I am in the US but have also been diagnosed with rathke cleft cyst, about 8x8x3. It has not grown shown by MRIs 1.5 years apart, and my doctor says should cause no symptoms. However, I also experience headaches and lower neck shoulder pain that can be severe at times and cause/exacerbate headaches and even being on nausea at times. I also have some intermittent weakness in my right arm, which along with the pain were my initial reasons for the MRI. My prolactin levels have teetered back and forth between the normal/high level but all other pituitary function seems fine. I have also faced 2 bouts of pretty severe depression in the last year and a half or so, something New that I have never dealt with and wonder if this could also be related in some way. I feel for you and hope you obtain a second opinion, as I will be seeking one as well. I am looking into larger hospitals that specialize in pituitary disorders here in the US and hopefully can send MRI images for review. I dont know what the cost of this might be, but I would feel better having someone more well versed in the area tell me that it's nothing to worry about, or that treatment of some kind could be an option. You are not alone and I dont think its a coincidence that our symptoms are so similar, and hope doctors will look beyond whats in a book to realize that they are not the gospel and our suffering should not be ignored. We must be our own adviocates in these kinds of matters, and I send lots of good vibes and well wishes your way!
Please keep us posted. I have had Canadian friends who came here to get treated before things changed. I know plenty that post here and some on other places and some get great treatment, some... less than stellar so it can vary (as it does here as well and anywhere - if you get an unexperienced doc it really messed you up and a surgeon that has no idea, well, it can cause a lot of issues too).
Keep looking. I know it took me a long time and I had to travel from the east coast to the west.
Thank you very much!
Your comment is in line with my thoughts, I have been looking for a second opinion service in the US, however, I have difficulty selecting one since major hospitals either require a visit or are restricted to US citizens.
Thank you again, you encouraged me to pursue a further diagnosis.
Herry
Also you need a boatload of lab work to really know.
If you do some research and see older posts here, you will determine that the size is not a factor. I find it especially sad that the doctor is not acting when the mri shows a possible pituitary apoplexy as that is a serious condition.
There are doctors in the U.S. that will read for free off a cd but you have to find a pituitary center in Canada to help you with ongoing care. They usually are found in larger hospitals and university hospitals.
As our system moves closer to yours, I find out access at least I am finding in my own case, is starting to decrease and I am starting to get declines in medications and harder to get tests and things that used to be a lot easier.