Where do I start?

Welcome Greetings and Introductions
1

Hello!

My Name is Kelli, I'm 35, and I'm still pretty new to this whole "Chronic Illness" thing.

See, a year ago, I did Crossfit, volunteered with a local dog rescue group, played dress-up at renaissance faires and enjoyed hiking and riding motorcycles. I'd get headaches and sore joints, but I attributed it to working too hard at the gym and dehydration.

And then, Last June I was diagnosed with rheumatoid arthritis.

My life pretty much ground to a halt while I sorted out my meds and limited joint damage.

And in January 2016, the bangers started - that's what I call my really bad, crippling headaches. The ones that knock you to the floor and don't let go until you've spent a day in bed. I was also vomiting every other day for weeks. I lost 10 lbs in a month.

I was eager to get my life back on track so I pounced on this quickly. I researched intently, trying not to scare myself. My rheumatologist said it was out of her field of study. The Urgent Care doctor believed it was med side effects. My first GP ( a cardiac doctor in town) believed throwing propranolol at me would help. Nothing ever did.

I ended up with new insurance, and new doctors.
They took me at face value, scheduled me with a neurologist who changed my meds and scheduled me for an MRI - just in case.

2 weeks ago on May 10th I had the MRI.
The next day the Neurologist told me the diagnosis- Chiari Malformation I.
I was scheduled to a neurosurgeon the next week- last Thursday.

With a herniation at almost 7mm, I'm a candidate for surgery. However, we're running another MRI of my spine for syrinx and CSF leaks, and Xrays of my neck to determine if my RA has any blame in this. And that's where I am.

Part of me is trying to live with the bad coordination, vertigo, unsteady hands and constant head pressure, trying to remind myself that my bad days could be worse. And part of me wants the surgery yesterday, because I'm not living anymore, I'm just existing.

And that's where I am right now.

2

Hello there Kelli, this is all pretty frightening for you but it sounds as though you have a thorough neuro team who are looking for the complications which make surgery necessary. You'll see reading our members stories and discussions that surgery is not a "fix and forget" solution because not everyone has relief from their symptoms so please don't rush or be rushed in to surgery unless absolutely necessary and all medical treatment avenues have been explored first. I know it's hard to take a step back when you simply feel so grotty day-in and day-out.

If you haven't already discovered it do check out our section Chiari Info for Members which has lots of helpful information and links.

3

I've got my Spine MRI booked for later today ( otherwise I'd have to wait for 2 more weeks) so that's good.

And I'm a little eager to get the surgery because I know I could be loads worse, and I want to stop it before it gets any further.

4

Once u get confirmation via MRI, it’s such a relief. Make sure to get a Cine MRI!! I went through months of “not knowing what is wrong with me” and finally after every other test my neurologist referred me for a Cine MRI. Results: total obstruction on right side. So next: surgery. The docs seem pretty happy to see us repeatedly and order billions of tests to rule out other stuff when they could’ve just gone straight to the Cine MRI: it is a test that shows whether there is cerebrospinal fluid flow from the brain to the spinal cord. If it’s blocked you could have a wide array of symptoms!