Journey Continues

I have had so many people checking in with me, and thought it would be an appropriate time for an update. I am now 5 months out from surgery, and happy with the progress of my journey. Although progress feels at a stand still sometimes, I continue to remind myself where I started. If you see me in person, all appears great. However, inside my head there is a constant storm that continues to be frustrating, painful and uncomfortable. We continue to hope for positive progress and change with all of the side effects from having surgery on a major cranial nerve, and understand that patience and positivity is key to feeling better. I work hard each day not to focus on or display the things that continue to challenge me internally. 

CELEBRATIONS

• So much improvement and confidence with my balance! I can stand on one leg and put pants on without having to sit down. I couldn't do this before surgery.
• I'm driving (patched)!
• I have taken the year off from teaching to focus on my recovery, reduce stress, and to be fair to my students. I have not regretted this decision, as each day can tell a different story.
• Even with continued eye issues, so grateful that I do not have other palsy or tracking issues with vision.
• A new house (+ projects) with nature surrounding us.
• A new tattoo, full of hope.
• People who continue to check in, pray, and support. Thank you for your love!
• I am here. I am here. I am here.

FACIAL NUMBNESS

• There hasn't been any change or gaining feeling on the entire left side of my face (1/2 my face, 1/2 my mouth, side of my head, inside my ear). One year is still the timeline to determine if this will change or stay.
• Because I can't feel my eye, it has suffered some pretty serious scratches (on the cornea) that add additional blurring. I have to be very careful, and continue to add lubricating drops multiple times a day.

VISION

• My neurosurgeon says that months 4-6 tend to demonstrate the greatest improvement in vision. Currently, I have not noticed much change from month 1, but hope for positive change moving forward. 
• My double vision and blurriness on the left is still at a 45 degree angle. This can be exhausting.
• I still wear glasses that have a filter on the left to block the vision from that eye. The surgeon wants me to try and not wear them as much as possible. This can be challenging, as it creates dizziness and head aches. It makes me feel really drunk without the influence :)
• When I am not wearing my glasses, it creates a pretty intense burning sensation behind my eye, which also creates a blood shot eye. I'm not sure if this means the muscles are working extra hard on correction or not. Doctors didn't seem to have an answer for this.
• All of this is caused by damage to the nerve that controls the muscles.
• I am told, if things don't correct themself - a surgery is possible where they go in behind the eye and adjust muscles. I'm not so sure if I would pursue this. Yuck.

NERVE PAIN & PRESSURE

• Several electrical type shocks happen every hour. Although brief yet painful, this is hopefully a good sign that the nerves are sending signals. When the bad ones strike, I just close my eyes and let them pass.
• Week to week, the location of the shocks changes, from the top of my head, side of my head or my mouth, etc.
• There is constant pressure and burning sensation in my head, particularly behind my eye that creates discomfort. I am told, this has a lot to do with the damage to the cranial nerve.
• My temple carries the majority of the pressure. This pressure never really goes away, feeling constant head aches that the common pain killers don't touch.
• There is a general soreness inside my head that remains constant.

EAR ISSUES

• I have lost hearing in my left ear three times since surgery, all due to extreme fluid build up.
• Sometime I feel like I'm in an airplane, because my ear have to be popped all day.
• I had one procedure called a myringotomy, where they drill a hole in the ear drum, and suck out the fluid behind it. Moving forward if this continues, I have been provided a kit where I have to mail in the fluid sample. They want to rule out infection or the possibility of spinal fluid (since I did have a spinal drain after surgery).

JAW MISALIGNMENT

• My lower jaw sits to the left side, and I am unable to move it to the right.
• The top and bottom jaw do not connect like they used to.
• Again, this may be caused by nerve damage, because our nerves control our muscles.
• Eating and chewing is tiresome. There is some food I have to avoid - anything crunchy or really chewy or that requires extra chomping. Of course this doesn't stop me from eating some candy :)
• Before surgery I slept with a mouth appliance for snoring/retainer/TMJ. This appliance no longer fits my mouth with the changes, a new one is currently being made to match my new bite.

CRANIAL MUSCLE ATROPHY

• Muscle is deteriorating along my incision, near the top of my head. It feels like major concave divots and uneven structure. I am told this can be common after a surgery like this. The muscle will not heal or regenerate.
• Also common is temporal atrophy. The muscle in my left temple is deteriorating and sinking in. You may not notice until I point it out, but there is a hollowing appearance. This is caused from nerve damage or trauma to that area - which both have happened. Long term, there is a surgery designed for this, which I'm not sure I would ever pursue.

FUNNY & WEIRDNESS

• Can't feel when I hit my head.
• Although quite painful to lay on my left side, but when I do it feels like my head is floating because I cannot feel contact with the pillow.
• Food can hang out in my mouth, and I don't even know it.
• When placing my face into running shower water, I can only feel water running down my right side.
• Drool likes to sneak out of my mouth on the left without knowing it is happening.
  
  
  
  

UPCOMING APPOINTMENTS

• November: Maxillofascial specialist to discuss the jaw issues and temporal atrophy
• December: MRI to make sure the tumor hasn't shown regrowth, surgeon visits, ophthalmology & testing, audiology and testing, ENT for ear

REFLECTIONS ON WHAT I'VE LEARNED

The last five months has really been time to focus on myself; something I didn't do well in the first place. The decision to take a year off from work is providing me this personal time to heal. Making this decision wasn't easy, but I knew that adding stress would slow down recovery and increase after surgery symptoms. I did not want to be calling in sick, leaving students frustrated with their educational experience and other teachers stressed to cover classes. I am also really finding value in good rest and napping, and that most of the healing happens when I am sleeping. I find that on the bad days, sleep can be the greatest medicine or at least a band-aid for a while. It allows the body and mind to recharge, recover, leaving me feeling better. 

I have gained so much empathy for those who are experiencing anything traumatic, a health crisis, scary situations or a loss. The cards, thoughts and prayers that I have received and continue to receive are so meaningful, knowing that people continue to keep me in their thoughts (it certainly isn't expected!). Traumatic situations don't end after the experience itself, as people continue to battle pain, fear, sorrow or loss. I am so grateful that my journey continues to grow in a positive direction, time is such a beautiful healer. Every time I look back at early photos and videos it makes me cry to witness my story, and recognize how far I have come. There were days that I couldn't sit up, feed myself, talk clearly and had facial drooping. Family was there all day everyday to support me, I love them so much! 

Below are some visuals from my story.

The Iris flower is a symbol of hope. Excited to carry it with me everyday!

Vera still reflects on the scary times

5 months later :)