Fiercely Independent Pam

Tag: IIH

  • IIH Is A Scary Disease That Always Raises Questions at the ER- Especially About the VP Shunt.

    I don’t always talk about specific health issues I have. Sometimes, when something is going wrong, like with my shunt, I write about it. Having the shunt is because of my IIH- This was discovered in Florida when my eyes started to be difficult and I was diagnosed with papilledema, which is dangerous, sometimes permanent optic nerve swelling. It is treated with eye drops that are similar to eye drops used for glaucoma. I’ve been using these eye drops for a couple of years now. The doctor believes that beyond treating the optic nerve swelling, it is good preventative treatment for glaucoma since I have such a strong family trend. I constantly live in fear that the optic nerve swelling will be permanent and I will lose vision.

    Recently, I also was diagnosed with Giant Cell Artemis, where I lost a lot of my peripheral vision and it still hasn’t come back, despite having the VP Shunt. I am on high dose steroids (dexamethasone) and I just got a new medication after the prior authorization. Hopefully, I can start cutting back on the steriods.

    IIH is a scary disease, where you never know what is going to happen and the ER is always concerned with the VP Shunt.

  • When it Really is All in Your Head

    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.

  • Advent/Christmas Celebrations Sprinkled with More Doctor’s Appointments!

    Advent/Christmas Celebrations Sprinkled with More Doctor’s Appointments!

    The rush before the holidays used to be insane for me! When you lead a Catholic School, you literally have to celebrate everything in the month of December and the season of Advent. Saint days, concerts, surprise visits, Santa landing on the roof of the school, the Gingerbread man running off his tray… EVERYTHING! It’s so much fun, but exhausting. I miss it- A LOT! Now that I am living in senior housing, we have a lot of activities for the Christmas season. I am enjoying finding time to share talents with others. It also means a lot of doctor’s appointments in a short amount of time because offices are closed a lot during December for their own activities.

    So, I’ve been busy with appointments. BIG appointments. I feel like I am past the point of going to appointments to survive and now finding ways to thrive and prevent bad things from happening. Yesterday, I had my annual brain MRI for my V/P Shunt and to also take a peek at the pituitary tumor that lives in my brain. The MRI is less than comfortable since they have to not only stick you deep into the MRI machine, but also place a cage like thing over your face and head. It took about forty minutes inside the machine, and really the only thing I ever think of doing is praying.

    Yesterday afternoon, I also had a Telehealth with the Dysautonomia specialist at MUSC (AKA “The Wizard”) He was his kind, understanding, knowledgeable self. We talked about the skin biopsy I did in October, which was very positive at all three sites for small fiber neuropathy. Still trying to learn what all that means. We discussed the need for me to pick up the cardio rehab program again and the frustrations of trying to get the Zeen approved. We changed a few medications to help prevent my blood pressure from bottoming out. He invited me to reach out if I needed anything but scheduled a follw up for spring time.

    Today, I made the trek down to MUSC for two different appointments, with the first starting at 8:30am, so it was an early morning. My first appointment was with an infectious disease doctor who specializes in risk assessments for future surgery. In my case, I was referred to her by an orthopedic surgeon for possible total hip replacement surgery. She had some grim thoughts about complications with the surgery, stating that while the average risk of infection for someone is around 1-1.5%, my risk was near 10%. She had some ideas to mitigate the risk some including nutritional support, blood work, and nasal swabbing all before the surgery. It’s a scary proposition and I have no idea where I land with it all.

    The second doctor’s appointment was my annual appointment with a neurosurgeon about my VP Shunt and IIH. She checked the shunt settings (they didn’t move during the MRI)and also reviewed the MRI. The shunt is doing its job a draining extra spinal fluid away from the brain. We discussed that my recent weight loss and use of a GLP both help reduce the pressure. The next step is my annual torture at the eye center to determine if the optic nerve continues to be affected by the pressure. My hope is that I receive an “all clear” and can stop taking the diamox medication that I hate taking. I have another appointment with a different neurosurgeon soon to review the results of the MRI in regards to the pituitary tumor- which spoilers alert- is growing and secreting hormones at twice the rate it did last year, but that’s a conversation for another day!

    So there it is, a weird brain, high infection risk, and blood pressures that won’t behave. I am beyond a hot mess- and just so complicated. I am so fortunate to have MUSC in my life and their expertise and caring nature fit my needs. It’s just a shame that they are over two hours away and require a small mortgage payment to get there and back.

    Advent is here! We are all counting down the days until we get to meet our Lord in swaddling clothes lying in a manger. It’s exciting enough, I do not need this level of craziness from the medical world.