Tag: My Tribe

My head is complicated. I just want to throw that out there. Between a left sided craniotomy for a bizarre finding of a canal dehiscence (essentially an extra opening of my ear), sinus surgery, multiple broken nose injuries (thanks lacrosse), more concussions then I care to count, including a TBI, ongoing migraines since I was little, IIH (Idiopathic Intracranial Hypertension), which forced me to get a shunt, the beginnings of glaucoma, cataracts, optic nerve swelling, and an ear neuralgia, so much can go wrong so quickly. I cannot afford to mess around with my head and need the guidance of a great team to ensure when something seems to be going wrong, Unfortunately, this isn’t the easiest to attain.

For the most part, with the exception of the regular migraines and sinus stuff, these head issues started around 2015 with stronger headaches, which I seemingly related to my high level of stress from the principal’s office. Then upon me moving to Myrtle Beach, they grew worse and turned into several rounds of vertigo and were unable to quiet down. This occurred around the same time I was diagnosed with CVID (a primary immune deficiency) and had sinus surgery. All this great care occurred at MUSC from wonderful doctors.

After recovering from sinus surgery and starting treatment (IGG infusions for the CVID, I appeared to be doing better. Until I was not and was knocked for a loop right before Christmas. I landed in the local hospital for a headaches that I just couldn’t manage. They loaded me up on meds of all sorts, enrolled me in physical therapy and gifted me with a cane (my first real taste of a mobility device). I developed serotonin syndrome, which I wouldn’t wish on anyone- the pain and unknowing was horrible. Despite a great job decorating my cane, I hated every part of it. I was determined to do something else.

I successfully attempted to get care at the vertigo/vestibular clinic at MUSC by essentially forcing my way in as legally as I could. I met my first real “Wizard” there and he was wonderful. I did some crazy testing that I thought at the time was going to kill me, but he got the information he needed, and I was sent on my way to awesome PT who specialized in vestibular/vertigo issues and lived closer to me. I completed a rigorous schedule of PT 2-3 times a week, OT 2-3 times a week, and speech/cognitive service at least 1 time a week. It began interfering with my school schedule, but it was helping.

I was also placed on some new medications, one of which caused a major cognitive decline resulting in poor performance at school, driving impairment (I had to stop driving), and a development of tics and other nasty side effects. I eventually had to come off the medication, despite it helping my headaches and vertigo. This spiraled me into a deep depression, made only worse by my continued troubles completing tasks and being able to simply make it through the day. I found out that the Cleveland Clinic had an intense headache program that was inpatient and made it my job to get there for an evaluation. So, I jumped on a plane and went out there by myself and got evaluated. I was told that the program probably wouldn’t be fully covered by insurance, that it would probably benefit me immensely, but the waitlist was long, and that was only if I could jump through the many hoops they placed in front of me. I wanted it so bad, but it wasn’t “in the cards.”

So, I went back to my doctor as MUSC and back to the wonderful neuro-rehab center and continued my therapies. Around this time, I was getting worse. My pain level was maxed out with little effort and my symptoms were increasing. The doctor and MUSC did some digging and figured out that I had this extra opening in my ear that was most likely causing these horrible symptoms. He recommended a craniotomy that would place a small bone graft over the opening, closing it permanently. For the first time, I was terrified. This seemed to be major surgery, with an ICU stay and more!

I decided to move forward with the surgery and made arrangements with school for coverage. I was pleasantly surprised by a wonderful event, where the pastor came in to an important staff meeting where I shared my news about the surgery and performed Anointing of the Sick, with the whole staff present- It was exactly what I needed at that time. I then had the surgery, woke up in the ICU, and was surprised my the incredible wrapping of my head with bandages and such. It was a major ordeal an was then gifted with my second mobility device, a large clanky walker, which I too hated, but enjoyed a little bit more after my amazing pre-k teacher and class decorated it for me!

I returned to school with my walker and went through the motions of working, slowly I was able to do more, but was not ready for the cognitive delays, especially in getting my thoughts out on paper. It made a tough position, almost impossible; but improvement was happening. I cannot stress the gratitude I had for everyone who drove me places, encouraged me, showed me patience, and prayed for/with me.

Fast-forward to 2021, during the pandemic, and new head symptoms. I was now living in Florida, fully disabled, and taking over caregiving for my aging parents. I ended up needing VP Shunt and that two was major surgery, with another ICU stay and this time, I shaved my head (see this post). I was not aware of the time, how much a shunt was going to change my life. It helped tremendously, but came with a warning- specifically that when something goes wrong with the shunt(which is normally does) it goes wrong quickly and with a lot of fear. I learned to live in fear of shunt malfunction and the need for revision surgeries. I continually worry about loss of vision and permanent blindness. It also meant constant checks, scans, and weird symptoms. I have adjusted to this fear by realizing that my faith needs to be greater than my fear.

Now, I have resumed care for my head at MUSC, and despite the distance (2+ hours away) they are always there for me. I do not get judged there as anyone but a complex patient, not a drug seeker, not an anxiety ridden person, not someone exaggerating symptoms, just me. I appreciate that so much.

This past week, I landed back in the hospital (local unfortunately) with some disturbing eye symptoms. Mostly loss of vision in the right eye and intense pain. After a stroke was ruled out and some more scans, I was placed on high dose steroids pending further evaluations. I went to a local ophthalmologist who quickly escalated my case to MUSC, so back I go! In the meantime, I am trying not to be a basket case on these nasty steroids. my optic nerve is showing some signs of swelling, but overall the steroids are doing there job, so there is that for good news!

The balance between fear of something happening and being strong is tough. You only get one head, and it needs to be taken care of.