked into. You do not want to suffer a rupture. It’s so awful.

@AllieG. Wow, yeah it’s pretty insane that in the US there are so many like me who have to debate every time to even go to the Dr. Or not when something is wrong and you also have NO IDEA what you will be billed at any time for any service, too. Even with insurance. Pretty pathetic. I’d be all for a single payer system. And I am in one of the absolute poorest states in the US, too. Louisiana. Our education is ranked dead last. I’ve got some funds in my lousy 8 years of retirement saved up so I may just have to crack the ONLY nest egg I’ll have abs pay for the CTA out of pocket…

$160,000 is a ridiculous amount of money. I asked about being seen privately in the UK and was quoted “just” £12,000. It might even be worth travelling to get treatment at that rate. That was literally just for the embo + 2 days in hospital. A subsequent check angio might cost a similar amount but I didn’t ask. I just hung on for free treatment on the National Health Service.

Update : I talked to the charity hospital here, they had threatened to close it down but it’s still open and they do the CTAs here and if you don’t qualify for their free health care aid programs they’ll write off a good portion of your bill. It isn’t as far away from me as the teaching hospital, and, the blood work I need I wad quoted a price of 190.00 for out of pocket. Not bad.

I almost had enough saved to get the CTA at the teaching hospital 4 hours away from me, but thinking it may just be cheaper and closer to do it here at the charity hospital. I will keep everyone updated. Thank God my Dr. Had ordering privileges here.

I see there is a difference or am I reading it right , between a CTA (my orders say CT scan angiogram) and angiography. ? When I looked up how the procedure is done, it only mentions contrast dye in your arm or leg to view the blood vessels, etc…that sound just like a regular CT with contrast, Ie, no mention of a catheter inserted. The only thing I’m worried about now is complications from the preceded and at a charity hospital!

I guess the “angiogram” bit is the contrast and CT is computerised tomography, which is the scanning method. My doc used x-rays I think, rather than CT. I think CT gives a 3D image which is very posh.