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May 25, 2006 :   What happened to me and the explanation of my health issue(s)

I am often asked how my health is, or what happened to both, or me. I doubt anyone but a couple very close friends and me know the complete story, because it is such a long and complicated one.

I am so very grateful to those who care about my health, and the trauma of what happened to me changed me forever, even towards those who would be my friends. I should say, I am changed regarding those who were my friends, those who would be friends and those who are friends. I have also changed completely in whom I love and who loves me. Lastly, I have changed my entire view of the world, and myself. I am still learning. Here, I attempt to explain the journey many saw me take, not knowing what was happening, and some quite expecting me to die. I did not die, but I came close. I thought for a very long time that I was "cursed," and now, finally, I feel I am lucky. I am getting luckier.

A summary:

When I was 14, I slid down a banister in high school, as I did everyday, and I fell 5 feet onto my head and neck. I broke my neck, gathered a severe concussion, and took myself of a tennis circuit that many expected me to take to the professional level. Of course I could have continued to play, but I did not like completing, and I wanted to dance.

I spent awhile in a hard brace, and when I saw the Ortho with my father at the end of 6 months, the doctor told my father that my neck had not healed properly. (C5,) for those who know.) My father told me that "no one is going break your back!" We left, never to return.

By about 23, I would loose the use of my legs for short periods from numbness. I was dropping things with my left hand now and again and I found it spooky. I also thought it was sort of funny, but the losing of my legs from numbness scared me. I went to the doctor then. I was a dancer, and the doctor asked me to stand on one foot, push, pull with my hands, and declared me "fine."

These symptoms continued but I gained a new one. Pain. My neck hurt. It hurt SO badly that anyone who knew me well at all knew my neck hurt me. It mysteriously hurt me and I finally ended up at an ER after some dancing, for the terrible pain. It scared me. Still, I was told that it was because of dancing, and I was told I was fine.

Next, I had SO much pain in my neck and now my left shoulder, I went to an ER crying in pain. A study at Harvard has concluded that female dancers could handle more pain than any other test subject. Not even male dancers or football players could handle the level of pain a female dancer could, so when I say it hurt, it HURT. That ER doctor knew I was a dancer. I was at the point in my career that the respect given me was because I was called "a world class dancer." Respect then for me was high and so treatment was something he thought I deserved. He told me to take 800mgs of Ibuprofen every 4 hours until the swelling in my shoulder went down.

And so I did what that doctor said. I took that Ibuprofen every four hours and kept on dancing for years. But it stopped working. Suddenly, it did not work. I cried from the pain and it was back to a doctor. This time, I was told it was stress and thus, I need a shrink. Off I went on an odyssey of treatment for what they said was "PTSD." In fact, I had pressure on my brain stem and an irregular signal to my spinal cord.

I’ll not go into the treatment I endured for my "PTSD," which of course I do have, but not to the extent to cause me pain of such a degree. Still, the shrinks kept talking, medicating, talking, medicating, and I kept dancing and crying from pain. After all, why would a young woman like myself have such terrible pain in her neck AND be such a strong dancer? It HAD to be mental, or as they say, "somatic."

And so I went, for years. My neck had almost made it impossible for me to dance about 7 or 8 years ago, but I thought, as they told me, that it "was in my head." The problem was that they keep emptying my brain and still, BIG pain! I saw shrinks in Arizona, Minnesota, New Orleans and Seattle. I went through a premiere institution for treatment for PTSD. Still, I HURT and I was not "stable," as they say!

It came to a point that if I so much as did my barre, I would suffer so that I would not be able to bear it. NOTHING helped. Narcotic pain relievers did, but I was not the sort to take those.

And one day, all was clear: I was dancing about and flew up into the air. I was in a position that was horizontal to the floor. It was like lying in the air, but 4 and ½ feet in the air! I came slamming down onto a floor with carpet over cement. I was at home, I looked up at the ceiling and I knew that I had better try to move my legs. I also knew that I should call an ambulance! I did not call anyone. I lie down on the sofa and asked my husband to put direct ice on my swelling back until it froze solid. I KNEW I was hurt, just how bad, I didn’t know.

I started to loss all function, slowly. I lost strength; the pain in my neck grew to gigantic proportions. I lie on the floor; often alone crying and crying like a maniac. I soon was too weak to walk much, or even get up. I was feeling as if I was dying.

I was dying. I was diagnosed with, in the course of about 3 months or crying in ER’s:

TMJ

Bulging Discs,

A fractured vertebrae

But not given a MRI.

All the time this was happening I was in crisis. I lived on percocet, and I tried to find out what to do next. And all this time, a friend, a very special friend who is a physician kept calling me and saying:

"Get an MRI!" Finally, a doctor who, sadly, was trying to put my neck through "rehab," with weights, and manipulation, put his hand on his hip and said: "I’ll order it, but I doubt it is anything structural!" My son and I looked at each other. We did this because we ‘knew," and his arrogance surprised us.

After the MRI, it went fast:

The doctor called, very upset and told me to "Get into a hard brace, and don’t go anywhere until I contact a surgeon." He explained that I had a disease called Cervical Stenosis, which meant that my spinal cord was being choked. It was because of scar tissue, perhaps, from my fracture, or anything, but there was NO doubt, I was in trouble, and I had a spinal cord that was being injured by a vertebrae that was hit when I fell, as well as by a disease I had for many years. This doctor told me that I was "amazing," to have this neck and to be the dancer you are and to accomplish all you have!" I thought I had no choice! All those years I saw SO many doctors, Neurologists, Orthopedic surgeons, etc… and NONE would help me! One said, for example; "My wife has this," It’s just this muscle you see?" "It’s twisted, and that hurts!" Indeed.

But now I was in danger of being a "Quad," or worse, dying. Because my neck was not stable, if I injured my cord further, it could even stop my ability to breathe!

And so, I was, as my friend said, put in the most frightening position, which was:

"Having to lay my head down on an operating table and let someone I did not know, cut my throat."

Which I did.

I had four surgeries:

One to clear out all that was attacking my cord and my nerve endings. This one also was to take out the offending vertebrae, replace it with a "donor bone," and screw it all in place with metal. I told the surgeon I was VERY allergic to metal. This was December 2003. I was told that there was also pressure on my brain stem. Uh huh.

Two was to help me live. I lay on the floor, half there, half dead, for eight months. I was dying, indeed, the metal was "buckling," and I had a neck that was about to collapse on me. It was at this time that I became more enlightened than I ever was. I KNEW I was dying and no one else thought so. It was not until I got another MRI from the surgeon that did my surgery that everyone found out how bad it was. I was scheduled for surgery the next day! The metal came out in August, 2004.

Number 3 was the result of an infection that started in my neck, a gland, after number 1. A gland in my neck was repeatedly infected and I took at least 20 rounds of antibiotics. After the first surgery, when the gland became infected, It was to be removed because it was "dead," and surrounded by scar tissue from repeated infection.

I put my neck on the operating table the third time in October, 2005. I had been infected in that gland and on antibiotic so long; the math is not worth it.

Surgery number 4, in March, 2006, the day after my birthday, the last, was done because the majority of the gland was left in my neck! When the last surgeon went into remove the largest part of the offending gland that the first surgeon just left there, he had to painstakingly cut slowly though all the scar tissue to avoid nerves and "get it all." I was told that he "had to put things back in their place," and that "everything was hacked up." He did remove all of the gland, but I had a bruise to a nerve that dropped one side of my mouth for a week or two. The gland was gone, and so I was left with only the infection.

I have been working on this infection for it’s final round since that day in March. I’m almost done, the "bump," on my neck grows very small.

And so I thank you all that have asked after me, cheered me on, and cared. I can only refer to the first statements I made when starting this account of "What Happened," to tell you how I feel.

I feel differently than I ever have. I am new, and I don’t know exactly how I feel about anything. I know that I feel vindicated. My neck WAS hurting.

But, I am left a Chronic Pain patient, with a hope of a procedure that would eliminate the need for pain medication.

I have weakness in my arms and thumbs and forefingers that I will never strengthen. It is a permanent injury, from waiting too long to be treated. I have problems carrying over 30 lbs. for any time at all. I am better off standing up and sitting down instead of dong both for too long. I have a hard time writing, and at times typing, as it involves my injured cord area. My mind is clear, for the first time in so long, I think clearly.

Yes, I can dance; I can do just about everything! But I see my doctor every month, and without my medication, I would have pain that I would beg to die rather than feel! There is, they tell me, a chance to stop that.

And this is "how I am." Thank you for reading and caring!

Annalisa

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