Getting Ready to Birth a Full-Grown Goddess From My Head?

It sure feels like it…

I will do this. I can do this. I can be strong and get things done that need to be done. For the last three months this has been my daily mantra almost constantly. Those still waiting for me to get my thank you gifts to them from my crowdsourcing project will tell you that I have not done so well with pushing myself to keep up. I’m truly sorry for the delays. I have hope that I will get to things this week, but I hadn’t really seen myself getting admitted for testing… So I’m accepting the fact that I may be out of commission for a while longer.

Those in my house will tell you that the dinners turned more and more towards processed food than from the vegetables and local meat that I’m so passionate about, because it seemed like I just couldn’t deal with cooking or housework anymore. Now, I go through phases, since I live with chronic illness. But as things started to pile up, I haven’t seemed able to mentally organize the clutter where I used to be able to.

I silently noted one day that I’d been an entire month, day-by-day passing, with a pressured headache. Now, I’ve had these headaches for years with less severity and for shorter spans of time. Decades even. And I was told my an optometrist that I had abnormal optic nerves that I should get looked into if I ever develop a pressured headache. There was a problem, I didn’t have insurance. The headaches at that point went away, and so I didn’t worry about it much.

But this round of headaches were different. They didn’t go away. I woke up most mornings with at least the pressure there, and I went to bed with a terrible stabbing feeling rattling throughout my entire head. If I lay down for a few hours, I get some relief, but sometimes not.

I knew I needed to go to the doctor about it. I mentioned it to my rheumatologist during the ridiculously long appointments that led me to an EDS-HM diagnosis, and I was told I should probably look into it. Then while in the middle of that, my mortal husband’s mother discovered she had cancer, leading us to make multiple trips to visit her while she was taking both chemo and radiation treatment. Then we realized that my husband also has EDS-HM, and we wound up having to look into his heart. And then he had to travel to present his research at a conference…

Let’s just say that my life has been a chaotic mess filled with doctors appointments, travel, and watching my 2-year-old.

I managed to go 3 months with a headache before getting in to talk to my doctor, who subsequently lectured me about my Advil usage to manage my joint pain and told me that my optic nerves were no big deal. I guess I didn’t do a very good job of explaining to her what was going on. She referred me to a neurologist anyway. I left the appointment feeling embarrassed and like a hypochondriac. I cried in frustration afterwards, and I’d been so quiet about what was going on that my mortal spouse didn’t understand why I was crying. I couldn’t explain; I couldn’t manage to find the words.

Neurology yielded a different result. The doctors I saw there recognized something was going on. I didn’t mention my optic nerve, because I was still feeling silly about that. I was told I needed to have it monitored and that it was likely nothing. A lot of people have abnormal optic nerves. Plus they’d decided to do an MRI and have a full eye exam to be on the safe side of what they thought were atypical migraines.

So on Friday, I went in for all the testing. The opthamologist told me that he didn’t see anything going on in my exam. I asked about my optic nerves then, because I’d started to really let it sink in that over the last few years I’d slowly been developing a lot of symptoms of a brain tumor.

(Have you ever noticed words out of place in my writing? Sentences not parsing correctly? Yeah, I haven’t always had that problem. Now it happens at a pace I inevitably miss something.  I’ve been told that may be permanent at this point.  Great.)

The opthamologist didn’t think he saw anything, but he went ahead and had them take pictures of my eyes. He was really busy. As we were sitting in the waiting room, my neurologist called, but since we were in the hospital I lost the signal. I was finally told I was free to go.

My neurologist called back as we were leaving to tell me my MRI results were back. She said it showed I have pseudotumor cerebri (an outdated term for intracranial hypertension). And then she asked if I’d be able to be admitted on Monday to the hospital to look into it more and get a spinal puncture to relieve the pressure.

I was in shock.

The opthamologist called back, very concerned, because he’d had a chance to look at the pictures after looking at my MRI. Sure enough, my left eye was showing optic nerve swelling indicative of pressure in my skull. I assured him that I was going to be admitted on Monday, because he really wanted me to come back and talk to him more. But by that point I’d been at the hospital throughout the day for almost 8 hours. I was done with it, since I knew what they’d found.

What is at risk here beyond my sanity? My vision. If I let this go and it gets worse, I could not only be dealing with my head constantly hurting and no medication working for it, but I could go blind. So we need to get it under control. Quickly as possible.

There’s a catch to the fact that I have intracranial pressure… I have Ehlers-Danlos Syndrome Hypermobility Type. That means that it’s possible that I have a brain malformation called Chiari Malformation that isn’t showing up on regular MRI, because the tissue that holds my neck together and brain in place could be so lax that it shifts to a normal position when I lay down. It explains why I feel so much better when I’m laying down. The problem with having this and possibly not knowing about it or other spinal conditions that go with all of this is doing a spinal puncture could make the entire situation worse instead of better.

It’s suggested that when looking for these things in people with EDS-HM, they perform an upright MRI instead of a normal one. So if anything points to Chiari beyond what is already there with the tests they are running, I will be requesting to travel the 2 hours to the next city over to get an upright MRI instead of getting the spinal puncture that would relieve this painful, awkward, and annoying pressure in my head.

Either way, with idiopathic intracranial hypertension or Chiari malformation, I may end up having to have surgery if drug treatment doesn’t work. And either way, if that happens, I’m going to have to find a surgeon that knows the complications that can arise with my disease…  Poor wound healing, stitches not holding, screwing up my neck vertebrae more than they already are, etc.

So there’s that. I’m not typically one to ask things for myself, but if anyone could spare a moment to pray that they don’t miss anything tomorrow when they start looking in and that there’s actually someone on staff that knows about my rare disease and everything that can present with it, I’d really, really appreciate it. I’m being told I’m terribly Stoic about this, but I think I may just be waiting to crumble when it’s all said and done instead of before it begins.  Come Tuesday or Wednesday I may finally be a mess.

I say again, this isn’t becoming a chronic illness blog, but it is my personal blog…  It just feels like it lately, because my reality is managing this stuff constantly.  My life is 5% terrifying symptoms and 90% feeling like a complete hypochondriac that just can’t get her life together most of the time…  And 5% doctors finding terrifying things actually happening.  Good times!