I was diagnosed a few months ago with what is likely to be a Rathkes cleft cyst. Test are still being done to see of it is causing extra production of Cortisol but the doctors say its unlikely the cause of my migrains, numbness in theft arm and face. They also found small focal fluid collection in the left centrum semiovale but never brought this up in the appoinmtents. I atually had to read about it in the discription of my MRI findings to know that it was found. They said there was no enhancement so likely benign. I was wondering if I should be concerned. Are these lesions common. I have e-mailed my nuerosurgeon but was hoping to get further knowledge. Thank you!
Rathke's are non hormone producing cysts. But this is not to say that they cannot cause problems. I think that it depends on what your symptoms are and whether yours is growing. I am going to share my own experience with you...but I want to make sure that you understand that what happened to me was considered to be very unusual and not the norm. So try to understand that in this context. Are you having surgery or in the process of trying to decide whether or not to have surgery?
I had a Rathke's Cleft Cyst. It was removed in Jan 2006. It was wedged between the two lobes of my Pituitary gland. There was also fluid in the sella region on the MRI that was done right before the surgery. The thought was that the cyst had burst before my surgery.
Prior to the surgery though, my doctors were very certain that it was a prolactinoma. My prolactin level was ~200 which is pretty high. I even had slightly elevated cortisol levels too via AM cortisols and a few 24 hour tests.
Also, I had killer headaches. I was also diagnosed with PCOS because I was having issues with my androgens being high. I had a lot of facial hair, had gained a lot of weight, Was insulin resistant and even starting to have slightly elevated glucose levels. The trouble was that there were no cysts on my ovaries so I never fully bought into that diagnosis.
So I really was a medical mystery and had a lot of symptoms. So I pushed for and had surgery. Because of this the surgeon removed more of my posterior pituitary gland than is usually done with pituitary surgeries I now have diabetes insipidus which is really a pain in the rear. But good things hapopened too. My androgens went down and that whole PCOS type thing that was going on stopped. But then I also lost function of all of my pituitary hormones and I am now panhypopituitary. So now I have to replace all of the hormones. The way I see it is that now I control my hormones rather than that pesky little cyst controlling them. My prolactin levels are still a little high (about double what they should be).
My pathology report said that the remains were a Rathke's cleft cyst and various cells of the pituitary gland itself including a few ACTH producing cells and NO prolactin producing cells. So, It may be that I did have the beginnings of Cushing's, but those cells were removed in the surgery. Now I'm the opposite and have Adrenal insufficiency along with low ACTH levels and cortisol.
Feel free to ask questions and best of luck to you-
Thank you for you story. Its not the RCC i have concern about its the lesion in the left centrum semiovale. I want to know if this is common. Cause for concern. Does a lesion indicate damage? I cant find much information on it.
In regards to the RCC, I have not decided whether to have the surgery done. I am still weighting for the test results. My cortisol was the only elevated level but I have had some weight gain , acne and low energy. I have to weigh my options with the doctor.
I had Cushing's disease which is the elevated cortisol. I would strongly strongly advise against letting cortisol going untreated in the body - it can be deadly. It will compromise your immune system, break down your muscles and bones and effect every hormone and all the other hormones. It is a nasty nasty disease. I am disabled probably forever for having it known from 1992 not removed until 2004. And my tests were not all that high. I was not treated as most doctors are not that skilled in Cushing's and do not understand the effects as the prescribe steroids like water.
I also could not find much on the lesion unless it was associated with a skin disorder. Did they give you the size of the lesion and as well if they thought it was a cyst or not, or what they thought it was? Lesion is well, not very specific.
they said it was a small focul fluid collection. Im not sure what that means. maybe cyst, i dont know. I guess I'll have to wait to hear what they can tell me about it. I just worry that its the implication that something could go wrong. Maybe develope MS in the future. Im a worrier.
I am sill waiting for the results of the 24 hr urine test to see if my cortisol is still high. If it is I will most definintly have the surgery as I have read enough about cushings to push ime into doing it. I am so sorry you have Cushings and thank you for sharing your story.
Well, it is hard to see such small things on an MRI - it is good for larger things, but it is not as clear on smaller lesions.
As for being a worrier - that is part the Cushing's. The cortisol raises anxiety levels - so rest assured that it is a symptom, and not just some random thing. It can also cause depression, pain, make some bipolar and do all sorts of weird stuff to the body and mind - so it is hard to separate the mental and physical, but it is probably caused all by the physical. Hang in there.
MS is not something that will typically happen - so please do not worry about that. I know many many many people with Cushing's and we have hormone and some auto-immune issues, few of us will go that far. I don't know anyone with MS after Cushing's. Just concentrate on getting better. I cured my Cushing's after my tumor grew back so my adrenals came out.
Hello all, I am a 36 year old female and have experienced 3 RCC drainage surgeries dated 3/11, 10/11 and 12/12 unfortunately mine seem to be persistent which leads me prepare for the 4th surgery scheduled 4/13. My surgeon decided that he will be more aggressive with time around in hopes to removing the entire cyst wall to prevent any further recurrences. I'm praying all goes well, if there is anyone with questions or concerns about living with RCCs, feel free to comment. I have lots of symptomatic experience that I will be pleased to share...KTM
Hi and thanks... How are your hormone levels?? How long has it been since you had your surgery and did they tell you that the wall was actually attached to the pituitary gland itself?..I'm just afraid that since my surgeon plans to be more aggressive to get as much of the wall as possible this time around I may end up with permanent severe pituitary damage. I must say I am heavily leaning on my faith at this point.
Hey there, I did lose all hormone function after the surgery. so i take growth hormone, thyroid, hydrocortisone, ddavp, and cabergoline. It rally is not a big deal once you get on track with the meds.
I, do remember the surgeon telling me that he was very surprised once he was removing the cyst as it was not like anything that he had seen before. It was filled with a thick yellowish colored mucous. Anyway I have a very small remnant of the wall, less than 10 % that was left in because it was adhering to the pituitary gland. . My pituitary surgery was in 2006.
Hey everyone it's been awhile since my last post but I had some hormonal issues that needed to be addressed as many of you can understand. Anyhow I was suppose to undergo surgery # 4 back in April but I cancelled it due to fear. But knowing how annoying these RCC's can be I am scheduled for the OR once again June 10th. I will post my post op status as soon as I'm able to. Thanks and blessings to you all dealing with these types of matters.
Wishing you the best for ur surgery in June. I am assuming that they will do it using the transphenoidal approach (thru the nose) . the surgery itself was not that big of a deal with me. If you have any questions, ask away!
I was nervous too. Stay in touch,
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