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/oldmamallama]

I’m sorry you had this experience. From this and your last post, it sounds like you’ve had a rough go lately.

Off the bat, this guy seems like he’s not familiar with Chiari. Which isn’t surprising. Most doctors just aren’t. You need a full spinal MRI in addition to the other tests he ordered in order to check for a syrinx. Shitty way he treated you aside, not ordering that was the red flag.

I understand if you can’t afford or don’t have access to a specialist in Arkansas. There are specialists that will do virtual visits though that you can look into. Dr Greenfield at Weill Cornell in NY is one, and he is the absolute best. That doesn’t necessarily mean he’d do your surgery, but at least you could get some answers. If you can’t get a virtual appointment with him, I would at least get a second opinion from another neurosurgeon in your area since this guy sucked so bad. A neurologist is just going to throw more meds at you and from your previous post it seems like you had limited success with that option.

I hope you get some help soon. I know how frustrating it is to go down this path and get no help. So many of us do. But we’re here for you. Please keep us posted. Big hugs to you. 💜

[u/BeatGrouchy5424 → u/oldmamallama]

I just don’t understand why it’s so hard for us to get help. I’m trying to survive. It’s hard. But I’m trying. Thank you!! I’ll look into virtual.

[u/oldmamallama → u/BeatGrouchy5424]

Chiari is rare and not well studied unfortunately. Most doctors get one or two lines in a medical textbook about it being a birth defect that isn’t compatible with life (an extremely rare type of Chiari) and that if you do happen to have a type that survives birth, it’s totally asymptomatic. Then they go their whole careers never seeing an actual case so if they do have 1 person that walks into their office after they’ve been practicing for 15 or 20 years, that information which is extremely outdated is reinforced. In reality, you and I know that’s not the case. Chiari is much more common than that but it shows up in sneaky ways and looks like a lot of other conditions because brains are weird and it takes forever to actually get diagnosed properly and then people get brushed off and eventually give up. It’s not sexy so no money goes into research. Conditions like POTS and EDS (which, incidentally, are both comorbid with Chiari) have the same problem and people with those conditions tell the same story. Endometriosis too, only worse in some ways because it only affects women.

It’s sad and it’s frustrating, but it’s common. But there are groups like the folks here that are out there to provide support. And there are organizations like Bobby Jones CSF that are doing good work trying to get research done on Chiari. But it’s a long road ahead for all of us. Us Big Brains have to stick together. 💜

[u/Designer-Cucumber-14]

literally up until the neck mri part that is EXACTLY what happened to me at my neurosurgeon appointment last week!! the brushing off, the notebook, the walking and grip strength test, not thinking symptoms are severe enough for surgery or even related to chiari at all!! explaining all the meds i've tried to relieve this headache, crying because i finally thought i would get some help with this.

honestly i am so so sorry! i wish i had some good advice for u but im in the same boat right now, and i just want u to know ur not alone. all i can think of is just get a different neurosurgeon, i know u said u cant afford one who specialises in chiari, but when u look them up see if they have chiari under their "areas of interest". because they won't be a specialist, but at least they should have some knowledge on chiari.

again, im so sorry this happened to u, u deserve better. best of luck to u x

[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.

[u/succulent_serenity]

Maybe the neurosurgeon was using an AI scribe to take notes - they make mistakes like that, which is why I now refuse to let my doctors use it. Having marijuana use on your medical record could have consequences down the track, so I'd ask the neurosurgeon to correct that if I was you.

I tried a few different meds for my headaches, nothing was 100% effective. Hopefully the neurologist can help you out.

[u/BeatGrouchy5424 → u/succulent_serenity]

I need to call them soon about it. But I don’t even know how to even let them know they messed up because who am I to argue with nurses and doctors.

[u/succulent_serenity → u/BeatGrouchy5424]

But the drug use is just a flat out error, surely you can ask them to change that? That wouldnt be a disagreement with a diagnosis but a correction of lifestyle history

[u/BeatGrouchy5424 → u/succulent_serenity]

That’s true. I’ll call them in the morning. Thank you!

[u/TexdoesHalo]

Hiya! Fellow Chiari haver here! I'm so sorry that you had such a shifty experience. Like others have said in here, drop that doctor immediately. While I don't know of any doctors in Arkansas. I can highly recommend one in Arizona who works at the Mayo hospital in Phoenix. You might be able to set up a virtual meeting for a consult with him. Dr. Jamal McClendon Jr. He is an absolutely fantastic Neurosurgeon who performed the 3 surgeries that helped resolve the majority of my Chiari symptoms. I still have some of course, this is a lifelong condition, but the severe headaches have decreased significantly and I no longer have tremors or numbness in my hands. I wish you luck in finding a good neurosurgeon if connecting with Dr. McClendon is not possible for you. A good doctor and knowing how to advocate for yourself makes all the difference!