Blog #1: A Life with Nerves

For my first English 102 blog, I’d like to write about something that is rather personal.

About 6 hours ago, I left the operating room feeling like an entirely different person and I can’t seem to stop thinking about it! I just had a life changing procedure done and I feel like learning more about my procedure by researching and writing about it!

But first, for a little background…

For the past 19 years of my life I have lived with a chronic pain in my left shoulder blade. This chronic pain has, sadly, become part of me and has caused daily migraines and complications throughout my entire life. 5 years ago, I started having seizures and I lost mobility of my arms and legs for a long time. I felt completely overwhelmed by my pain and  I was void of any hope that I might ever lead a normal life.

I spent my first few years of high school attempting to attend 3 days a week. Some weeks I didn’t go to school at all. And eventually, I started a home school program through Seattle Children’s Hospital. I lived in the Seattle Children’s Hospital for a month for comprehensive treatment. I learned that I had very severe CHRONIC REGIONAL PAIN SYNDROME WITH SEIZURES caused by a nerve plexus in my left shoulder blade. I was forced to complete over 8 hours a day of rigorous physical “boot camp” in attempt to override my nerve pain signals. In reality, all that happened was that I became very, very ill.

After years of inpatient and outpatient hospital treatments for my daily pain, in 2011, my seizures stopped when I found the right medication mix. I had tried 43 different medication combinations over those 3 years. Unfortunately, my left shoulder blade nerve pain did not cease its relentless torment.

After 2 years of using the medication that helped my seizures, I’ve found that I can live a reasonably happy life. However, I still can’t be around any bright lights, flashing lights, beeping noises, or have anything NEAR my left shoulder because of the terrible pain. I also have to close my eyes and count to mentally prepare for any shifts in sensory intake because I’m always nauseous. And aside from all that, my new husband and I can’t start a family while this toxic drug continues to control my body because it creates an unsafe environment for a fetus.

In other words, the medicine was a place holder while I became stable enough to have procedures done.

Today, I had a STELLATE GANGLION NERVE BLOCK procedure done through my neck.

I’ve been contemplating having a Stellate Ganglion Nerve Block put in for many years now. But my mother always complained over the complications. My mother has always felt that medications offer a comfort blanket of sorts.

And to be honest, in some ways she’s right. Upon my research, I’ve learned that the risks associated with Stellate Ganglion Nerve Blocks include spinal block, epidural block, and possible injection of anesthetic and medication into blood vessels and surrounding organs (according to RSDHope.org). Also, my doctor, who performed the procedure, alerted me that often times people experience temporary paralysis of their vocal chords and befall Horner’s Syndrome. Horner’s Syndrome causes your eyelids and other facial features to droop.

But there are benefits too. When you experience pain in your Sympathetic Nervous System that plays on a loop, like mine does, a nerve block can be a God send. “A Stellate Ganglion Nerve Block is an injection of local anesthetic in the ‘sympathetic nerve tissue’ – the nerves which are a part of the Sympathetic Nervous System. The nerves are located on either side of the voice box, in the neck” (RSDHope.org). When the anesthetic calms your angry nerves, you get a moment of rest from the pain.

Because this is my first time having an injection done, the doctor started off small with only anesthetic. My nerves were calmed for several hours. Next week, when the doctor does another nerve block for me, she will add some stronger medication; every block from now on will have a little bit more medication than the last time. Eventually, I will only need injections every 3 months!

Right after having the anesthetic injected into my nerves, I felt pain free for the first time EVER. Even a few hours after the procedure I felt pretty darn good. Sadly, now that we are 8 hours after my procedure, I’m experiencing pain again. I can’t wait to have another LONGER LASTING INJECTION!

It takes courage trying something new. I know that everyone has that one thing that they’re AFRAID to try. Maybe someone told you it wouldn’t work, or maybe you’re just too scared.

But maybe, just maybe your situation turns out like mine. Where you get to experience life nerve pain free for the first time.

I know it’s risky, but finding a pain free life, for me, is worth the risk.

7.12.13.2Here’s a picture of my battle scars from my procedure today!

7.12.13.1This is my husband supporting me today after my procedure.

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9 thoughts on “Blog #1: A Life with Nerves

  1. Oh my, that is terrible! There is a new chronic and persistent pain treatment that I read about recently that involves a toxin from a certain plant (forgive me I can’t remember the name) which is injected near the damaged area that prevents the nerves from ever sending pain signals again. The long term effects of this can be pretty bad as you’ll never be able to tell if you do damage to that area, but in your case it seems as though the pros may outweigh the cons. I hope everything works out well with the new treatment. Isn’t modern medicine great?

  2. Wow! Thank you for sharing such an intimate experience. I can only imagine what it would be like to have to deal with such terrible chronic pain. Were you scared to have the procedure done? to have surgery so close to my neck and head would be terrifying. How wonderful was that moment when you didn’t have your pain, though?! It is incredibly amazing what is possible in modern medicine. My dad had a liver transplant almost three years ago. It may not have been my own personal experience, but that was an amazing thing to witness nonetheless. Do I understand this correctly that they graduate increase the dose with ever treatment? and each larger dose is effective for a longer duration of time than the last? That is pretty amazing that it’s possible to block chronic pain, and that its possible to do for an extended amount of time. Because of such amazing experiences, I considered entering the medical field. I thought it would be so wonderful to have a hand in these modern miracles.

    I wonder, if you may be easily swayed by a bias on this topic? Maybe consider a question related to the procedure, or a question related to a similar topic that is all new/ completely unbiased? Then again I do believe it is possible to remove yourself in a way to avoid a preconceived opinion affecting your research.

    Good luck with your future treatments and English 102!
    Alyssa

    1. Thanks for your thoughts Alyssa! I’m not planning on writing my paper on the nerve treatments, but if I did, I would definitely follow your advice and write about the specific procedure.
      Also, you are correct! Every two weeks I’ll be having this procedure done again and again until it stops hurting for three months! I go in again on Thursday the 25th!

      ❤ Siarra

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