Saturday, March 15, 2008

How I Became the HIpCrip (Part 1) -- The Early Years

A profound thing has happened -- I met another astrocytoma survivor. We seem to have a lot in dommon, so she has requested that I create a summary of what's made me me. It's something I've been meaning to do for a long time now anyway. So WhiteAngel, this is for you. Thanks for being my motivator.

Additional parts will be posted as I complete them.

April 1975 -- Developed a stiff neck. Diagnosed with scoliosis and hemiatrophy (one side of the body being significantly smaller than the other). I was 12 years old and just finishing the sixth grade.

June 1975 -- Started vomiting and losing weight. Neck was so bad I had to sleep sitting up. Put on muscle relaxers and over-the-door traction, and a lift is added to my right shoe to make up a 1.5” difference in the length of my legs.

September 1975 -- Stiff neck getting better, but vomiting and weight loss getting worse. Have lost 25 percent of my body weight at this time.

February 1976 -- After orthopedic surgeons and neurologists fail to find anything, diagnosed with anorexia nervosa and sent to a psychiatrist. Placed on Mellaril, an antipsychotic medication. Not sure why any sane person would prescribe someone who is totally lethargic and unable to move about something that makes them lethargic. But I guess it would make sense to someone who also thinks that a girl who is throwing up against her will and not doing anything to try to lose weight (especially exercise) is anorexic just because she’s 12 and a high achiever who happens to vomit every day.

1975-1976 (Various times) -- Hospitalized for dehydration. Also suffered from drastic vision changes (was almost placed into bifocals as my first pair of glasses) that resolved themselves spontaneously.

February 1977 -- Vomiting has ceased, and have gained a healthy amount of weight. Symptom free -- visits to psychiatrist end and I am taken off Melarill.

May 1977 -- Started to lose strength and control of both hands. By July, friends are calling me “Wrists” because my hands are curled into fists that cannot be opened. Back to sleeping sitting up.

August 1977 -- Taken to a new psychiatrist, who recognizes that the problems are definitely physical is nature, not mental or emotional. Referred to neurologist, who conducts an electromylogram (EMG), a nerve conduction test in which needles are inserted into the muscles of the hands and arms. The muscles are then stimulated electronically to see if the nerve damage is local or based in the spinal cord. Results show my nerve damage is spinal cord based.

October 1977– A myelogram (a precursor to MRIs in which contrast dye is injected into the fluid around the spinal cord to check for blockages) shows a large “mass” in my cervical and thoracic spinal cord. At the time, doctors believe it is a cyst. Surgery, which includes a laminectomy of the affected vertebrae, reveals it is really a malignant tumor called an Astrocytoma Grade II-III, and extends from C5-6 to T4. There are two blood-filled cysts attached to the tumor -- the one at the top is what caused the stiff neck, and the one at the bottom caused me to lose the use of my hands. Doctors succeed in removing 70 percent of the tumor during a 14 hour surgery. I spend less than a day in Intensive Care, and walk out of the hospital five days post-op.

November-December 1977 -- Treated with 6000 rads of radiation. Treatments run Monday through Friday for six weeks. Lost my voice, had a horrible sore throat, and suffered from bad “sunburn” on my throat.

September 1978 -- the tumor is back, as evidenced by weakness in my legs and profuse sweating without exertion. I am forced to leave school at the beginning of my sophomore year while the diagnostics start again. At least this time, there’s no one who is even thinking that a psychiatrist needs to be consulted.

October 1978 – Another myelogram, laminectomy, and excision of the Astrocytoma Grade II-III. This time, the tumor has grown up toward my brain, and now extends from C2 to C6-7. The 15 hour surgery leaves me paralyzed from the neck down for two weeks. I spend nine days in intensive care. My right arm and left leg have no feeling, but my left arm and right leg are so hypersensitive that a teardrop or puff of air feel like butcher knives are being plunged into me. I suffer from a bad bout of fecal impaction because no one is watching my bowel function properly. I suffer from morphine induced hallucinations about neon signs flashing “DEATH” and smothering when thousands of lizards stand on a large plastic sheet and press it against my face and body so I can no longer move or breathe.

After 13 days, I lay in the dark (my mom next to me on her cot in my hospital room) and I talk out loud, telling my body and God that I just can’t make it anymore -- I am too tired to keep fighting. My mother can’t even hold my hand because it hurts to much to be touched on the one side and I can’t feel it on the other, so she instead lightly scratches my head, a move that can calm me and comfort me almost instantly to this day. After begging for help to get me though this, I awake the next day to discover that I have finally regained some movement -- I can extend the middle finger of my right hand. I take great pride in showing off my new trick to as many people as I can!

Six months of PT and OT get me back walking again. I never regained feeling in my right arm and had, but the hypersensitivity in my left arm and right leg, and hypersensitivity to noise, calm down enough so that I can function without taking Quaaludes, valium, and two other downers I needed to be pain free. Am pretty sure Mom and me flushed part of my college education down the toilet when we got rid of all of those drugs. Bet there were some pretty stoned frogs out there in the eco system for a while, though. I return to school FT in April, 1979 and graduate 23rd out of 326 in 1981.


WhiteAngel said...

Hi HP,
you have certainly been through a lot yourself, you are only few years older than myself...ur surgery was 7 years after would think with scoliosis, stiff neck and loosing all that weight, that there was something else going on...your tumor is in a similar position as mine..are you having any long term effect from the radiation? anyway thanks for sharing you journey, hopefully we might help & light

The HipCrip said...


This is just the beginning of my medical history. There are a lot more surgeries and diagnoses to come, including a third surgery for the astrocytoma. I'm working on completing that part of the story now.

My only real lasting damage from the radiation is that it's speeding up the death of my remaining SC nerves. Since there's only about 10 percent of the cord left in the cervical spine, there just aren't that many nerve cells left. The cells that are there have been permanently weakened by the radiation, and are also being pulled taut by some tethering that's occurred.

My neurosurgeon believes this is why I'm experiencing such a rapid decline in function and have ever increasing levels of pain and spasticity.

Thank you for the note -- I look forward to talking in greater depth once the rest of my story is up for you to see. From what I read about you, that's where our experiences really start sounding alike.