Fiercely Independent Pam

Tag: shaved head

  • 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.

  • Appearance Matters: When Chronic Illness Steals Your “Look!”

    No matter how hard I try to pretend that my appearance doesn’t matter to me, I always know it does. During the pandemic, I was very sick. I spent more time in the hospital than home and had many rounds of tough medications and treatments. All of this caused havoc on my body and its appearance.

    I was on steroids constantly and not just a little Medrol pack or short course, but iv and high dose Decadron for months at a time. At one point I gained so much weight, so quickly that my stretch marks began to pull apart and tear the skin. The steroids allowed me to continue breathing and it was stressed to me that I needed them. I spent half my day on a non-invasive ventilator and sometimes the whole day. All of this took an amazing impact on my appearance.

    When you add on the complications of the pandemic- not really going anywhere or being able to get to a salon, the results were dramatic to my appearance. Besides the stretch marks, which I continue to battle with every day, my hair was thinning and falling out. My once thick curly/frizzy hair became baby fine and a simple act of brushing it or washing it, led to major loss. My eyebrows thinned out as well and became almost non-existent. I hated my appearance, but also was so proud of myself for surviving.

    Fast forward to October 23, 2020, I made myself an appointment at my favorite salon for a hair cut (shape) and color. I remember it was surreal to deal with the rules of the pandemic and wasn’t able to have it blown out or dried. A simple visit became a statement that I was going to “win.” Treatments weren’t going to hold me down and hold me back. I radically changed my appearance from a worn down- sick person, to a warrior, determine to fight my demons and not let the scars win. I chose to go red and loved the color change.

    Little did I know that I would eventually have to shave my entire head for brain surgery. (Click here for more about that). My hairdresser at that amazing salon was with me through it all! She is a perfect example of a hero without a cape.

    I will continue to not let the hard days win by ignoring my appearance when necessary, but celebrating it when possible. Today, I continue to fight with my hair- but love the curls God granted me and the wild, unpredictable nature of having curly hair.

    As for the stretch marks- I am at a loss. I have decided the best thing to do is embrace them as battle scars. They stand as a testament to all I have won! While not the convention of beauty, I find them amazing- a statement of what our bodies can do for us!

    The result of my beauty treatment at the salon- notice the awesome color, but also the crazy thin hair and hairline.

  • Happy Shunt-anniversary (4 years and counting)

    I really wanted to write something about my shunt-anniversary. That is the day that I “celebrate” for having my vp-shunt placed. A vp shunt drains the extra spinal fluid that builds up in my unique brain and dumps it into my stomach area via a catheter that runs the length of my abdomen. This is due to a condition I have called IIH or Idiopathic Intracranial Hypertension (IIH), also known as pseudotumor cerebri, is a condition where the pressure inside your skull increases for no apparent reason. This elevated pressure can cause various symptoms, most notably headaches and vision problems. It primarily affects women of childbearing age, particularly those who are overweight. I was the perfect candidate for this unique disease. I had a series of bad headaches (totally unable to be controlled, needing ER visits or admissions), eye issues like pain and double vision as well as loss of vision, and neck/back pain.

    After a ridiculous amount of ER visits, being labeled as a wimp or not being able to handle a simple headache, or a drug seeker, I was finally referred to a neurologist. The neurologist looked at my unique medical records and went on a hunch that something else was going on. Multiple tests then happened included an always fun and painful lumbar puncture. Measurements were taken of the pressure at the opening and closing of the puncture, which has to be done without anesthesia of any kind- YIKES! Mine was very elevated indicating a potential problem. Around the same time, I started seeing a wonderful eye doctor. He diagnosed me with papilledema (swelling of the optic nerve) that could cause me to lose my vision permanently if no action was taken. The combination of these two events got me a referral to a neurosurgeon.

    On my first appointment with the neurosurgeon, I was told three things, I had a weird tumor (nothing too scary), that officially was diagnosed with IIH, and I needed brain surgery (again) to place a shunt. Oh, and the surgery would be within the week. I, for the first time in a while, was rather stunned and didn’t ask my usual crazy number of questions. One thing that stood out to me was the fact that that I would lose my hair on the side where the shunt would be placed. I latched onto this thought and had to control it. So, I did what every rational person would do- I had my head shaved in advance of the surgery.

    I made a quick decision to shave my head- literally within twenty minutes of leaving the neurosurgeon’s office, as I had a pre-scheduled hair appointment. I walked in to my wonderful hairdresser and asked her to shave my head. She asked me several times if I really wanted to do it. I was determined to control whatever I could at this point and she not only shaved it for me, but wouldn’t charge me for the “cut” either. I remember driving home, bald as my father, and wondering what they were going to say. Both were in complete shock about the hair and major surgery that was going to happen so soon. I snapped a picture and sent it out to the universe announcing what I had done.

    The surgery was pretty complex and I spent several days in the ICU. I had a big incision with staples on my head as well as my abdomen. I am blessed with not remembering pain long term, but remember that my wonderful doctors including my neurosurgeon and pulmonologist rounded daily, if not twice day. After being finally placed in a regular room, I went home at day eight. I was so glad that I shaved my head because it was nasty after the surgery and caked with blood, staples, and anything else that came with the surgery including not being able to shower for another two week and only using baby shampoo after that for a while. My crazy curly hair would have never managed that sentence, plus it was summer in south-west Florida!

    My hair grew back very slowly, but healthier than ever. There were a few sunburn moments, but I quickly learned to find some awesome hats (with the help of some friends). I look back now on the decision to shave my head and realize it was one of the best, most freeing decision I have ever made.

    Having a shunt came with something I wasn’t prepared for at all, mainly the very real fear of the shunt getting infected or damaged and being so close to the brain. Every stupid infection without a simple source raises a red flag, as does each non-typical headache, or injury to the head. I can’t even count the number of shuntograms, ct studies, MRI’s, or x-rays that have been taken. I am often surprised that I am not green from radiation. Nonetheless, I would have the shunt placed again given the choice. My shunt, while temperamental and fragile has saved my vision, and freed me from the worst headaches of my life. I have to be careful around magnets, which is oh so much fun when a doctor orders an MRI and caused me to have to change things like my mask for my sleep machine (NIV) because it had magnets.

    I have some scary moments with the shunt so far. A few concussions, viral meningitis, changes in the programable valve, ER visits, trips to MUSC and more. When I moved back to Myrtle Beach, I was nervous about losing my beloved neurosurgeon, but I found someone at MUSC, an amazing woman, about my age that takes no prisoners. I like that approach! Somedays I forget that I could’ve lost my vision or that I have a foreign and expensive device in my brain, other days its one of my first thoughts, either way, its a part of me and my life story.

    I wish I smiled, but this was a few days after the shave…