The last couple of weeks have been possibly as confusing as it gets. It all started when I met with my Doctors in May. I noted that I was experiencing some blurry vision on and off, and some new headaches since my good spell after the surgery. Dr. P., the Neuro ophthalmologist told me my vision had gone from 20-25/30 to about 20-45 since the last time he saw me, so I should call him when things calmed down to get glasses. Well, I called about three weeks ago after my vision began to become a pretty annoying issue. It would go blurry without warning or an obvious reason. Since I thought it was probably just my normal vision issues, I left a message with his secretary and didn’t expect an immediate reply. Well, a week and a half went by before I heard anything. Then I received a very worried call from a nurse at their office. She asked me a whole slew of questions, several of which didn’t even have to do with my vision. Then she asked me to come into the office immediately. “Um, it’s 3 PM and I live 6 hours away.” I replied. “Wait, then how far are you from the nearest hospital?” She asked in a frantic voice. I explained I wasn’t too far from our little hospital here and she instructed me not to travel more than 10 or 15 minutes from that hospital, and that she needed to speak to the Doctor but would call me right back. So yeah, by this point I was freaked out. I honestly just thought I probably needed glasses. The fact that my blurry vision would come and go was a little strange, but what hasn’t been strange for me lately? I called my mom pretty shook up at this point just to have her help me calm down. All I could think of at this point was that somehow they knew something worse was going on behind the scenes, and just as tumor growth started to creep into my mind, the office called me back. This time it was the nurse and my Doctor. They explained that since it was a weekend now, they would like me to come down on Monday and Dr P. would head in to meet me since he was actually off the whole next week. He explained he really believed this could not wait and that this was probably serious but he needed to see me in person to find out if his suspicions were right or not. I had no clue what those suspicions were, but he did barely mention increased intracranial pressure possibly due to tumor growth or some unknown cause, maybe a delayed infection of some kind, or delayed post-surgical swelling. Like I have said on previous posts though, this Doctor is very careful about not saying things when he isn’t 100% sure. So up I went on Monday morning with a great friend, Jeanne Marie, who offered to tag along (THANK YOU). We met him at his closed office which he took a few minutes opening up before we got started. He asked me a slew of questions, ran his tests, and thought, All owls think a lot (Gold star if you get this). He then explained that I would need an MRI and a Spinal tap/Lumbar Puncture in order for him to confirm his suspicions, but he was pretty sure I had something called IIH. Idiopathic (Meaning they don’t know why it happens) Intracranial Hypertension. Your skull is one solid fixed “bubble” containing important structures all supplied with nutrients by your Cerebro Spinal Fluid, or CSF. Sometimes your body can get confused and create too much of this fluid, therefore causing pressure to be forced on the soft or vulnerable parts of your brain. Brain tissue and Blood volume in your CNS also play a part in regulating your intracranial pressure (ICP) So something along the way, maybe my brain tumor, maybe something that remains a mystery, has caused my ICP to rise above normal, giving me the symptoms of all sorts of different tumors. This is the reason my vision goes in and out, and is getting worse by the day. This is also the reason for my stroke-like headaches and migraines, the constant pulsating ringing in my ears (Tinnitus), my balance issues, and most likely the cause of my worsening left sided weakness. The most common and severe consequence of this ailment is swelling of the optic discs resulting in complete vision loss. We discussed when and where I should get these tests done and he mentioned going to an ER that night but said he really didn’t see the point in me waiting for 8 hours in an emergency room when we really did have some time to figure this out. That time was just spent with me in horrible pain from the headaches. So we decided on letting me go home that night, spend the 4th of July with my family, then head right back up to Denver to receive the tests at the same hospital my Neurologist worked at so there would be no confusion with him receiving the results. I am very thankful that Jeanne-Marie came with me that day because I wouldn’t have been able to drive myself home, simply because he had to dilate my eyes for one of the tests. That little thing would’ve kept me up there by myself for the fourth, away from my kids and husband. But instead we were able to head straight home and I had a lovely day with my babies! Wednesday, Dr P. texted me and let me know it should be all set up to schedule the tests and get them done in the next day or so, all I had to do was call my Neurologist’s office. Well, three days and countless hours on the phone later, we had reached the weekend and I was no closer to scheduling the tests than before. Something about having the right person ask the hospital to ask our insurance to authorize the tests was the problem. Finally I made a friend who fought on my side, and Monday at noon I was finally able to get in… at 6:30am the next morning. So I called up Jeanne-Marie who had offered to go with me again, and she was ready, quick as a hiccup! We drove in that evening to Fort Collins to stay with friends and family, got a few hours rest, then headed to the hospital.
My pre-op nurses name was Sydney so I knew it would turn out alright 😉 The procedure went smooth, other than the fact that the right side of my spine/back didn’t go numb, so I felt the needle puncture my spine, and yes, it hurt like the dickens. One of the techs assisting the Dr. had a led apron on that was covered in little cartoon veggies all with big happy faces, so whenever it hurt particularly bad, I focused on the cute little friendly foods and made it through. When it didn’t hurt however, I was able to watch the procedure via X-ray on a screen right next to me. That got my geeky blood pumping! All in all, it wasn’t that bad. I was wheeled straight from there to MRI where I peacefully fell sound asleep (That’s a first!) and woke up to the tech telling me the scans all turned out crystal clear! Phew! Back to recovery I went to lay flat and avoid the dreaded Spinal headache. I got a little one off and on through the day but woke up that night with the worst stabbing head pain I’ve ever felt. I downed probably one too many aspirin, drank an entire bottle of water, and prayed for it to go away. I woke up a couple more times to find the headache slowly subsiding. I spent the rest of that first day laying flat in bed like they said, and golly it felt good. Sometimes you don’t realize how doggone tired you are until someone makes you rest. We had to wait two days for the results from my tests and to see my Neurologist. Thursday morning I headed into my appointment feeling crazy nervous. I had no clue what to expect at this point. And to be honest, I was afraid they would tell me they had no clue what was causing these issues. That would mean they had no clue how to fix me. Thankfully, they were able to make the diagnosis of IIH or as my Neurologist called it, Pseudo Tumor. I am literally getting the symptoms of a slew of different brain tumors, one surrounding my optic nerves, one compressing my cerebellum, one inhibiting hearing, just without the tumor. They don’t know if my actual tumor set off this imbalance or if I have had this all along, it is just now reaching a chronic stage, but they know it’s getting bad quick.
We will start by trying to treat it with the same kind of medication I am already on, just a much higher dosage. If this doesn’t treat it, there are a few more options we can try before surgery to place a shunt. It is a rare disorder, and one that almost always goes un-diagnosed until it is too late. I am, again, grateful for the kindness and compassion these Doctors have shown me through their amazing attention to detail and the fact that they always have listened no matter how many weird things my brain has thrown at them. This whole situation now, from start to finish is finally making sense. They are now starting to connect dots that seemed impossible to relate, and I see the relief in their faces as well. During the routine neuro exam he does at each appointment, he came to find my left side, mostly my arm and hand, are doing even worse than last time, and I need to get back to Physical Therapy immediately. But he also had a hope that with the combination of PT and managing my IIH, we might actually be able to regain full function of my left side. That’s the first time I’ve been able to truly see this as a possibility!
I left with a massive weight off my shoulders. All the nerves from the days before were long gone. I was, as always, in good and capable hands, placed there by a savior who has heard my prayer to deliver me. I’ve prayed this prayer often over the last few weeks of uncertainty. I thought this was probably just it. I didn’t escape brain surgery or a brain tumor unscathed. I was declining the way so many expect to see after a trauma like those. I was afraid and wondering what the point of fighting so hard was, when I remembered my God is a deliverer and he can deliver even me out of this darkness I was slipping into. It’s a hard thing for me to tell you all this, I was not proud of how weak I was beginning to feel in all areas of my life, especially emotionally. But once I remembered the pure strength of the God I serve, I was not afraid. I was still nervous because I truly believe God brings healing and deliverance in so many different forms. Wether that was me rapidly declining to the point of permanent deficits or worse, and leading a life shaped and blessed by those circumstances, or wether that was bringing complete and total healing. My God’s will and plan for this life he chose for me is greater than anything I could wish for, and I will thank him and praise him in all things. I got home last night and held my babies close, thanking God for giving me so much more than I ever deserve. Yes, things may still not go how I would like, I’m likely in for a heck of a lot more pain before we figure this out, but I know something now I feel I learn over and over again. He is with me. He will never leave me or forsake me.