My name is Lisa Thurston. I am almost 40 (In exactly one month I will turn 40). The first time I ever heard of arachnoid cysts was about 3 years ago. My daughter was about 13. She was having very bad migraines to the point of passing out. The doctors did a CT and MRI and found an arachnoid cyst. Of course we went to a neurosurgeon immediately and he said.."she has had it since birth, it's in a "good" spot, just leave it alone". Her cyst is on the side of her brain. I had my sister in law who is a nurse come with me to the appointment and also later talked to our family doctor and all the doctors said " leave it alone".. So we did. During the MRI they found that she need sinus surgery though and thought that was more the cause of the headaches. So we did the surgery and she doesn't have many migraines anymore. Thank you God!
Now here we are several years later. I have had bad headaches and frequent migraines my entire life. My mom had them, my sister has them so the doctors in the past just said "they are hereditary" and we treated them as needed. Well in June I started getting horrible, non stop, day after day headaches. I was going through a trial in court through work at the time so I thought they were stress related. Well two months later the headaches were getting worse and worse. The trial was long over and I had nothing else to blame them on. I finally went to the doctor after 9 weeks on horrible pain. They scheduled a CT and MRI and it took weeks to get in. Meanwhile I suffered every day. The tests showed an arachnoid cyst that is 2.6 cm X 2.8 cm. at the base of my brain. It appears to be pressing on my cerebellum and brain stem. I know that compared to other peoples cysts this is rather small. The position however is not good. The doctor said I needed to consult a neurosurgeon and neurologist and said they would set the appointments up. Well the earliest they could set up the surgeon was September 14th.. Remember I first went to the doctor the first week of August. They gave me nothing for pain and said that they would call me. Well finally last Monday after spending Sunday night laying on my bathroom floor crying in pain and throwing up from the nausea I decided it was time to go to the Dr. and beg for drugs for the pain. My doctor hadn't seen me in about 6 months when I was in for a hip fracture because I had seen the NP when I went in in August. He took one look at me and just kept saying "OH MY GOD, OH MY GOD, OH MY GOD!" He knows me well and knows that I simply don't go to the Dr. unless I am in horrible pain and have been for some time. He couldn't believe the sight of me. Not more normal bubbly self with a smile and a pleasant spirit. He instantly gave me a shot of demurral and prescribed Ultram for the pain and said he would personally call the surgeon to see if he could get me in sooner. My first thought was "Why the hell didn't you do that in the first place". The next day I got a call at work that said if I could be at the surgeons in 45 minutes with my films they would see me. I ran to the office, got my films and went to the surgeons. My best friend who was also my college roommate met me there. She is especially one to take to these appointments because she has had brain surgery for chiari & syringomyelia. She knows the brain like no other normal person and knows the questions to ask and knows what to look for in a doctor. Besides, she has seen be go from someone who could exercise 5 days a week and keep it all together to me now who struggles just to go to work. Well the neurosurgeon said that he feels that the spinal fluid is being blocked and that he feels surgery may be necessary but first wants me to see a neurologist (which I have been trying to get into for a month already) and he wants to do a MRI with contrast and a spinal fluid flow test. He said his staff would schedule those right away. This was last Tuesday I believe. Well he forgot to mention his person that schedules things was on vacation until yesterday which was 8 days later. I called her yesterday to see if anything had been scheduled and she said they had to first send office notes to the insurance company to get approval for the tests and that she also had to make sure the neurologist would accept my insurance because he is a private pay Dr. She assured me she would call me back as soon as this was all done. I reminded her that I am leaving for South Carolina 9/16 and was hoping to have the test and Dr. appointment done before then. I'm thinking that this in not going to happen.
So basically, I sit and I wait with the pain getting worse and my life as I know it falling apart.
Yesterday was one of the worst days. It was a type of pain I had never experienced...it was like my head and neck were on fire from the inside out. Even my eye sockets hurt. The darvacet didn't touch the pain.. I was so sick to my stomach and dizzy that I couldn't stand it. By the time I went home I was in tears and couldn't stand the light or sound or human contact at all.
I will attempt to list the symptoms that I have. I don't know what is associated with the cyst or what is coincidence but here I go:
-Horrible headaches that feel like a cross between the worse sinus infection ever and the worse migraine imaginable.
-Terrible neck pain
-Dizzy most of the time
-Poor balance ( I have taken a few nasty falls lately)
-Confusion, very hard to focus
-Burning sensation in my head and neck (this just started yesterday)
-Blurred vision especially distance
-Pain in my joints
-Shooting pain in my legs
-Irritable (more than normal)
-Very emotional to the point of feeling like I'm going to cry at the drop of a hat
-Extreme weight gain
-Tingling in my left side of my face, hand and foot (just started yesterday)
So, could someone please tell me....am I going crazy or does any of this have to do with my cyst.
I know this is a very long winded email and I apologize but I don't know any way to abbreviate this at all.
Thanks for listening..