Botox Injections

After a month and a half of dealing with Froedtert and my insurance company, I had my botox injections on February 19th.  The wait was agonizing.  On top of working, babysitting and volleyball, I still had to balance seeing my family, physical therapy appointments and prepping for our business trip in the beginning of March.  I was exhausted.  I broke down.  I wanted to give up numerous times.  I continuously thought of my other TOS Warriors and wondered what their day was like.  Then for them, I picked myself off the floor and kept going.

Originally they had me scheduled for March 24th, a whole month away.  I asked the nurse to relay a message to my doctor explaining that I couldn't work full time at this point or even manage household activities.  I honestly still don't know how I have a roof over my head with barely being able to work.  He pulled some strings thankfully.  Upon waiting for scheduling to call, I decided it was time to start taking Tramadol 30 mg again just to get through the days and waited for February 19th to arrive.

Just like any other early morning, I had to drag myself out of bed, avoid doorways and attempted to make myself presentable!  The trip was much more manageable now that dad and I knew the route and construction, as well as where to go when we arrived.  The wait was unbearable, considering the pain was ten times worse than when I saw him in January.  After waiting patiently for 45 minutes, I finally found myself in the exam room fidgeting with my bracelet and bouncing my leg up and down.  

I talked with Ketchum’s assistant Resident about where the pain is.  She examined my muscles and performed a strength and reflex test.  When Ketchum came in, he went over what the Resident talked about including the risks.  We talked about injecting the Pectorilis Minor but he wanted to try other groups of muscles first to see if he could stop that pain be hitting another trigger point.  He felt around for sore spots or triggerpoints that were causing referred pain and found my locked muscle (as I call it) or better known as ‘serratus superior.’  Preparation and conversation between both doctors took roughly 20 minutes. 

Two electro pads were placed on my left hand with wires leading to the EMG device.  He decided to inject that muscle along with the levator scapulae, upper/lower trapezius and middle scalene.  I didn’t need to change into one of those itchy gowns that I love, and I was thankful considering I was freezing already.  Ketchum felt around for sore spots and confirmed them with me.  The assistant sprayed me with numbing solution and Ketchum injected the botox immediately after at each site.   When he injected my upper trapezius, I felt burning pain go down to my scapula.  When he injected my lower trapezius, I felt the pain go straight up into my head.  When Ketchum injected my levator scapulae, it honestly felt like someone was digging around on my nerve, but only with slight pain.  I instantly felt a sick, heavy feeling in my arm and suddenly it was gone.  The injections themselves only took 15 minutes. 

Ketchum discussed that he would like to get a follow-up from me within 6 weeks (earlier if my symptoms worsen) via email or voicemail.  I found this super convenient and efficient because I wouldn’t appreciate driving 90 minutes for a 5 minute conversation telling him I’m fine.  The effects of the injections could take up to 10 days to kick in and can last between 6 weeks to 3 months.  During that time period I will start physical therapy to strengthen my muscles that are weak.  I cannot receive more injections before the 3 months are up, no matter how much pain I’m in, but if that’s the case we will be able to find a different pain medication.  Dr. Ketchum would like me to try 3 rounds of injections which will take 9 months to complete.  Upon completing the 9 months, we will re-evaluate whether the injections had a positive, negative or neutral impact on me.  If they worked, I will continue them and continue getting stronger.  If they don’t have any effect, I will start my journey of testing for an underlying problem or another diagnosis.

I walked in the clinic with high anxiety and fear but I left feeling reassured.  On the way home, my dad and I stopped at Einstein Bagel Bros for a Nova Lox and coffee as a treat.  I felt weakness while chewing from the injection in my middle scalene but it eventually went away.  I mentioned to my dad I felt weird numerous times, but couldn't explain why.  On the 1 hour trip home we listened to oldies and talked about the intricate details of our upcoming business trip all the while I tried staying silently positive. 

No visible injection sites but swollen

My left shoulder was injected.
It's swollen and raised from the
 injections but also from tight muscles.

I went to work for a few hours before I had to babysit.  I noticed the top of my shoulder started having spasms.  After I have physical therapy, massage therapy or injections, it normally tries to reject treatment and cramp.  However, botox is pretty potent.  By the time I arrived at babysitting it felt like someone was gripping the top of my shoulder with sharp nails.  I took deep breaths and tried to relax as much as possible.  Eventually, nerve pain carried over into my right arm and left me a little too stressed out. 

A few hours after the injections, the swelling and fatigue began.  Knowing I didn't want to spend the night alone in my apartment, I ended up having a movie night with my best friend Heidi so I could relax and give my body some time to calm down.  Nights with her are always a joy; she takes my mind off of everything and gives me a positive perspective on my situation.  We watch the most far-out-there movies possible.  It is the complete easiest way to get my mind off of my stressful life for a few hours.  

Friday morning, I woke up in pain which was expected.  I was sore, a little cranky and ready for some breakfast.  Heidi and I went to a local joint for our favorite meal, biscuits & gravy, bacon, eggs and coffee.  Upon completing breakfast, I knew the soreness wasn't going away and the sharp pains were getting worse.  I went home to my futon-now-bed in the living room to ice my neck and to stretch, but the rest of the day was a blur.  My neck felt weak.  My eyes were heavy.  I had taken Tramadol earlier in the morning but it failed to support any part of my body through the pain.  I was angry knowing my body was going to disappoint me again and get sick from another round of injections.  Episodes of Bonanza, Gunsmoke and Wonder Woman were blaring in the background of my dreams as I drifted all day feeling confined in the walls of my apartment.  The transition from day to night went unnoticed.   

Waking up Saturday morning to both of my boys at my feet was comforting.  Slowly, I sat up on my futon, only to be greeted by a pounding face and dizzy eyes.  I took a few minutes to level myself out so I could feed my cats and get more water.  My legs were wobbling as I filled up my water bottle.  I grabbed a yogurt and spoon before scuffling my way back into the living room.  Did I get hit by a train?  Did I sleep-sprint?  Why is my whole body nauseous?  I couldn't understand why I felt like this.  Soon after eating my Greek delight and taking a Tramadol, I closed my eyes only to drift in dreamland for another 2 hours.

Awakening in a cold sweat, I felt unaware of where I was.  Pain was creeping up my spine, into my head, engulfing my ears with flames and burning my eyes with poison.  I

stumbled to my medicine cabinet, only to find that I had an ample amount of muscle relaxers and nothing for nerve pain.  I grabbed Excedrin and an ice pack.  In the child's pose on my futon and ice pack on the back of my neck, I couldn't control my emotions.  I was upset I didn't feel well.  I was upset my head felt terrible.  I was upset with life and everyone that didn't have to deal with this bullshit, but immediately feeling the guilt seep in, I retracted my selfish thought.  I wanted to scream, but knowing that would only make it worse, I swallowed my frustration.  

My main frustration was at myself.  I was mad I didn't find a specialist for TOS right away instead of bouncing around doctors. I wondered if my friends with TOS have crazy off-the-wall thoughts like I do. I was mad that I didn't ask for nerve-pain medication at the last appointment.  I was mad I had to go through this.  Sick of hearing my own mind complain, I finally cried myself to sleep. 

At 10:00 p.m. I woke up startled by a phone call from Heidi.  She had just got done with work and needed some consoling herself, so I crawled from room to room collecting everything I needed to spend the night.  Thankfully, she lives 20 Mississippi's away (aka 3 blocks.)  Another movie night was in the making with lots of venting and unhealthy snacks. Before both of us knew it, we were passed out with the movie menu screen on repeat.  

Sunday morning, I instantly took Tramadol and stayed put on the couch, waiting for the spins.  Like clockwork, they hit and took me out.  I sat crying.  On my best friend's couch.  So much sharp unbearable pain.  She stared, almost like she was going to cry, unable to fix me.  She was unable to fix her broken other half.  Comforting me as much as possible, I told her I was better even though I was lying through my teeth.  I know she wouldn't have been able to leave for work had she thought otherwise.  The pain was from my ear to my arm, my neck to my tailbone, my rib cage to hip bones.  It was sharp and nasty.  It was as if I wasn't in my own body anymore.  Eventually I put my TENs Unit on just to keep my body distracted.  It only works for so long.  

I honestly think getting the injections gave me a huge flare-up.  As sickening and upsetting as that is, I'm still hoping for it to turn around.  I'm crossing my fingers that the Botox magically gives me relief, even if it's for a few weeks.  I need a break from what my body is going through; physically and mentally.