----------------------------------------------------------- New Message on Pituitary Chat
----------------------------------------------------------- From: taranallan Message 1 in Discussion HI! I am so glad to have found you!!! I am not even sure where to begin. Please forgive me if this is long. My name is Tara & I am 35 years old. Diagnosed with a pituitary tumor in April of 2004. Started having severe boughts of nausea & vomitting in January of that year after having a hysterectomy due to endometriosis. After countless trips to the ER & being hospitalized for dehydration, having my gallbladder taken out, etc, a GI dr decided to order a head ct to see if something was going on & sure enough, there was this dumbbell shaped mass. It was causing my cortisol levels to drop & thats what was causing the nausea & vomitting. Had my first transphenoidal in June of that year. Had a bought of DI but it resolved before being discharged from the hospital 6 days later. Neurosurgeon wasn't able to get it all. Diagnosed as a Rathke's Cleft Cyst. Decided to do a wait & see approach with MRI's every 6 months on the remaining cyst. In April of 2005, started having problems with my vision. MRI noted that the remaining cyst was growing. Original neurosurgeon still wanted to do a wait & see approach. Endocrinologist at the time highly recommended getting a second opinion. So glad I did. Saw new neurosurgeon in July of 2005. Had another transphenoidal in August of 2005. That time, DI wasn't so kind to me. Spent 9 days in the hospital & ended up having to go home on DDAVP. In October of 2005, had a post-op MRI. Still showed something. Ended up having a craniotomy in December 2005. Spent 6 days in the hospital that time. Cyst had grown up above the suprasella & had started growing into the brain. For some reason, a lot of this did not show up on the MRI. Neurosurgeon said it was a good thing that he went in when he did. It was classified once again as a Rathe's Cleft Cyst. Luckily, DI decided to go away a week before surgery. Amazingly enough. Every once in a great while, it shows its ugly head but not enough to have to take any DDAVP for it. I now have hypothryoidism & possible growth hormone deficiency (levels have been low for the last year) & other deficiencies of the pituitary. (still doing a lot of tests). We had moved to SC right after the craniotomy. Had several MRI's that looked fine including one that was done back in October. In late October, I started having bad dizzy spells to the point of feeling like I am going to pass out. Endocrinologist didn't think it was nothing to worry about. Continued to get worse. Noticed that the dizzy spells were happening when my bp & heart rate falls around 100 or lower with pulse below 60. Ignored it until I went for my yearly examine with my pcm in January. Next thing I knew, I was being sent to a cardiologist. EKG was abnormal. Anyway to make a longer story shorter, we have since moved to northern Virginia over the last few weeks. Still having the dizzy spells, etc. Saw a new cardiologist & endocrinologist here. I am currently on Florinef to try to get my blood pressure up. Both running a whole bunch of tests. So far, we know that my cholesterol is high (229 with LDL of 160). Had stress test done 2 weeks ago. Having an ECG & 24 hour holter monitor done tomorrow. Previous ECG that was done in SC showed enlarged heart with mild mitral valve stenosis possibly due to the hypothyroidism. Had another MRI done about 2 weeks ago. Endocrinologist called earlier today & said radiologist confirmed it after reviewing & comparing it to previous MRIs that I have what appears to be another pituitary microadenoma. Its measuring 4.5 x 3mm on the left side near the sella. He said that he feels that this is either a residual or recurring Rathke's Cleft Cyst. He also said it wasn't there back in October. He is referring me to a neurosurgeon, Dr. Joseph Watson in Fairfax, to figure out what to do next. He mentioned that I might need another surgery. He is also doing an 8am cortisol level check on me tomorrow along with checking my thyroid & prolactin levels again. I have an appt to see the cardiologist & endocrinologist to go over all of the test results in 2 weeks. Can anyone recommend any insight on this? Can they grow back this fast??? Could this be what is causing the dizzy spells? Has anyone ever been to him before? If so, what was your experience? I am also not too far from John Hopkins & considering maybe going there. Any help would be greatly appreciated. Just do not want to go through another surgery. Sorry once again for this being so long. Thank you & once again, I am so glad to have found you! Looking forward to being an active member of this group. Tara ----------------------------------------------------------- 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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