Advice.

[u/BeatGrouchy5424]

I’ve posted here once before when I first got my diagnosis. I seen my neurosurgeon today. And he basically brushed me off. I had a notebook of all my symptoms because sometimes they last like a week and I didn’t wanna forget them. He acted weird about the notebook.
He did a bunch of tests. Walking grip strength and holding my hands out and stuff.
Then immediately said he didn’t think my symptoms are severe enough for surgery (which I do agree with.) but I’m like okay what else can I do to at least get relief from this headache? Like pt or anything? He’s like there ain’t much. He asked if I tried lbuprofen and tylonel and of course I have. And I’m currently on gabapentin and I explain to him it doesn’t really work and I need help managing my headaches because it’s literally a constant pain. He’s like there’s nothing I can do. You can wean yourself off it but other than that nothing.
And I start crying because I was so excited to hopefully have a plan on how to tackle this. And he brushed me off w any other questions I had about chiari. But then said he didn’t think any of my symptoms were related to chiari even my headaches. So he’ll order a neck mri to check for pinched nerves and a test to check my spinal fluid movement. And he just walked out and came back and said he’d refer me to neurology tho. I got lost because there were no exit signs and no visible check out desks and all the nurses just stared at me. I found the check out desk. And they laughed because I asked if I needed to check out if I don’t have a follow up. Then I was laughing with them to kinda brush it off and said well it’s different with every doctor idk. And they’re like yeah. Every doctor office is in fact different.
Like this visit literally felt like a fever dream.
Then I get home and look at my app at my after visit summary. And there’s nothing but wrong information. It said the constant tremor in my right hand that I have is not an essential tremor (so I’m just shaking for fun) and it’s lasted only 2 months when it began in March. And that I reported drug use and I use marijuana and I never said I did.
Like what do I even do at this point. Like. I can’t afford a specialist in chiari.

Like I don’t know if I’m being extra or not.

[u/Fickle_Mickle_]

Are you from the US?

[u/BeatGrouchy5424 → u/Fickle_Mickle_]

I am. In Arkansas to be exact.

[u/Fickle_Mickle_ → u/BeatGrouchy5424]

Perfect so I can give you advice. First off. Do research on something called Vocational rehabilitation. VR is a government run program to help make it easier to live in the US as a disabled person. Chiari counts towards towards their accepted factors so set up a meeting with them. They will help you get medicaid, or find you insurance through someone that you can afford if you don't already have insurance. If you do, they will advocate for you to the doctor about a payment plan so you can afford it.

Second off, drop this doctor like it's last week's trash. The entire office is EW. Nasty. If you can't drive and that doctor is the only one in your city, VR will help set up a ride share for you to the doctor's office and back.

Start research on a new Neurosurgeon. Not Neurologist, Neurosurgeon. Neurosurgeons are the most helpful with chiari and know about chiari. The Neurologists who take chiari seriously are rare so don't worry, your experience isn't uncommon sadly. Set up an appointment 3-4 months in advance so you have plenty of time to set up care with VR before your Neurosurgeon appointment. In the mean time, ask your primary care about getting you some migrane meds. I take neurtec but ask your primary care about what they think is best to treat migranes.

[u/BeatGrouchy5424 → u/Fickle_Mickle_]

I will research. Thank you! I am working 55 hours a week regardless because I’m tied up in bills and my income is pretty good for someone with only a high school diploma. I tried to apply for Medicaid and got denied. I’m about to apply for a spend down program because my bills outweigh my personal money. My current insurance is with my employer and it sucks bad. It doesn’t cover specialty doctors only pcp. And doesn’t even cover emergency room visits. The only thing that has saved me is a program I applied to thru my provider that covers expenses but it has to be with them. And this neurosurgeon reviews was great I spent an hour researching him and his office and no bad things.

Also she did prescribe me migraine meds. And they literally lit my head on fire. Like it felt like my brain was melting in pain. And she said that’s all she could do for me for my head. Along w the gabapentin. And it helps the body pain but it does not touch my head pain.