All good things come to an end so the saying goes.  With that I bid you adieu. This is my last enry.

As long as I live, I will have complications from having surgeries on my brainstem.  Sure, I’ve given up a lot, but I have gained a lot, too.  For instance, I am alive and have witnessed the long term commitment of my husband; watched my grandchildren develop and try to find their place in this world; see my sons excel at being great husbands, fathers, providers, and men.  For all this I am grateful.

Beth Grigsby

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Everyone has a brainstem.  It has nothing to do with intelligence but a lot to do switch everything else.   The brainstem:  In vertebrate anatomy the brainstem (or brain stem) is posterior part of the brain, adjoining and structurally continuous with the spinal cord.

 

The brain stem provides the main motor and sensory innervation to the face and neck via the cranial nerves. Though small, this is an extremely important part of the brain as the nerve connections of the motor and sensory systems from the main part of the brain to the rest of the body pass through the brain stem. This includes the corticospinal tract (motore), the posterior column-medial lemniscus pathway (fine touch, vibration sensation and proprioception) and the spinothalamic tract (pain, temperature, itch and crude touch)

The brain stem also plays an important role in the regulation of cardiac and respiratory function. It also regulates the central nervous system, and is pivotal in maintaining consciousness and regulating the sleep cycle. The brain stem has many basic functions including heart rate, breathing, sleeping and eating. It is usually described as including the medulla oblongata (myelencephalon), pons (part of metencephalon), and midbrain (mesencephalon).

Source: Wikipedia

Once a week we go to physical therapy (PT), it follows on the heels of other PT I’ve had.  We venture north to a place in Minneapolis called Courage Center.  It Is a place to go for people like me.   Their mission is:  ” to empower people with disabilities realize their  full potential in every aspect of life.  We are guided by a vision that, one day, all people will live, work, learn and play in a community based on abilities not disabilities.”

I  can’t  recommend the Courage Center enough. They help all kinds of people.   For me, it’s a humbling experience.  To see people there who breathe through a tube as well as talk, and more is heart-wrentching.  Courage Center is up to the challenge and performs admirably.

The therapist and I go through exercises to strengthen the muscles in my back.  We are  also working on my posture.  A lot of it comes from my pons, where I had my second surgery.  My core muscles are in good condition so we work primarily on the back.

I feel it is important to continue exercising at home, after PT.  Not just at PT.  So, I have a regular program that mimics PT and takes me about 20 minutes everyday.  Even if you are in good health I urge you to get some form of exercise.

Source: Courage Center literature

Since I had surgery on The Pons area of my brainstem it is a very familiar place.  I wanted Wikipedia’s take, too,  Here it is:

The pons is a structure located on the brain stem, named after the Latin word for the 16th-century Italian anatomist and surgeon Costanzo Varolio (pons Varolii).    It is cranial to the medulla oblongata, caudal to the midbrain, and ventral to the cerebellum. In humans and other bipeds this means it is above the medulla, below the midbrain, and anterior to the cerebellum. This white matter includes tracts that conduct signals from the cerebrum down to the cerebellum and medulla, and tracts that carry the sensory signals up into the thalamus.

The pons measures about 2.5 cm in length. Most of it appears as a broad anterior bulge rostral to the medulla. Posteriorly, it consists mainly of two pairs of thick stalks called cerebellar peduncles[disambiguation needed]. They connect the cerebellum to the pons and midbrain.

The pons contains nuclei that relay signals from the forebrain to the cerebellum, along with nuclei that deal primarily with sleep, respiration, swallowing, bladder control, hearing, equilibrium, taste, eye movement, facial expressions, facial sensation, and posture,

Within the pons is the pneumotaxic center, a nucleus in the pons that regulates the change from inspiration to expiration.

The pons is implicated in sleep paralysis, and also plays a role in generating dreams.

 

     We were walking the neighborhood.  He on foot, I on my electric wheelchair, when Jeff looked and saw a woman.  He called to her to get her attention.  He had noticed the recumbent bicycle in her garage.  We wanted to try one to see if I could do it.  After a little discussion and trying, low and behold, I could.

It turns out that she wanted to sell it, she would also let us use it for a week to try it out.  We took her up on her offer and bought it from her after a few days.  So far, it has done well.  Jeff straps me in, and off we go.

I haven’t had cardiovascular exercise for years.  Bicycle riding is great.  When I was normal, I loved riding.   Since my last surgery, I had to give that up since I have no balance.  That’s why a tandem, recumbent bicycle works so well for me. No balance is required.  I can’t tell you how wonderful the wind feels and to have a sense of freedom is almost overwhelming.

     Last week, there was a cancellation in the appointments of the neuro opthmogist.  We were offered the slot and took it.  I am concerned about my right eyelid closing and hoped the specialist could suggest a course of treatment to aid me, other than surgery.

     We waited our turn in a long, L-shaped waiting room, typical of most, with the receptionist tucked neatly behind her desk.  Before long, my name was called, and we went in.

     No matter what kind of doctors we see, I am always nervous. I think it has to do with my mortality, which I don’t like to think about.

     To make a long story short, here are the results of our visit:

     There is, as we suspected, nothing we can do.  As far as my right eye is concerned, nature is doing its thing by closing. It is helping me with my double vision.  Right now I only use one eye to see.  The right lens of my glasses is etched so I cannot see using that eye. It makes seeing impossible, thus, one has to use the other eye.

     Then, we talked about that eye being firmly in the far corner of my right eye.  Apparently, I have damage to my optical nerve.  Any surgery, which I don’t want, would result in a short-term fix.   Eventually, the right eye would drift back to the corner, the long-term position.

     We left, and I was downhearted. Oh well, so it goes.

     Thank you for giving me this opportunity to share my AVM experiences with you.  It was very helpful.  Getting over this will take years, if ever, and every year is better.  The challenges remain, and continue to be a struggle.  I met many good people along the way and saw extra goodness in others.  I am very grateful.