Arachnoid Cyst
My Experience
My name is Kurtis. At about 14 years of age, I developed severe chronic headaches. I'm not talking about a headache that goes away with some over the counter type med. I'm talking about pain severe enough to make a grown man cry in agony, wishing for death rather than continue in such pain. At 23, after suffering for 3 days with a headache that was unlike anything I dare describe, and at the insistance of my wife, I went to the ER. I was referred for an MRI and subsequently to a neurologist. This neurologist, even with crystal clear evidence on the MRI films, chose to tell me the headaches were, "stress related," and that I should start taking an anti-depressant. I knew that was BS and to see another neurologist, I had to obtain a referral from my family doctor.
I went to the appointment and waited nearly 40 minutes in the exam room before I decided to open the letter from the Neurologist. I was astonished to learn that I had a cyst, over 1" in diamter, in the right lateral ventrical of my brain! The Neurologist didn't tell me about. I WAS PISSED! If I have one recommendation on working with doctors it is this: If you are the least bit uncomfortable about their diagnosis or treatments, GET A SECOND OPINION. It literally saved my life. I could not have continued to live in such pain.
I saw two more neurosurgeons before I decided to go with the one who I felt was the most honest, caring and confiident. I'm glad I did. I 've had 10 years of good living thanks to the placement of a shunt and catheter.
Just after Thanksgiving 2004, I felt something 'shift' or 'pop' inside my head. I didn't say anything to family at the time so as not to cause alarm, but I quickly found myself facing some very serious health problems. Overnight I began to lose vision in my right eye(I'm already mostly blind in my left), I was slurring my speech, stumbling, losing my balance, cutting, bumping and burning myself. My ears began ringing, my hands, feet, back, knees and head all began to ache severely. I developed a twitch in my left eye that lasted 12 days, I had variable and recurring feelings of stabbing pains in neck, face and back, insensitivity to hot and cold. I would experience an electric-shock like pain from hip to foot, and from shoulder to fingertips, on my left side. I have lost almost all strength and experience fatigue very quickly. All this after working 10 hour days doing excavation work in early summer 2004. I played racquetball 3 or 4 days a week for a couple of years. I had a good run with the shunt I have.
I went to my doctor and he ordered a CT scan which showed no signs of abnormality other than the shunt and catheter already in place. Without insurance, my doctor told me just "do the best I can," otherwise, "you would waste several hundred dollars you don't have." Oh, okay, Doc. I'll just have the fam look for a burial plot tomorrow. Doctors can really piss me off sometimes. I don't blame them personally, I think it's just the way things are these days.
Over six weeks later, and out of work, I was approved for Medicaid. Thank God! With a several month wait and a less than motivated general practitioner, I ended up in the ER with a "Bad One." I wish I could do the description justice, here's an attempt... If you could imagine several large explosions going off inside of your skull continuously, simultaneously. Light, movement, smells, sounds, thoughts ... EVERY SENSATION brings about extremely intense pain. It is a relief just to get this into words at this point and I woke up with a 2+ this morning, ouch. I am not a wuss either, I lived with this pain on a regular basis for 10 years prior to surgery!
The vision in my right eye gradually returned and I'm seeing a neuro-opthamologist and soon a neurosurgeon at the University of Utah. The staff at the Moran eye center there have been great to work with. Total respect, not like other doctors who treat you like a criminal for asking for something to relieve the pain. Go ahead, tell me it's all in my head, I have the pictures to prove it!
My symptoms have included the following: Inability to sleep at night, Pain cause by inflammation, Memory, Concentation and Thinking problems, Headaches, Intracranial Hypertension (too much, cerebreal spinal fluid), Stabbing or Searing Pain in Face, Neck and Back, Easy to bruise, hard to heal, Visual disturbances (lightening, electric fish), Sensitivity to light and bad smells, Irritability, Tinnitus- Whooshing sounds due to HIP (High Intracranial Pressure), Vomiting, Nausea, Dizziness, Balance Problems, Numbness and tingling mixed with weakness of limbs, Memory problems, Tremors, Fatigue, Neck Pain, Back Pain, Sensitivity to Noise and Light, Vision Loss, Loss of Motor Control and Coordination, Slurring Speach, Aching and Sharp Pain in Joints and Extremities, Difficulty Swallowing, Throbbing Headaches with change in position or sudden movement, the list goes on...
I'm sure everything will work out, it always does. I've been blessed with a wonderful and loving wife of 14 years and four loved, treasured and handsome boys, ages 13, 10, 7 & 5 They're awesome. I Love You - Melissa, Matthew, Nathan, Jacob and Daniel.
If there is anyone who reads this that I might help in anyway, please let me know.
Respectfully, Kurtis Zobell
webmaster@australian-shepherd-rescue.org
April 2005 Neurosurgeon Report
1994-1995 CT Scan Reports
Links to Arachnoid Cyst Articles & Websites Follow:
Arachnoid Cyst Foundation... Excellent website, PLEASE Visit Every Page... Arachnoidcyst.Org
E-Medicine.com: Arachnoid Cyst: Background
UCLA Medical Center: Neurosurgery: Brain Tumor Diseases & Disorders
Informative Site on Hydrocephaly, Shunts, Brain Surgery...
Let your voice be heard ... Check Out Arachnoidcyst.net
Intercranial Pressure, Hydrocephalus, Medications, Environment, Congenital, Shunt, Catheter, Valve, Brain Surgery...
Arachnoid Cyst on RareDiseases.Org
American Chronic Pain Association
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"For something to BE, it must first be THOUGHT" Kurtis Zobell
"If you know what you want, and you can state it, the universe will move in your direction." Goethe
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