I had surgery to remove a Rathkes Cleft Cyst twelve years ago when I was 16. I had horrible headaches, naseau and vomiting for four years before my doctors figured out what was wrong. If you end up needing surgery and live near Massachusetts I would recommend Dr. Peter Black at Brigham & Women's Hospital in Boston, he was wonderfull. Good luck to both of you!
~ Heather
Of all the things I worried about health related, this was not even on my radar. I had an MRI (w/wo contrast). None of the Two Neuros and One Endo have suggested a CT. I read the same thing you did about the calcifications and Cranios. They sound much scarier than Adenomas or Rathkes. Even though I have been told malignancy is a remote possibility I have been worrying constantly about having cancer elsewhere in my body.
I am so afraid to have the surgery and I am also afraid not to have the surgery. What an awful spot to find one's self. You will feel a bit better once you have had an opportunity to at least ask some questions. I go back and forth with dealing with it and losing my cool about it. I suppose that is normal?????
Hi buffie 123
Headaches, Migraines, Sinus & Tension Headaches are all of what I experience. I have a stigmatism in both eyes with worsening in the right eye over the last few years.
I had Bells Palsy in November of 2004. Which is an idiopathic disorder that causes facial paralysis. Lasted 2 weeks for the most severe symptoms and continued for a few more weeks as symptoms resided. Very slight residual effects. Fortunately! So when my eyes twitch I assume its left over from that.
My MRI was mostly for the inner auditory canals, so it was incidental that they found this cyst. They said possibly a Rathkes cleft cyst and suggested a 6 month f/u MRI for stability.
I 100% agree with you that waiting and watching is not at all comforting.
Ive been reading did you also have a CT w/ contrast? im going to request that my doctor order one, what Ive read states MRI is best detecting due to signal intesities, however it does not usually show the bony calcification that is usually present with craniopharyngioma.
I go to my primary tomorrow to discuss MRI results and to have him give me a referral to a neuro and endo just to be safe. I have yet to discuss my MRI results with a doctor, but it definitely has given me alot to think about. I am on medical leave for status post lateral release of my left knee and decided that while on this leave I would try to fit in all my appts ent, dentist etc... Never in a million years would I have thought I would be sitting here wondering what is growing in my head/brain.
Best of Luck and please keep me posted.
My sugery is considered elective and they also told me another option was another MRI in a few months to monitor it. Since it is nonfunctioning there is nothing than can be done but remove it. All the doctors have told me that it is a remote chance of malignancy, but that doesn't ease my mind completely. Again being so close to the optic chiasm I can't see the benefit of waiting and watching. Please let me know what you find out. I did read somewhere where Rathke's Cleft are Ovum shaped. Did you have a differential dx by the radiologist? Mine was Adenom, Rathke's and less likely to be cranio....
I hope that is correct, since the cranio is usually the ugliest to deal with.
Good Luck with the appt.
PS I don't know about you but I feel like I have awakened to a nightmare.
Thanks buffie123 for sharing your experience with me.
I have an appointment scheduled with my primary for this Thursday.
You had stated you are scheduled for surgery.Would that be transphenoidal surgery? Are they removing the growth so they can study it? Only share what your comfortable sharing.
Best of luck and God Bless!
Sorry to hear about your MRI report. I understand completely because I had a report just like it 2 months ago. Even after seeing a number of doctors there is no agreement on the makeup of my 4X10X4 growth. Most feel it is a adenoma with a possible cystic center. I hope it isn't the cranio...... since it seems like the most trouble to get rid of. I suppose only sugically removing it and testing is definite. The hormone testing helps a bit to dx adenoma, that is if it is functioning. Mine is non functional.
I am scheduled for surgery next month. By the way how far away from your optic chiasm is the cyst? Mine is only 1mm from the optic chiams which is why I am going ahead so quickly with the surgery. Def get a referral for a Endocrinologist and a Neurosurgeon. Those hormone tests can gather more info, since even a cyst can push on the gland and cause underfunction of your hormones. Keep posting to let us know how things are going. Good Luck