God is Faithful & I got Diagnosed with a Rare Brain Disease
I have Pseudotumor Cerebri.
Also known as Idiopathic Intracranial Hypertension (IIH).
Also referred to as “Liquid Brain Tumor Syndrome”.
No, it isn’t cancer. No, there is not a tumor. No, they don’t know what causes it (thus the “Idiopathic” part). Yes, I am doing okay. God is faithful. Read more, below!
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Well hello, 2024. I have been pretty absent from my blog for the last several months. Sorry about that. Sometimes, life becomes all-consuming and something has to hit the back burner. This space had to take the hit for me for a bit. But I am back and hoping to be more consistent moving forward!
I started out this new year claiming victory since 2023 was such a nightmare. For those of you don’t know, we went on vacation to Florida in February 2023 and I tripped at our resort, (nearly falling over a third-story balcony railing) breaking my left ankle, my right foot, and tearing several tendons and ligaments in both feet/ankles, my right hand, and right shoulder. I spent most of 2023 in a wheelchair recovering from surgeries and wearing a walking boot. When I wasn’t in the chair, I was using a *super cute* mobility knee scooter. But don’t worry, I did not let it get me down! *Eye twitches*
I just knew that 2023 was going to be left in the past and 2024 would be a year of new beginnings! That has been true, so far… Just not the type of “new beginnings” I was expecting.
Back in May 2023, I started having issues with extreme redness my right eye. It didn’t hurt or itch, I wouldn’t even know it was red until others would approached me with concern saying things like “Oh my gosh! Are you okay?” Here is a picture:
At first, I assumed it was allergy related. Since moving to Chatt in 2019 (the seasonal allergen capital of the world thanks to the mountains surrounding the “dust bowl” that is Chattanooga), my allergies have been other worldly. I am talking watery and itchy eyes, sneezing, and ear infections all. the. time! I made sure to take my zyrtec regularly, and even talked to my primary doctor about any additional allergy meds I could take (she added montelukast) and I figured the problem would resolve on its own. When it didn’t, I decided to see my ophthalmologist to rule out something like a corneal ulcer or something. All of those tests came back normal, so my eye doctor assumed I was having an allergic reaction to my contact solution. We switched solutions, my eyes seemed to clear up, and we thought we had found the problem! Until it came back.
Not only did the redness in my eyes come back, I also had some really strange allergic reactions to a few different things that I had never been allergic to previously: (1) gel nail polish- my nails were literally lifting away from the nail beds and bleeding and blistering. It was wild and so painful, (2) meloxicam- a strong ibuprofen prescribed by my surgeon after ankle surgery- it caused horrific cramping. I was walking out to my car and was doubled over in pain. It felt like my internal organs were trying to fall out of my body. It only lasted a few minutes, but it was terrifying, and (3) I started having acne appear on my face, worse than when I was fourteen. Picture of my acne and rosacea covered skin:
My migraines started to increase in frequency, too. I have struggled with migraines since early high school. They are horrible. When one comes on, I have a very small window of time to load up on ibuprofen, grab some peppermint essential oil, a fan, my headache hat (just like this one that is only $9 right now!), and lay completely flat in a dark room until it eases up enough that I can somewhat function. Sometimes I would even use a massage gun on my head because the vibration would help to numb out the pain. Nausea and vomiting, lack of appetite, lots of misery-induced tears, and prayer after pray of me pleading with God to please intervene and ease the pain. Talk about debilitating.
The fact that these headaches were becoming more frequent was a major problem. Not only did I not want to live with the constant pain, I also knew I couldn’t do my job well, I couldn’t do my grad school work well, and I couldn’t be the wife my husband needed me to be if I couldn’t function. I noticed that my vision, specifically in my right eye, was changing a lot. So I went back to the eye doctor assuming it was just time for my new prescription. My prescription had changed slightly, but the strangest part was that all of a sudden, my right eye was now nearsighted while my left eye was farsighted. Those glasses took some getting used to!
In addition to my bizarre prescription change, my eye doctor also ended up noticing I had a lot of dryness in my eyes and was concerned about the increase in my headaches, so she ordered some blood work, including an autoimmune panel to test for Sjogren’s Syndrome, Lupus, and anything else that could be flagged in an antibody test. Everything came back normal. I had two major ankle surgeries (one in May, one in September) in the middle of all of this, so my eye stuff had to take a back burner for a bit.
At this point, it was probably October. My new prescription glasses had come in and I had been wearing them for a couple of weeks. I had a follow up appointment to ensure my new prescription was working okay and to make sure my redness was under control. At that appointment, she had me cover each eye while wearing my glasses and read the tiny letters across the room. My right eye failed the test again. We did some more adjustments on my prescription and found that I needed a stronger power in that right eye now. The same process happened three more times over the next several weeks- I would go home and use the new prescription for a couple of weeks, go back for a follow up check, and the right eye would be worse. At the third appointment, my eye doctor noticed my optic nerves looked pretty enlarged and decided to send me for further testing; a visual field study (test peripheral vision) and an OCT laser scan (that looks deep at the optic nerve). When she called that other doctor’s office to setup my appointment, she had requested those scans be done urgently, so I started to get a little bit nervous, but I told myself it was going to be nothing and that everything would be fine.
About four days later, (we are nearing the end of November or so at this point). I went in for those scans. The techs that performed the tests were not allowed to give me any results and said my doctor would call as soon as she had them. The unfortunate part was that the results could only be sent snail mail after a doctor had read them and made a report of findings. This process took about eight days. Eight of the longest days of my life. I was sure once we got those answers, though, everything would make sense.
My doctor finally called with results about a week after Thanksgiving. I got the call when sitting outside of my counselor’s office right before my session. This was Divine intervention, as The Lord knew I would need a safe space to process all that I was feeling after getting the call. When I answered, my doctor said “Hey Molly, I got your results back from your tests. The visual field study looks great- no issues there. The OCT, however, shows some sort of tumor or mass on your optic nerve. The next step would be to get you into a neuro-ophthalmologist, but there aren’t any in Chattanooga. The second best option would be to see a neurologist, but there are none who are accepting new patients in Chattanooga currently, and even if they were, it can take 6 months or so to get in to see someone and we needed something that could help us figure out what we were dealing with more quickly. I am going to call a retina specialist and see if they have the ability to do a B-scan which can give us a clearer picture of what we are dealing with.”
I said “Okay. Thank you.” Immediately, I got out of the car and walked into my counselor’s office. As soon as my counselor said “Hey, how are you?” I started sobbing. We are talking ugly crying at this point. I was so scared. All these thoughts started racing through my mind, “How was I going to tell my husband? My kids? My siblings, nieces, nephews, grandparents, parents, aunts, uncles? A tumor? Was it cancer? was it brain cancer? Was it benign? Was it malignant? Would I live even another six weeks? Would I become a burden on everyone around me now? Why would The Lord call me to go to graduate school if He was going to walk me through this?”
Once I was able to verbalize all of my fears, Sarah (my counselor) reminded me that God is not a God of fear or panic. He wouldn’t call me to something to abandon me, and He wouldn’t allow me to face a thing that He didn’t have an ordained purpose for. I knew she was right. We concluded our session with prayer. She prayed over me prayers of health, healing, deliverance, and peace. Once I got in my car, I sat there for a moment. I spent my drive home talking with God, saying “Okay, God. I am willing to do whatever you want. Give me courage and strength. Give me peace. Above all, help this whole situation point back to Your glory in a way that shows everyone around me, especially those who don’t know You, that You are the God who works miracles together.” I didn’t stop feeling afraid, but I did have peace.
Getting into the retina specialist took longer than I would have hoped due to the holidays. We sat waiting in the unknown for about fifteen days, then I was finally able to be seen on January 4th, 2024. The B-scan (like an ultrasound of the eyes) was performed and the doctor was able to tell us that the mass seen in the OCT scan was not actually a tumor! Instead, it was a sort of sack of excess cerebrospinal fluid pressing up against the optic nerve. This seemed like great news! I said, “Great! So I don’t have a brain tumor?” The doctor said “… Well, I can’t guarantee that. But I am going to refer you to another doctor who has more experience with conditions like yours, dealing with increased pressure in the brain. He is a neuro-ophthalmologist. His office will call you within a week to set up an appointment.”
Great. More waiting. Another referral. Still no official answers, and no means of treating any of my debilitating symptoms.
It took two weeks for the new doctor’s office to call me and set up an appointment. It took another week and a half to get in to be seen. By the time we got to the appointment, I was so ready to finally get some answers. This doctor performed several tests. I was in his office for about two hours. By the time he went over all of the test results with me, I was exhausted and my head hurt so bad from all of the poking and prodding. The doctor said “The good news is, I don’t think we are at a place where your sight is in jeopardy…. yet. There is, however, some concern with these optic nerves and the excess fluid causing pressure behind them. I am going to order an MRI of your head, and an MRI of your neck, as well as an MRV (an MRI of the veins where they inject dye to check for thrombosis/aneurisms, etc.). I also want to order a lumbar puncture/spinal tap. We need to rule out any tumors or anything going on in the brain to be certain, but I think we are dealing here with a condition called Pseudotumor Cerebri (also known as Idiopathic Intracranial Hypertension and Liquid Brain Tumor Syndrome)
Leaving this appointment felt both frustrating and also relieving. I wanted answers desperately, but at least this way I knew what we were going to be looking for.
My MRI scans and MRV came back clear and unremarkable (HUGE PRAISE & SIGH OF RELIEF).
My lumbar puncture/spinal tap was another story. The whole lumbar puncture process was painful and honestly, super traumatic, but it is done, and we got answers! My opening pressure was so high (35), spinal fluid actually shot out onto the floor! Knowing the doc had said I needed 25 or above for a diagnosis, I knew immediately that I finally had my answer. The next day, my doctor called to confirm and sent in a prescription for me. A “baby dose”, he called it, of Diamox- a diuretic.
I had joined several virtual support groups and done tons of research about Pseudotumor Cerebri leading up to my spinal tap, so I had heard all about Diamox. The majority of stories I had heard about Diamox were that it was intolerable and horrific. Many people actually said they would rather just live with the pressure migraines caused by the condition instead of dealing with the side effects of the drug. The side effects ranged from severe dehydration to kidney stones to hospitalization. I had also read that because it is a diuretic, it also keeps you from sweating meaning that sun exposure becomes increasingly dangerous and toxins have no way to escape the body. I had no peace about taking this. I even told my doctor that. He said “Yes, it is true that many people cannot tolerate the drug, that is why I want to start you on a baby dose and see how it goes.” I still didn’t feel right about it. I chose to not pickup the prescription at the pharmacy.
Apparently, when Diamox is not well tolerated, the next option is Topomax. Topomax is an epileptic drug that many people also do not tolerate well. Several comments I read regarding this drug were saying things like “Sure, you won’t have headaches anymore, but you will also wake up wondering what day it is or what your name is.” I knew that wasn’t an option for me either. At this point I started to panic, because the only other option would be brain surgery to have a shunt or stint put in. The people in the support group who have had this surgery reported that it was great for about three years, but then their tubing became infected or got wrapped around internal organs or they ended up with issues that landed them in the ICU!
Statistically, the mortality rate for this condition is also like 56 years of age, with the suicide rate among women who suffer from this condition being higher than normal due to the debilitating pain and suffering it causes. All of this information, the statistics, the personal testimonies- they all had me in a panic. Then I remembered “God has not given me a spirit of fear!”
I knew that I needed to pause and pray. So my husband grabbed my hands and prayed for us. We prayed for answers and just waited on The Lord to give us some direction. As we sat in our bedroom talking, the thought occurred to me- “There’s a kink in the hose.” I immediately pictured my spinal cord with a kink in it, blocking the flow of spinal fluid. I asked my husband “What if this is the key? What if the flow of fluid is really just disrupted or blocked somehow?”
Coincidentally, (or not so coincidentally, because God is GOOD), I had already set up new patient appointments with 100% Chiropractic a few weeks prior because of their new patient special- only $21 for x-rays, first adjustment, and a massage! I knew Jake and I could benefit from the massage alone and at that price, I couldn’t pass it up. So we decided that we would ask the chiropractor for some supplement recommendations and see if maybe some spinal adjustments could help. More on that later!
The night before our first appointments, a family friend reached out via Facebook Messenger (thank you, Kaye!) and shared that at the beginning of the year, she had posted a Facebook post asking people to share their favorite passages of scripture. She would be writing those passages in a calendar and would be praying those verses and for the people who recommended them. It just so happens that Sunday started the week where she had written my name and verse down! The verse I had shared with her weeks prior was Proverbs 4:20-23 (CSB), which reads:
My son, pay attention to my words;
listen closely to my sayings.
21 Don’t lose sight of them;
keep them within your heart.
22 For they are life to those who find them,
and health to one’s whole body.
23 Guard your heart above all else,
for it is the source of life.
When I read verse 22, I could feel the Presence of the Holy Spirit so tangibly. I felt so much inexplainable peace and knew that He had a plan to heal me. I told Kaye that I was so thankful for her reaching out, that God’s timing was perfect, I needed to read those verses that night. I shard what had been going on with me. She asked how she could pray for/with us, and I knew exactly what to ask. I asked her to please pray for the following:
1. That we would find a chiropractor who can help us far beyond what we could ask, think, or imagine.
2. That we would find the right neurologist to work with.
3. That we would be able to design a treatment plan and protocol that would allow me to continue my work here at the childrens home and also sustain me as I go through graduate school? I’m currently pursuing my masters in counseling with a plan to get my doctorate in counselor education and supervision after that.
4. And finally, will you pray for the pain in my body? I have debilitating migraines constantly because the condition causes an excess of spinal fluid to build up in my brain and causes swelling. This can lead to permanent blindness if left untreated. In the meantime, my eye sight fluctuates greatly and can be quite straining at times, inducing other headaches. Thank you thank you thank you. We need all the prayers we can get this week!
She agreed to pray with us, and I went to bed that night feeling hopeful. The next morning, we woke up for our 8am appointments at 100% Chiropractic.
My first impression of the office was that it was beautiful and peaceful, very aesthetically pleasing (which for your girl, is a very welcome experience). Definitely passed the “vibe check” as the kids say these days… There was fun music playing, the atmosphere was lighthearted, and every single person was genuinely kind. One of the receptionists, Gabriella (I think she may actually be the office manager), gave us a tour of the office and took us into a private room to chat about our medical history get us setup for the doctor to come and take x-rays. When she asked us what our goals for care were, we answered with the basics- less back pain, more agility and energy, fertility, overall health and wellness, etc. I then shared all that we had been walking through with my new diagnosis and said that above anything else, handling that was my priority. She looked at me with so much genuine compassion in her eyes and said “I am so glad you’re here- I genuinely think we can help you. You’ve come to the right place.” I had so much Holy-Spirit peace when she said that.
Shortly after that moment, Dr. Bryan came in and took us across the hall for x-rays. In the short twenty seconds (or less) that it took to walk across the hall, he flipped through my chart and said “Ah, yes- I think I know what’s going on with you.” He then positioned me in front of the x-ray machine. Jake (my husband) stood in the back with him. I could see Dr. Bryan nodding and pointing out something to Jake and Jake nodding in response. Then, Dr. Bryan grabbed the spine model and said to me “So, this bone is supposed to be like this [pointing to the C1, Atlas bone, right at the top of the spine, referencing the normal positioning of the bone] but yours is like this…” He then pinched the bone in such a way that it literally causing something like “a kink in the hose” of my spinal cord! I couldn’t believe it. I literally started crying out of relief and said “You have no idea- you just told me more in about two minutes time than four other doctors/specialists have been able to tell me in nine months.” He asked if he could give me a hug and encouraged both Jake and I saying “if you guys are serious about this, I really think we can help you.” Here is a visual. The left is a textbook “near perfect” cervical spine. On the right, is mine. The C1/Atlas bone that is circled should have a nice space above it, just like the other bones. The atlas bone should also lay parallel to the skull. Mine is almost inverted.
That was Monday, 2/27. By Friday, 3/1 I had three chiropractic adjustments and went three days without having a migraine. I had a *slight* (so slight it was totally bearable without any meds or oils) headache on Friday morning (it was also raining, which is prime migraine weather) and after my adjustment, it was gone. Completely. I am in awe of the relief I have already experienced and I am so thankful that The Lord saw fit to bring us to this place that believes in supporting our bodies, giving them tools to heal themselves. Just as God created them to do!
Over the next several months, I will be getting frequent adjustments, making some major dietary modifications, and working to get in more movement each day. I will continue to update the blog with posts about how I am doing.
I want to point out that I am not a doctor, I am not a medical professional in any way, and I am not saying that people with this condition do not need to take medications. I made that choice at my own risk.
I simply wanted to get my story out and honor what God has done in my life recently. He has been gracious and kind and I know He will continue to heal me, especially as I seek to honor my body.
Thanks for taking the time to read all of this. If you made it all the way through, you either really love me or were in need of some hope yourself. Whatever the reason, I am thankful you’re here. I hope you stay awhile and maybe even find some more encouragement. (Maybe check out this post here, or this one here!)
If you are someone who is also suffering with Pseudotumor Cerebri/IIH, feel free to email me with any questions you have regarding my experience: [email protected]
