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Anyone have experience with a Rathke Cleft Cyst?


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Similar to a brain tumor, it's in or around the pituitary gland. 2-25% of people have them as they are discovered postpartum, but it is rare to have symptoms. I have to get my hormone levels monitored bi-weekly and have MRIs at least every 4 months. The cyst is just a wee bit too small to be operable, so they'll monitor it. In the mean time, I'm exhausted. It's affecting my prolactin levels, so my body basically thinks it's pregnant. :glare: PMS cravings have NOTHING on this! My nighttime munchies go through the roof! Beyond that, the usual migraines and vision disturbances. It's pressing on my optic nerve a bit, and have lost some of my peripheral vision, especially in one eye.

 

Just trying to find someone who has gone through this before. Not finding much out there. Would love to chat and ask some questions, share experiences. Please feel free to PM me if you don't want to chat here. I've debated and decided to go ahead and post. It would be nice to find someone who has gone through this. I need a little hand holding. :001_smile:

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I have not heard of your cyst, but dd10 has a pineal cyst on her brain stem (which I don't get - shouldn't it be on her pineal gland?) which is in the general area of yours. She used to have the resultant migraines but drs insisted it wasn't related. Hers is a little more common and findings are usually incidental. We were told with her it would cause concern if she could no longer do the upward gaze. Were you told the same?

 

I belonged to a yahoo group for arachnoid cysts. You'll hear from people who have cysts and their issues. It can be disheartening as most drs don't attribute symptoms to the cyst and there are many frustrated people out there.

 

I researched dd's cyst for a LONG time. I was nervous for a LONG time. I finally have peace and have learned to live with it. I've read, though, that it could cause cognitive issues, and I'm finding schooling her to be more difficult than my boys.

 

Since your vision is already being affected, are they concerned that it is blocking your cerebral spinal fluid? Is it causing more pressure in your brain? Is that's what's causing the headaches?

 

Dd had an MRI at age 4 and again at age 7 and the cyst hasn't changed. They don't plan any follow up. Do they think your can/will change?

:grouphug::grouphug::grouphug:

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:grouphug: Thank you, Denise. I understand how you would be worried: I'm doing fine, but it's entirely different if one of our kids goes through something! They said that it's big enough to cause symptoms but just a fraction too small to be operable. They never mentioned spinal fluid, but did mention pushing on the optic nerve, and that it is very dangerous... that is why they're monitoring it this much. So yes, they do expect it to change, and changing into a malignant tumor is one of the options. I'm pretty sure that this is the culprit of some of my migraines. I get so many different kinds of migraines and have so many different triggers, but I believe this is the culprit for the ones that I wake up with, and the ones where it feels like a pic axe is slamming into a melon, right at the back of my head in the centre. I wasn't told anything about the upward gaze, more like a fading of peripheral vision.

Thank you, Denise, I will look for a yahoo group or other forum from which to glean. I just had to try here to see! :001_smile:

Blessings on your little girl, I pray that it does not grow or change and that her learning is not affected anymore. :grouphug:

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  • 1 year later...
Guest colibri

I had a Rathke's Cleft Cyst surgically drained 2 days ago via sub-labial transsphenoidal surgery. I'm still in the hospital and will be discharged tomorrow. The cyst was about 5 by 3 by 5 mm. The neurosurgeon said it was not causing any pituitary dysfunction, but I disagree. I've had headaches and vertigo for the last 6 years, physical symptoms of Cushing's, as well as occasional high ACTH and cortisol levels. I also have hypothyroidism with 2 nodules on the thyroid, and loss of visual acuity. I'm hopeful that draining the cyst will improve my quality of life. Please let me know how you are doing.

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  • 10 years later...

Hi Specialmama, I saw you posted some time ago....I have the exact same diagnosis, rathke´s cleft cyst with high levels of prolactin, my body thinks it's pregnant!!! are you still keeping track of this thread? I mean 14 years later? I´d love to chat with you.......about symptoms about treatment, about having a hand to hold........hope you are feeling much better now and have got the treatment and advice you needed, particularly for the hormonal affects. I´d love to talk and struggling to find help online. good health to all on this thread x

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3 hours ago, Jean in Newcastle said:

Ten year old zombie thread. Is that a record?  

Original post was almost exactly TWELVE years ago (contrary to 1st time poster reviving this thread saying 14 years... 2022-2010= 12 😉 -- embarrassing mistake to make on a homeschool education board 🤣 )... And, I think I've seen one even older, that was originally posted in 2008 or 2009...  😉

🧠🧟‍♂️

 

Edited by Lori D.
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19 hours ago, Lori D. said:

Original post was almost exactly TWELVE years ago (contrary to 1st time poster reviving this thread saying 14 years... 2022-2010= 12 😉 -- embarrassing mistake to make on a homeschool education board 🤣 )... And, I think I've seen one even older, that was originally posted in 2008 or 2009...  😉

🧠🧟‍♂️

 

You have such high quality zombie emojiis, Lori! They always add so much to the discussion!

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  • 2 weeks later...
11 minutes ago, jennica said:

I´m really sorry, I swear Im not a zombie...I don't even know what that is! I am genuinely having the same problem. No worries is if this is not the right place to post! I´m sorry for the misunderstanding

 

Specialmama hasn’t been on this forum in years. If you have a current question start a new thread. I would suggest doing it on the chat board which is more generalized and might give you more input. 

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