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Thursday, July 7, 2011

Backtrack to 6/13 - Surgery and Recovery Room

5:00 AM Leave for hospital with David and Intisar, Mommy following by car.

5:30 AM Arrive at Johns Hopkins Hospital.

6:00 AM Begin getting prepped for surgery as Daddy, Ms. Dail and Sabrina arrive too.

8:30 AM Go to Operating Room (OR) by stretcher; mentally memorize OR setup before being put to sleep.
               The Anesthesiologist had already explained at this point that I would be put to sleep, turned over,
               and the surgery would be done while I'm face down.

Here's where everything gets fuzzy. I can add events from my limited memory of the remainder of this day, but I had absolutely no concept of time and very little judgement (to be trusted) at this point. I'll just give my exaggerated view of the time lapse and human interaction instead. Family, feel free to comments to fill-in additional information. I do realize that my memory of that day may leave a few gaps.

Seconds later, I awoke in a small recovery room with one glass wall facing the hallway. A nurse named Hazel (I think - a brown woman with short hair) was smiling at me. She asked me what my pain felt like on a scale of 0-10 with 0 being no pain and 10 the worst I could imagine. I said 10.

Seconds later, I woke up again, same room, same nurse, same questions. She asked if I could stay awake for a few minutes. I said, of course. My pain answer was the same: 10.

Seconds later, same thing. This time, she told me to try to stay awake. I said I would. Pain still 10. She asked me to turn over, but I explained why that would be impossible at that time. She tried unsuccessfully to convince me. She even threatened to turn me, but I warned her not to touch me.

Seconds later, same thing. Pain still at 10. This time, she told me she needed me to stay awake for a while. I asked for pain meds. She said she'd given me some, but I needed to be awake for more.

Seconds later, I awoke to the same pain! This time, Dr. Weingart was smiling beside me. He explained that it was very important that I stay awake so that they could give me a medicine pump to administer my own pain meds. I told him that I'd been awake (although that Hazel just wouldn't believe me). He also got onto the turning soapbox. I explained to him that would hurt too much. He said that I couldn't continue to lay on my incision. I promised I would turn (but didn't).

Seconds later, I awoke to Dr. W repeating himself. I asked why I couldn't have pain medicine. I told him I could probably turn if they would just give me the pain meds. He said that Hazel had been putting it in the IV, but I couldn't tell.

Seconds later, I awoke to my family standing around parroting Dr. W, something about staying awake. I wondered why they wouldn't just give me the pump. Why was I still begging for pain relief?

A few seconds after that, I awoke to Intisar reciting Qur'an, I think it was Surah Yasin.

A few seconds after that, I awoke to Sabrina standing to my left speaking in an infuriatingly soft, calm voice.

Seconds later, I awoke to Dr. Blanco parroting Dr. W again about me staying awake. Again, I reiterated that I'd basically been awake the whole time anyway. Maybe I'd dozed a bit, but I really didn't see why that would justify delaying the medicine pump any longer.

The next few seconds involved waking and sleeping as Hazel implored me to turn, intermittently giving me pain meds by IV.

Next thing I know, Dr. Blanco appeared again. He too wants me to turn. Exasperated and irritated, I told him that would be impossible. He asked me to rate my pain on a scale of 0-10. I told him 11. He wouldn't accept that as it was off the scale. I said 10. He told Hazel to give me pain medicine.

Next time he asked, I said 7 or 8. He was very excited about this answer. He turned to someone and triumphantly told them that I was now getting 20% improvement from the pain dosage, as if I'd arrived at some goal. If my voice would have cooperated, I would have screamed, "How is anything good about a 7 OR 8!" Instead, I went to sleep.

Seconds later, someone woke me up to do a test:
What is your name?
Where are you?
What is today's date?
Follow my finger.
Next came a bright light in one eye, then the other.
Lift your arms out and close your eyes.
Pull my fingers. Push them. Lift your knee and push my hands. Press the gas with your feet.

At some point, I suspect that night fell. A new nurse came and the family disappeared. She started in right away with the test and told me to expect more of them. She apologized for the "silly questions" but I was thinking of many more words for them than silly. Finally, just when I thought I might get some sleep, she brings up the turning AGAIN. I knew I'd have to turn, and I didn't want to heal wrong. It's just that I couldn't control my neck, and someone else moving it was worse than what I could imagine.

Then, she made a blessed promise. If I could turn my neck, she would give me an ice pack. She tried to help and I tried to stab her with my eyes. She called another nurse in to help. I told her I could do it myself. I first turned my legs to one side. Then, I grabbed my hair and pulled my head up until it was off the pillow. I then used my other hand to turn my chin to the other side. While I held my head up, the nurse inserted an ice pack under my neck. Then, I laid down to the cooling bliss of ice against my molten neck. I slept.

Wednesday, July 6, 2011

Chasing Chances

Some classify my decompression surgery as "elective," a choice. My Dr. assured me that my condition was not life threatening, that I needed to decide what was best for my quality of life. He did inform me that I was likely to worsen over time, but that the decision of if and when to have surgery was mine alone. Here's how bad my symptoms got: If there was even a chance that I might feel better, I had no choice but to chase it.

About two days before I first saw the Neurosurgeon, I began compiling a list of symptoms on a to-do list app for my phone. This was primarily so that I would include everything in my conversation with the doctor. However, the list continued to grow right up until I underwent surgery. Now, I'm in the process of checking off items from the list.

Here is the original list. I will update this post by striking through symptoms that have disappeared and adding the date that I noticed them gone.

  • Generalized headache beginning at the base of my skull and radiating outward
  • Neck tension/pain, often spreading to shoulders and upper back
  • Headache at base of skull from sneezing
  • Headache at base of skull from coughing
  • Headache at base of skull from yawning 7/6/11
  • Headache at base of skull from bowel strain
  • Headache at base of skull from laughing
  • Headache at base of skull from yelling
  • Headache at base of skull from looking up 6/22/11
  • Throbbing headache with sajda (head, hands, knees and feet on the floor)
  • Throbbing headache with ruku (90 degree bend hands on knees, legs standing straight) 6/17/11
  • Face ache from talking (occasional)
  • Face hurts to the touch 6/22/11
  • Fatigue
  • Insomnia
  • Sleep apnea
  • Snoring
  • Tingling/numbness in feet
  • Tingling/numbness in hands
  • Vision spots 7/8/11
  • Nausea
  • Sensitivity to light (need for shades) 6/14/11
  • Sensitivity to sound (irritation)
  • Startling easily at loud noises
  • Forgetting
  • Difficulty focusing (like reading or writing)
  • General dizziness/instability when walking
  • Feeling like I'm free falling backwards 6/14/11
  • Feeling like the room/world is spinning around me 6/14/11
  • Feeling of fullness in head
  • Ringing and/or fluttering in left ear 6/14/11
  • Momentary hearing loss in left ear 6/14/11
  • Yawning repeatedly and uncontrollably 6/14/11
  • Feeling like I need to cry for no apparent reason 6/14/11
  • Blurred vision  6/14/11