This is the first time I have written about what
happened, and what I went through, after what was to be a simple office
procedure. It is a very emotional and difficult time on which to reflect. I had
symptoms of Nystagmus (involuntary eye movement), my hands were involuntarily
grasping/grabbing, and a neurologist had concerns about weakness on the left
side of my body. In 2006, I received an MRI scan, and was given a lumbar
puncture - a procedure done at an office visit to rule out MS.
I went home after the office visit, still sedated on anti-anxiety medication, and went straight to bed. When I awoke, it was to a living nightmare. I couldn't get out of bed, and was experiencing more pain than I ever had in my life.
It was at that point my life drastically changed. I had to sleep beside my mother, so I could wake her when I needed to get up. At the age of 24, I had quickly regressed to infancy, lifted from bed by a tired mother.
The pain was unbearable to the point where I couldn't walk without the assistance of crutches, often using a wheelchair when I could find one. I couldn't get up from a lying position, I even required a catheter for a period of time. Beyond my physical pain and limitations, I suffered mentally. The combination made a simple lighthearted conversion impossible. A friend I had known since kindergarten would call and say she missed me, and just wanted to talk; I remember telling her to stop calling. I could barely work, which meant my credit score went from 'amazing' to 'default' very quickly, and was brought to near financial ruin.
I forced myself to do a few four-hour shifts at work, often taking bathroom breaks to cry of pain resulting from simply the standing my job required. For the most part, I was not working because co-workers could see how dire things were, and quite honestly, I was unable to fulfill my duties.
I was enrolled in physical therapy, received injections in my groin area, wore a TENS unit, and was prescribed a cornucopia of pills, including neurological medications, muscle relaxers, pain medication, sleeping pills, as well as anxiety and depression medications. I asked the doctor how long this could last, and his answer was 5 or 15 years; he didn't know. At this point, no medication could ease my pain enough to live normally, and nothing could lift the devastation that hung over me.
Over the course of about 1.5 years, I frequented hospitals in the area when the pain was too overwhelming, or when I was unable to urinate. Adding insult to injury, I was often treated like a drug addict, receiving neither answers, nor relief.
The doctor who performed the procedure (and many neurologists in general), will tell you that what I've written here is not the result of a lumbar puncture, that it simply wouldn't happen. Well, let me tell you: it DID happen. Not only to me, but to my little brother at the age of five, when a hospital visit was needed to rule out meningitis. He was admitted to a Children's Hospital in Detroit for months, and the doctors claimed it a was mystery, and even tested him for Adrenoleukodystrophy (ALD). It wasn't until I had mine years later, that I made the connection of the lumbar puncture with the pain and inability to walk. I speculate there may be a genetic abnormality in our spines, making such a response to having a lumbar puncture a reality. This is further evidenced by a (closed) sacral dimple on my daughter's lower back at birth. She is fine, but she will never receive a spinal puncture as long as I have a say.
There was no point of 'healing' or 'recovery' since then. It has been a slow and gradual 7 years since, and I still occasionally deal with nerve pain. There are times during the year which I spend up to a week lying on my back as much as possible, just waiting for the pain to subside.
Although it is still hard to reflect on, there is an overall picture where I find strength within the entire experience. I have come so far from where I was, and so very slowly. I see life differently. The sun shines a little brighter than before. I appreciate the little things in life. I celebrate the simple things, like walking; just living life (for the most part) not in pain. Never in my life did I imagine I would be running. But here I am, and I feel like a living miracle.
I went home after the office visit, still sedated on anti-anxiety medication, and went straight to bed. When I awoke, it was to a living nightmare. I couldn't get out of bed, and was experiencing more pain than I ever had in my life.
It was at that point my life drastically changed. I had to sleep beside my mother, so I could wake her when I needed to get up. At the age of 24, I had quickly regressed to infancy, lifted from bed by a tired mother.
The pain was unbearable to the point where I couldn't walk without the assistance of crutches, often using a wheelchair when I could find one. I couldn't get up from a lying position, I even required a catheter for a period of time. Beyond my physical pain and limitations, I suffered mentally. The combination made a simple lighthearted conversion impossible. A friend I had known since kindergarten would call and say she missed me, and just wanted to talk; I remember telling her to stop calling. I could barely work, which meant my credit score went from 'amazing' to 'default' very quickly, and was brought to near financial ruin.
I forced myself to do a few four-hour shifts at work, often taking bathroom breaks to cry of pain resulting from simply the standing my job required. For the most part, I was not working because co-workers could see how dire things were, and quite honestly, I was unable to fulfill my duties.
I was enrolled in physical therapy, received injections in my groin area, wore a TENS unit, and was prescribed a cornucopia of pills, including neurological medications, muscle relaxers, pain medication, sleeping pills, as well as anxiety and depression medications. I asked the doctor how long this could last, and his answer was 5 or 15 years; he didn't know. At this point, no medication could ease my pain enough to live normally, and nothing could lift the devastation that hung over me.
Over the course of about 1.5 years, I frequented hospitals in the area when the pain was too overwhelming, or when I was unable to urinate. Adding insult to injury, I was often treated like a drug addict, receiving neither answers, nor relief.
The doctor who performed the procedure (and many neurologists in general), will tell you that what I've written here is not the result of a lumbar puncture, that it simply wouldn't happen. Well, let me tell you: it DID happen. Not only to me, but to my little brother at the age of five, when a hospital visit was needed to rule out meningitis. He was admitted to a Children's Hospital in Detroit for months, and the doctors claimed it a was mystery, and even tested him for Adrenoleukodystrophy (ALD). It wasn't until I had mine years later, that I made the connection of the lumbar puncture with the pain and inability to walk. I speculate there may be a genetic abnormality in our spines, making such a response to having a lumbar puncture a reality. This is further evidenced by a (closed) sacral dimple on my daughter's lower back at birth. She is fine, but she will never receive a spinal puncture as long as I have a say.
There was no point of 'healing' or 'recovery' since then. It has been a slow and gradual 7 years since, and I still occasionally deal with nerve pain. There are times during the year which I spend up to a week lying on my back as much as possible, just waiting for the pain to subside.
Although it is still hard to reflect on, there is an overall picture where I find strength within the entire experience. I have come so far from where I was, and so very slowly. I see life differently. The sun shines a little brighter than before. I appreciate the little things in life. I celebrate the simple things, like walking; just living life (for the most part) not in pain. Never in my life did I imagine I would be running. But here I am, and I feel like a living miracle.
