Our Stories

I am 24 years old w/a sub arachnoid cyst on my left temporal lobe. I am going to try and tell you my story without writing a novel.

After I had my son (he’s 5 now), I began having ‘migraines’. Terrible, horrible headaches accompanied by numbness. Numbness in my hands, left arm, left leg and left side of my face. I was told they were migraines. But I didn’t have the ‘aura’ that migraine sufferers have, the sensitivity to light, sound, etc. It was just a horrible pressure headache. I can remember several times wanting to slit my damn head open. Just a little cut to relieve the pressure!! Demerol became my best friend. My PCP was insistent that it was a migraine. (I don’t have him anymore!!!). Finally, my PCP’s Assistant decided maybe I needed an MRI. I thought to myself, yeah right, whatever they are going to think I am a damn nutcase b/c they aren’t going to find anything. Low and behold, she called back 3 days later, told me I had the AC, but that they were asymptomatic and could not possible be the cause of my problems. That was 5 years ago. I have been to at least 10 Neurosurgeons. All of them said the same, said they wouldn’t touch it, it’s too dangerous, yada, yada, yada.

I have passed out, had seizures, I have a terrible time concentrating, (like a damn t.v. remote in my head that I have no control over). I have managed to keep a job, I’ve had the same one for 6 years, and I just recently got hired by a director for a football team. He is an awesome boss, but very demanding. One of those ones who I can tell doesn’t like to have to repeat himself. He seems to be quite happy with me for now. ButI know I am going to forget something sometime soon. I get to work before everyone else and leave after everyone else. Just so I can make sure all my ducks are in a row, you know? I feel like I am pretty smart, I have good grammar, I write well. I read constantly. Novels, magazines, whatever! I can read so fast it blows my own mind, but sometimes, I don’t get all the info out of what I am reading. I have a terrible memory. Did I already say that? I forget my keys, purse, whatever. I just lost my cell phone yesterday. And I am trying to raise a kid??

I have met a doctor at the Houston Headache Clinic that has made the only little bit of sense so far. He says I have to treat the cyst like an organ. I have to take care of it like I need it. Feed it, nurture it, it’s a part of me. (No, he’s really not psycho). So, basically here’s what he told me to do: No boxed or canned food, ever. All fresh, all the time. No MSG, no salt, no sweet-n-low, no equal, NO CAFFFIENE, no chocolate, no pgkd. meat or cheese, basically no processed foods of any kind. No sodas, of any kind, he said stop smoking. He says that constricting the blood vessels causes less blood to go to the cyst, making the pain come on in the long run. He says I need to do everything to keep the blood vessels open and nourished. He also put me on Wellbutrin to help me stop smoking, topamax (anti-seizure) and Paxil for anxiety. When I get really stressed really quickly or nervous, the pain comes on fast and furious. Like if I am driving, and some idiot cuts me off, I get instant pain. It’s only in that spot. The spot where the cyst is. He won’t give me pain meds, though. I usually get those through ‘connections’ and I hate to admit that, but it’s true. I don’t take them all day, all the time, or anything. I just don’t understand why I can’t have a back up supply, you know?

I have several other ‘benign’ cysts. ALL on the LEFT. (????) Left femur in the bone above the knee. Left Kidney (Constant kidney and bladder infections), left hemisphere of my diaphragm, left wrist (right where my pulse point is). But they are all different; like the one in my leg is solid, my wrist is soft, kidney is solid mass, diaphragm is soft. So what gives?

I don’t know, I just thought I’d share my story. I’d try anything once. Even if it is surgery!!!!

Continuation of my story:
It is now March 8, 2004. I met a wonderful neurosurgeon by the name of Doctor Norman Torres in July of 2003. After listening to my story and reviewing my thousands of CT and MRI Scans, he determined that I would, in fact, need surgery (you think??!!). Now this was at the end of July.

I guess around the 25th. On August 13, 2003, Dr. Torres performed a fenestration on my cyst. This was on a Wednesday. I spent Wednesday and Thursday in ICU. I was released Saturday morning. FOUR days after a craniotomy!! I felt great, while there was some pain, I am not going to lie to you, Dr. Torres made sure I was comfortable going home. While they did shave 1/2 of head and I did have 40 staples, I wouldn't trade the benefits for anything. Or so I thought.

In mid-October I came down with a headache. And I really think we need to come up with a new term for what we experience. Arac-ache?? Anyways, shortly thereafter, I had a mild seizure and the left side of my face became numb. I don't remember much after that. I remember waking up in a hospital 11 hours later. Despite Dr. Torres suggestion that I have another CT Scan, I refused. I wanted to wait it out. While I am overall pleased with him as a doctor, brain surgery is not something you want to do twice. In two months.

Fast forward to Thanksgiving Day. Came down with another headache, EMS was rushed to my home b/c my husband thought I was having a seizure. Paramedics described my symptoms as that of a very mild stroke. Had a CT performed that day. A week later, Dr. Torres gave me news that I didn't really want to hear. The cyst had reformed itself and was not quite, but almost double the size it was before I even had surgery.

Fast forward to December 26, 2003. (Yes, the day after Christmas). Went in at 530 a.m. The surgery would require a shunt to be placed near the cyst and drain into my stomach cavity. Supposed to take 3.5 hours. Ended up taking 6.5 hours. Some minor complications, I apparently stopped breathing and had to be resuscitated or something like that....

Stayed in ICU for three days. Dr. Torres was very good about explaining everything to me. I know where the shunt is and where all the tubing goes. He said it was really trial and error on what I could or could not eat. Which is turned out to be a good thing, I've lost 27 lbs since December. Soft Drinks, greasy food & spicy food all irritate my stomach terribly. BUT NO HEADACHES!! I have not even felt dizzy, lightheaded, nothing. The actual site of the shunt itself is quite tender still, I can't sleep on that side and I have to be careful with the blow dryer, just little stuff. I can every once in a while feel where the tube is near my collar bone, it's a little sharp pain if I turn my head wrong or suddenly. There is a definite presence in my stomach. I know that I can feel it and it's not my imagination. It just kinda 'floats' along in there. And every once in a while, I have some pretty sharp abdominal pains. Enough to scare me to the ER twice, but once it settled, all was well.

All in all, I am grateful to have found a compassionate doctor. A doctor can be your number one enemy, or your number one ally. I wish you all the best of luck. While I may not be able to return phone calls all that promptly (Catherine can testify to that) I am always available by email. I would definitely like to hear from those of you that have shunts.....

Good Luck & God Bless to you all,
Courtney

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DOCTORS

The Arachnoid Cyst Foundation
c/o Catherine Clay
PO Box 66820
Los Angeles, Ca 90066
1-(800)-493-5022
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This site was designed and is maintained by Miss Catherine Clay She has recently had a child and is not the best communicator at this time. Please be patient and call or e-mail back!