Hello, my name is Jan. I was first diagnosed in May of 2005. But here is the kicker…I wasn’t diagnosed. I went into the ER for a crippling migraine headache. They did a CT scan of my head and it revealed 3 cysts. Two of them were reported in the radiologists report, the third was not. The two that were reported to the ER doctor were totally dismissed and not reported to me. The attending doctor gave me IV hydromorphone, and sent me on my merry way. Through the year I started experiencing profound exhaustion, crippling headaches that in turn created nausea and vomiting, vertigo, loss of balance that caused me to fall down the stairs three times now, short term memory loss, loss of concentration, mood swings and irritability, reduced libido, burning sensation in the brain, visual disturbances, disorientation, staring seizures, general dyspraxia, dysphasia, and an ongoing list of other things uncharacteristic for a normal me.
I listed as much as I can so that as much could be documented for what ever purpose, may it be research or strength in numbers for symptoms of AC sufferers.
I recently decided to see my primary care physician due to worsening headaches and symptoms alike. He asked if I had any recent films of my brain, and refered me to a neurologist. I work as an RN (registered nurse) on a neural ICU in our local hospital, so I figured I could look up the report on my previous CT scan and have it ready for the neurologist. I couldn’t believe what I read when I noticed that they reported the existence of the two cysts in my brain. When the Neurosurgeons started making their rounds on my floor, I waited for the best one I knew by reputation and asked him to please review my film and report. Needless to say, he was shocked to read the report, but mostly because after seeing my films, he noticed a third cyst that the radiologists missed and failed to report. He immediately took me on as a patient, wrote me a script on the spot for an EEG and MRI. I had the tests done immediately. When I went into work 2 days after the tests were done, I looked up my results on the computer at work. The radiologists reported three cysts, as well as their very defensive opinion. This was quite obviously their way of trying to cover up the fact that they fucked up the first time. The radiologist was also kind enough to write that he didn’t think that these cysts were any cause of the symptoms I am experiencing; they were not blocking any spinal fluids in the ventricles (I have a cysts bilaterally in the 3rd and 4th ventricles). Incidentally, I have a sister who has a pineal cyst and cavernous hemangioma in the middle of her spine that have left her debilitating symptoms including MS, Fibromyalgia, Syringolmyalgia, and other symptoms similar to Catherines. I have another sister who needs an MRI, as she has symptoms similar symptoms to mine for the past 2 years which are worsening as well.
Through out my life, I have had extensive medical problems which may have been in relation to these cysts to include, Fibromyalgia, Von Willabrands Disease (hemophilia in women), I am allergic to every antibiotic on the market, spinal weakening (pregnancy was the worst), and Reanuds disease. As you can see, surgery is almost impossible, because I could not only bleed to death, but if I get an infection, I am really fucked because I cannot take antibiotics without going into anaphylactic shock. Sound like fun?
The thing that pisses me off the worst, is that my 3 year old son has Juvenile Rheumatoid Arthritis since 4 months old, my 2 year old daughter is slightly autistic, and I am sure that when I bring this up to their pediatrician that the response is going to be the same; its no big deal, or they will out grow it. My 3 year old son is at the age were he can convey his symptoms to me verbally now, and he has a lot of the same complaints that I have. He has extremely high fevers that come from no where, staring seizures, 3 grand mauls (the pediatrician thinks those were a reaction to the pertussis vaccination), and a monster that lives in his head (pounding headaches and dizziness). Today is March 20, 2006. I am seeing the neurosurgeon on Wednesday for the first time since my tests have been done. I can only hope that he takes this as serious as we do. More to come after Wednesday.
Wednesday came and went. She had a lumbar puncture done to check her CSF flow which came back "normal" which was BS. The NS said her ventricles were "normal". I hope she finds another doctor who knows what he is talking about.
Tragically Jan has 3 cysts in her brain and they didn't scan her spine or check her for Syringomyelia. There are too many people diagnosed with Syringo these days. We are posting on arachnoidcyst.net for the most part. Please join us there.