Our Stories

I am 39 years old and I have had at least 8 brain surgeries and 4 abdominal surgeries because of my cyst. I typically sleep 2 hours each night.

I was diagnosed in June of 1993. Before that I was symptomatic around January of 1993. I was burning from the mid thigh down and I couldn't sleep. I finally went to see a doctor because a teacher told me that I was limping. Basically I had nerve damage.

They convinced me to see a doctor. I went to the GP in Merced. He sent me to the Neurologist in Fresno and the neurologist said I had MS. My GP decided to send me in for a MRI. I was in Modesto. The doctor on call asked me if I had a recent head trauma or brain surgery.

They re did my MRI because they thought they made a mistake. My next appointment was 2 weeks away and I just thought I would go then. One of the teachers was nurse and she told me to go see my doctor. I saw her face and knew it was bad. She said "Leslie, you have to see your doctor now."

I asked the doctor for an earlier appointment. He was like "OH MY GOD". He referred me to the same doctor in Fresno. I was sitting in a room when I heard the Neurologist yelling at the doctor in Merced. He was upset that I hadn't been there sooner. My insurance company at the time didn't want me to have these tests and my doctor had bent over backwards to have the MRI done. The neurologist was also made that I had the MRIs and they were not forwarded to him. That I had a tumor not a cyst and they were totally wrong. Mind you he was the one who said MS.
I decided to get a third opinion and the Merced doctor sent me to UCSF to see Dr. Wilson. He was the top neurosurgeon at the time. Dr. Wilson re diagnosed me. He told me I should be in a wheelchair. He said I shouldn't be walking. I shouldn't be talking. He was really surprised that I was functional.

I speak two languages. I have a Masters. I am coherent. It was a surprise when I walked in "normal". The reason that I was having problems was because my midline was shifting and even though I had had my AC all my life it was starting to grow. That's why I was having symptoms now instead of having them sooner.

They gave me 20 minutes to decide if I was going to have my cyst fenestrated. I went outside to talk to my friend. I called my mom who is a surgical nurse. At that point in time I was so upset. I was worried about my hair. My friend and my mom negotiated the surgery protocol and they scheduled the surgery. I was 29 at the time.

I had my grapefruit fenestrated. I did really great for a year. I felt like there was no pain in my legs. I could finally sleep. Then in November of 94 the burning came back. Then my head started to hurt all the time. I just let it go for about a year. Then I finally went in and told my GP and he told me to have it tested. The protein count in my cyst was so high it clogged the fenestration tube.

Then they told me they were going to put in a VP shunt. In August of 96 I had a VP shunt put in. It worked well for 2 weeks and then I had reflective pain in my shoulder. Then the neurosurgeon in Modesto said oops! The tube is rubbing against your diaphragm. Then 2 weeks later they revised the shunt and cut the tube. After that I was fine.

On Halloween in 1996 I picked up one of my kids in the SDC I taught. He was kind of a violent child and we needed to just hold him and love him when he began to "freak out"and apparently he tore the tube loose. By December 9th they had determined that the tube had adhered to my organs. My principal at the time told me I was the color of death and I was not to return to work until I was better.

I drove myself to the ER and they told me I had a hernia. I was supposed to be seen by my neurosurgeon first but they didn't contact him. The ER told me to go home and see my GP. I crawled over to my NS office and his nurse saw me and called the NS at the ER and the PA came by and admitted me on the spot. At that point they found I pulled all my organs to the side and made a huge lump. On Friday the 13 of December, they cleaned out my abdomen, shortened the tube again and cleaned out the infection that had settled in.

It was strange because of the low grade fever I had runfor a year. I had off and on stiff neck, bad headaches, trouble swallowing and weakness. I complained but no one believed I was sick.

In February of 97 I checked into urgent care. I had all the signs of meningitis but I didn't know it. A friend of mine who was a home care nurse told the doctor that I was melodramatic and to give me a shot of demerol and send me home. He questioned her but in his defense, there was a huge flu going around with the same symptoms.

I woke up and worked the next week. Saturday rolled around and I drove myself back to Urgent care. I told the urgent care doctor I was in pain. He happened to be the same doctor as the week before. He told me he thought I had meningitis. He did say he worried abut me all that week. He called my GP and his partner was on call. There was an outdated spinal tap kit there at the Urgent Care and didn't dare want to use it.. He called the ER and sent me to have a spinal tap.

I think I had meningitis for about a year but it never all came together until this moment. My girlfriend got there. My doctor told me they were going to do a spinal tap and I was like "No you aren't I've got to go to work Monday."

My blood cell count was so high they thought I was going to die there. I kept arguing that I had to go to work the Monday. PLAN FOR A SUB!!!! They wouldn't let me go and it came back that I had Meningitis.

I had trouble swallowing. I had a stiff neck. I ran a low grade fever at 101 for a year. I hate going to the doctor. I was on Keflex, Vancomycin and Septmycin to kill the meningitis. I had a pic line and a central line. They kept me for 5 days and figured out they couldn't confine meand knew what kind of menigitis I had so I was not contagious. I went back to work and had treatments at 6 am I would go to work, come home and hook myself up at 5 pm for another course. By 7pm I would have to have my blood tested. My veins collapsed and to this day they can't get blood out of them worth crap. They thought I would be fine. At the end of February 97 they yanked out all the tubes out.

From March of 97 until August of 99 I had spinal taps every month to take the pressure off my head. My GP did more spinal taps on me than he had done in his whole career. In June of 99 I was doing home calls with that stupid nurse "friend" of mine that said I was melodramatic. I watched her do a chemo port into a girl that had brain cancer. I asked her if she could pull fluid out of the port. She told me they did.

In Early 99 I approached my GP and told him about the port and asked him if there was any way they could put a port into me so they could suck out the CSF for me.

"If she rejected everything else go for it" is what Dr. Wilson said. It was like nothing else was working. I always had infections. I had nothing to lose. Ever since August 15th 1999 I have had the same Ommaya Reservoir port in the side of my head which goes right into the cyst in my brain to this day. Even though I live with a constant headache when it's time to have the 75-100 ccs of CSF to be drained I feel great for about a week.

I feel like this is a guinea pig experiment though it's worked for me. Since June 30th since I haven't had insurance I have learned a lot. I pay for Vicodan and Phrenegran only and I quit taking all the other drugs. I go in on September 16th to be drained again and will be for the rest of my life. Unless for some reason science and my body cooperate.

I keep myself busy with work by organizing things. I quit taking all the drugs but Vicodan and Phrenegran in June. My friend told me I should get off all the drugs since I haven't been taking them. I have been on a wellbutrin, zonegran, effoxer, Vicodan, phrenegran, naproxen chemical cocktail. Since 99 I developed a tolerance for a number of drugs. I have taken Neurontin, dilantin and phenobarbital.

I'm a rare case. My system has a high tolerance for pain. I will eat vicodan like taking candy rather than taking opium or morphine. I can't work and be on morphine. If the state tested me for drugs now I would lose my job.

I just took a new position teaching. They asked me if I had any medical problems and I told them I have an Arachnoid Cyst. I told them that I have my problem and I handle it. I was sniffed out by the drug dogs and I told them that I have my drugs under lock and key. I told them my story and that I am still wanting to teach special ed and they are OK with it as long as no one can get to my meds. I talked to the Sheriff and told him that I lock my vicodan up and that it's not a problem. It was humiliating to be popped by the drug dog.

It was worth the 15K pay raise. I can be qualified in some areas as a disabled American but I refuse to go on disability because I know I can be a contributing member of society. I feel that I have a lot of empathy because I know what my kids are going through. I suffer everyday.

I talk to my kids about the problems I have so that they know a person with a condition can make it in the real world. I am not a special education affected person. I was lucky. I came out above normal in all areas and it didn't effect me till my 20's. I never knew that I had this thing and probably wouldn't have had it not started to grow. It has taught me to push myself farther and appreciate things more now after almost dying twice. I have always lived my life for others and to keep them out of chaos or to keep them as friends. But when they didn't support me I learned to live for myself and do things that finally made me happy and not the rest of the world.

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The Arachnoid Cyst Foundation
c/o Catherine Clay
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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!