----------------------------------------------------------- New Message on Pituitary Chat
----------------------------------------------------------- From: PTResearcher2 Message 1 in Discussion I know it's been a very long time since I've posted. I've been away from the message boards for a long time. I don't know who will remember me, but I was diagnosed with a 1.6 cm non-secreting pituitary tumor in 2001. I began getting sick at least 2 years before we found the tumor on an MRI. I had quite a few symptoms and all the doctors I spoke to said that they didn't know why my pituitary tumor made me so sick. I spoke to numerous doctors around the country and consulted with many specialists. Since none of the doctors could tell me why my pituitary tumor made me so sick, and some even went so far as to say that it was just coincidental that I had a pituitary tumor and they didn't think the tumor had anything to do with my symptoms, I sought support from chat sites like this. There I found many others who suffered as I did and who were also being told the same thing. I wrote a paper and called it Cini's Pituitary Syndrome. I had come to the decision that what I had was an actual syndrome and that others suffered from it as well. I was shocked that no doctor had ever tried to write about this disorder. I never had the paper published, but I have sent it to many of my colleagues. I also sent it to Ann Klibansky, M.D. at MGH. No one seemed particularily interested in helping me get the paper published or thought that it would help them to give patients like myself a diagnosis. Even though I didn't have a cure for what ailed me, I thought it would be useful for doctors to be able to give us a diagnosis. I also believed that for those of us that became so sick with our pituitary tumors, that it was the tumors that caused this, but I couldn't tell how or why. What is also interesting, is that there are other people who do not have pituitary tumors who have symptoms similar to us. I suggested that Cini's Pituitary Syndrome was a spectrum of those who had many symptoms to those who had no symptoms at all and that you did not have to have a pituitary tumor to have the syndrome. I listed all the symptoms that we suffer from and suggested that if there were enough symptoms to consider that a patient has a diagnosis of Cini's Pituitary Syndrome, based on their symptoms alone, with or without confirmation of a pituitary tumor. After I had surgery for my pituitary tumor, my symptoms improved, but I never fully recovered. I asked many doctors if the pituitary tumor and or the surgery somehow caused damage to my brain or caused an increase pressure in the brain. No one could answer that question and nothing showed up on my MRI. I also noticed that I had many of the symptoms of a condition called Chiari, but none of my doctors believed that is what I have. Over the weekend, I have found out that you can have a condition Chiari and that it doesn't always show up on MRI. I also found out that there are only about 4 doctors in the country who can diagnose this form of Chiari and that there are many doctors who even debate if Chiari 0 is even a diagnosis. Yet, when I read about the symptoms of chiari, I have all of them: constant headache in the back of the head, headache exacerbated by sneezing and couging, valsalva induced vertigo, vertigo, dizziness, fatigue, neck and posterior occiput muscle tension, trouble swallowing, pains in extremities, gait disturbance, light sensitivity, trouble sleeping, and memory problems. I share this with you, because I am convinced now that what I have been calling Cini's Pituitary Syndrome is most likely Chiari, that does not show up on MRI. I am convinced that my pituitary tumor grew to a size that increased the pressure in my brain and led me to have all the symptoms of chiari. I beleive I still suffer from that today. I don't know if any of you are suffering as I have been but if you do, and if you ask your doctor if this is what you have, if it doesn't show up on MRI, then they will probably dismiss that you are also suffering from Chiari. None the less, I believe, that pituitary tumors can cause this condition and that Chiari is a complication of pituitary tumors. I believe that it is more common in women than in men, because, women and children have smaller skulls, smaller spaces and that the growing tumor can be more apt to cause this condition. This explains why men can have much larger tumors before they become symptomatic. I hope this helps you. The treatment for chiari is either observation or if smptoms warrant it, surgery, however, surgery is only effective in 80% of the cases. Again, I caution that if you talk to your doctors about this, 99% of doctors do not know how to diagnose chiari that does not show up on MRI. I specifically asked many of my doctors if they thought I suffered from Chiari and not one did. I hope this helps explain why some of us have so many of the same symptoms, yet so many different types of tumors. I would like to add that I have been getting treatment with a doctor who treats headaches and vertigo with prisms. The prisms do help and I am more functional because of them, but I still have a number of issues. I plan to have a consultation with one of the 4 specialists in the country who can diagnose this and see if they recommend surgery. I suspect that I will be very cautious and not rush to surgery since I can live with what I have. I'll see what they say and let you know. Sharon Cini ----------------------------------------------------------- To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. http://groups.msn.com/PituitaryChat/_emailsettings.msnw Need help? 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