Posted by Geri
on 5/1/2005, 6:50 pm
64.222.231.4
I have read over some of you guys messages and I am hopefully that I may get some insight on personal experiences with treatment options for pituitary adenomas. I am a 26 year old who was diagnosed with a pituitary macroadenoma in the fall of 2001. That October, I underwent my first surgery. It was thru my upperlip into the sinus. I had massive blood loss and a spinal fluid leak. My recovery was rough to say the least, however, my pituitary was still functioning normally. I thought I was cured. My four month MRI showed that the tumor was gone. So, as time went by my family doctor requested a MRI "just to be sure" that my current headaches were just that. Sept. 2003 my doctor called me to tell me that it had returned. I was horrified. My first surgery was aweful and my worst nightmare was coming true. I was beyond myself. Between complications and difference in patient care I had many reasons for seeking care from a new neurosurgeon and ent. So while my family doctor was looking into a new team to care for me he sent me to boston to meet with a doctor at gamma knife. During our consultation the doctor told me that he would not recommend this type of treatment for someone of my age, 25. He stated that with the side effects of radiation and my good health he recommended another surgery for my second macroadenoma. So I met with the neurosurgeon and ent my family doctor recommended. I loved everything about them. I felt very comfortable.... well??? I had my second surgery Jan of 2004. The surgery went fantastic compared to my first one. I told the doctor he really didn't remove the tumor, that it was too easy. I had no blood loss, no spinal tap, no pain medication as in my first surgery. I was up and walking the next day, unlike my first surgery were I was in ICU for 4 days. My tumor had somehow twisted and shut off it's own blood supply so it came out very easily. My only set back was that I had hypothyroidism. My next follow up MRI taken 9 months after surgery again showed a "suspicious" area that no one would say was the tumor returning. Having been in the medical field for years I was able to read the MRI and do a comparison with all my other MRI's, I knew that the tumor was back. The tumor is now around 8 mm and my surgeon is in awe. He has no explanation why it has come back for a third time. He removed all tumor cells he saw. He is now recommending a consultation with a radiation specialist. I'm now 26 and I have researched the side effects of radiation. I am very apprehensive about this treatment option, however in the past 5 years this will be my third surgery. I don't know what to do. I'm scared of blindness, of having a tumor later down the road from the radiation, I'm scared that if I elect to have another surgery that a year from now I'll be in this same scenerio. So if anyone could give me insight on their experience with radiation and their current health I would really appreciate it.. Or if anyone has had a recurring pituitary adenoma what you and your doctor have elected for treatmen. Thank you for taking time to read my story. Geri
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