Central Pain Syndrome

This photo was taken not long after my first brain tumor surgery.

This photo was taken not long after my first brain tumor surgery.

Having a brain tumor was the last thing on my mind (no pun intended) as I dealt with many symptoms leading up to that diagnosis. Apparently it was for the doctors too as they never entertained the thought even after carefully describing my symptoms 3 years earlier than my diagnosis. At least the initial doctor confessed he had “missed” it. I hold no animosity as a doctor that can be apologetic is better than the one who is an ass hole. You all know the type if you have had much medical treatment.
Over two years have gone by since my brain tumor was removed. In fact it is time for my annual MRI soon. I will keep you posted on the results. One of my most lasting and chronic problems I seem to present with these days is called central pain syndrome. It is one of several issues I have going on, but this one is tricky. Treatment for this is difficult. In fact the treatment can be worse than the pain. There is no cure. I hope to share more with you all as I can. I have some tough days and my focus is limited when I do not feel good. I take each moment and am thankful when I am not hurting.
I wanted to share with my readers a very important thing about the brain. Our brain is a vascular organ. If you can imagine your brain as a river with many creeks running through with purposeful directions than you have an idea how important all the blood vessels are in our head. No one knows for sure the cause and effect of certain disease processes that coexist and what may have to happen first for another disorder to occur. Much of medicine is a discovery just waiting to happen. When I had my brain tumor removed, I had a procedure called an embolectomy first than my crainiotomy the next day. It was soon after the embolectomy and being sent to the ICU that I had symptoms like a stroke patient. All the doctors like to deny that the cause of the stroke may have happened on their dime. No one knows for sure, but being a relatively young person ( ok I was in my 40’s when this happened) the most common cause of strokes is disease of the arteries in the brain. We all have heard of problems too that all of us can try to tame. One last thing readers, please work hard on those things you can change with a good doctor helping you: high blood pressure, high cholesterol, and physical inactivity.

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23 thoughts on “Central Pain Syndrome

  1. A.M.B.

    I am sorry you’ve been in so much pain, and I’m sorry your doctor “missed” the correct diagnosis. I can identify with your words: “At least that doctor confessed he had “missed” it. I hold no animosity as a doctor that can be apologetic is better than the one who is an ass hole.” I had an a-hole OB who misdiagnosed my preterm labor (which resulted in the birth of my twins 14 weeks too early without a full course of betamethasone shots). He never said he was sorry. I still see him on the street, as I work close to the hospital where I delivered, and I wonder if I would hate him as much as I still do after 5 years if he had simply apologized. Often, victims of medical malpractice want nothing more than an apology. Medical practitioners are reluctant to do that because they don’t want to “admit” malpractice. I think they would be less likely to be sued if their patients didn’t hate them so much. An apology is the first step.

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    1. alesiablogs Post author

      Mrs. P, thank you. I am afraid so many do not understand this. I was recently reading in a neurology research journal that there is a stroke every 40 seconds and kills more than 137,000 people/year. Even though men have more strokes, it is likely women will die from their stroke! The good news is that new advances are showing the brain can compensate and rehabilitate itself and regain some function lost due to stroke. This is good news through all the bad facts.

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  2. Jane Fritz

    Alesia, you have a teaching moment in each of your posts, regardless of the pain – or joy – you are sharing. Thank you for each one of them. Needless to say, best wishes are being sent your way.

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    1. alesiablogs Post author

      Jane,
      Thank you for your comment this morning. I had thoughts of not sharing what I went through, but then I thought if someone can see that a nurse can be misguided in the best treatment plan for herself –how much more the individual off the street with no medical knowledge what so ever.

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  3. Patti

    Hoping your MRI went well, alesia!
    I empathize you’re having CPS – it is a horrific & unimaginable neurological condition.
    Hopefully you have a good neuro to work with you on meds that may help offer relief.
    My ‘condensed’ CPS experience can be found on You Tube, beginning with, “A Day in the Life of Central Pain Syndrome.”
    Best wishes to you!

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  4. Pingback: Doctor Appointment | alesiablogs

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