My Chiari Experience : Diagnosis and Upcoming Surgery
Truth be told, I’ve gone back and forth about writing todays post. Even though I blog, and am present on social media, in all reality, I’m still somewhat of a private person. Some of you have been loyal readers for a couple of years, and you’ve seen glimpses into my life. You know I’m the wife of a retired Army soldier, and a mom of 4 boys. I like to craft and sew, and cook it up in the kitchen. These are always the characteristics that somewhat define me. If you were to put everything in a box about me, those would most likely fill it. But life isn’t always that simple, is it?
The truth is, I haven’t really been able to sew for over a year now. My vision just doesn’t do fine details like it used to. If I concentrate too long on something up close, it blurs and then it’s gone. Remember that coloring post I did last week? I can’t tell you how challenging that was. When this first occurred, I went to my eye doctor. We decided I was just getting old, and I switched to bifocal contacts. It did help, but the over all problem was still there. One day when I was on the computer editing pictures, both eyes suddenly had a black circle in the middle of the focus area. Blinking, looking at other objects, nothing changed it. And within a few minutes that circle started increasing in size. Eventually almost all my vision was gone.
I texted my neighbor who dropped everything to take me to my eye doctor, who saw me immediately. The good news was that my retina wasn’t detached. The eye doctor started asking me a lot of questions about how often I had headaches. He told me he thought this was the onset of an ocular migraine, and that I should probably follow up with my regular doctor. I told him I had had a few migraines, but never with auras or light flashes, or vision issues. The truth was, every single day I woke up with a headache. Somedays it was better than others. But these headaches weren’t migraines. They felt more like a squeezing. Somedays it was pounding. Sometimes if I drank enough coffee, or took enough advil, they would almost seem like they weren’t there. Except they were. An Always constant ache in my head. He urged me to ask my doctor for an MRI. The next time I saw my doctor, we agreed it was most likely an ocular migraine and we’d keep a tab on things. I didn’t lose my vision to that extent for a few months, and I just sort of shrugged it off. That was in the fall of last year.
This spring my headaches seemed to come on stronger and harder. The coffee and advil weren’t cutting it as well as it used to. I was exhausted all the time. The pain never seemed to go away. In June, I was diagnosed with pneumonia. One of the things that always makes the headaches worse is coughing. When I had pneumonia, I could not stop coughing, and my headaches were beyond severe. I can remember thinking if I could just drill a hole in my head, it would feel so much better. The pain caused vomiting, and my vision loss started up again. I would get the almost total loss of vision several times a day.
When I went to my doctor to have the X-ray to confirm the pneumonia was gone, I told her of my concerns. We decided it was most likely migraines, and I could start some medicines to prevent them and to try to get them under control. She thought it would be the best if I had an MRI to rule anything out, but assured me she thought it would all come back normal.
In July, I had my first MRI. I was relieved it was over and figured I’d be able to start medicines the following week. Two hours after I got home, my doctor called. I knew immediately it wasn’t migraines. I remember thinking, please don’t let it be a brain tumor. Please don’t let it be a brain tumor. My doctor told me that surprisingly enough, something did show up. She told me I had what was known as an Arnold Chiari Malformation. She told me that she wasn’t really qualified to treat me for that, and that she’d put in a referral to a neurologist or neurosurgeon for me.
Of course the first thing I did after hanging up the phone was to google search Chiari. (This site has good info for those of you who are wondering) Suddenly, little odd things made sense. I had seen an ENT earlier this year for the constant ringing in the ears, and feeling like I was losing some of my hearing. I had also been monitored by a cardiologist for the last 2 years because I have dizzy spells. Several times a day, the room will suddenly shift. If I am standing talking to you, most likely I will have my hand on a table, or wall. My husband had commented a few days before that my left foot seemed to be off balance a bit.
The first doctor I saw was a neurologist who spent about 5 minutes with me and told me it was migraines. He assured me that Chiari doesn’t cause symptoms and that if I started some of the medicines I would be just fine. My doctor called to ask me how it went, and when I told her, she told me she thought it would be good to get a second opinion. It was my brain after all.
The second doctor I saw was a neurosurgeon. We had a much longer appointment, about an hour long. There were a lot of questions. Things like, “what sort of things trigger it or make it worse?”. Coughing always made it worse. Laughing. Bending over. Those things always increased the pain, but the pain was constant. We also had a physical exam where he checked a lot of reflexes. My left side didn’t pass a lot of the tests. My reflexes were over reactive. I had numbness and loss of feeling in a few spots. There were several other neurological deficits present. We did more MRI’s. We ruled out aneurisms, and tumors. This neurosurgeon was the first to mention intracranial hypertension. He suggested to surgically place a shunt to increase the flow of spinal fluid.
It was at this point in time that I really put my google search into high gear. Chiari is still somewhat rare (with more MRI’s performed it is increasingly becoming less rare). There are not that many doctors that deal with it. I decided to see someone who dealt with it more than my local neurosurgeon does. My search lead me to Dr Jimenez in San Antonio. After a my first appointment, it was very clear that surgery is my number one option. Every case is different, but at this point, my rate of decline is such that I need to do it now (once you have the nerve damage, it is possible you may not get them back).
So on the 28th of December I am having the posterior fossa decompression surgery to alleviate my symptoms. There is no guarantee with the surgery. It will not cure me. The hope for me is that it will prevent any more damage. The greater hope of course is that my spinal fluid flow is restored, and I will get relief. My recovery will be a long one, and I’m not really sure how it will affect my blogging. The first few weeks may be recipes I’ve taken photos of and never posted, some travel posts, guest posts, or general updates. I’m simply going to try to go with the flow.
When I first told my brother, I explained that it wasn’t so much that my skull was just too small and malformed, it was obviously because my brain was just way too big for my skull. Obviously, right??!!! Because of this joke, I’ll be using the hashtag #BigBrainProblems when I post updates, in case you’d like to follow along.
I so love all my readers. There have been many days that blogging gave me a reason to fight through the discomfort. I’ve been stretched in ways I never imagined this year, and I am forever grateful for my online community. I felt it was only fair that you see the “not so pretty” behind the scenes and that I be open and upfront with you. I appreciate you all so very much!
Posted by MrsMajor Hoff
Howdy everyone! I'm Sara, aka, Mrs Major Hoff
I'm glad you've stopped by to visit. If it was in real life, I'd offer you a cup of coffee.