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Rathke cleft cyst

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Replied by kmk963 on topic Rathke cleft cyst

Aloha  [email protected] :

I am so sorry to read what you have been suffering with. It can be such an incredible source of frustration to have something going on "in your head" and insisting that it is this very issue, RCC, that is the source of your misery.

In March of 2013, when bending over to pull up my pants I got an intense headache that felt as if my head was going to explode. This headache became my new around the clock friend... independent of action, behavior, position, nutrition... it never left until I was able to undergo a Transsphenoidal Hypophysectomy. Fortunately I seemed to have been in the right place at the right time... as a massage therapist I just so happened to be working on the CEO of the best hospital for brain surgery in Nashville. When I finally shared of my headache she referred me to a Neurologist who then ordered an MRI on my first visit with him. However my father was dying of cancer at the time, so we took off for a family summer lake trip to have one last hoorah as a family before the head patriarch passed on through. I thought nothing of it when I didn't hear back from the Neurologist after the MRI, the lake even encouraged my phone to go on vacation. The headache was horrendous, but I had grown accustomed to just dealing with it despite how doubled over it had me at times. As vacation ended, and we all trekked back to our daily lives my phone began to blow-up. I had numerous missed calls from the Neurologist himself and one of the last messages I recollect him referring me to an Endocrinologist and a Neurosurgeon... Now what on earth would I need a Neurosurgeon for? After all I just have a headache.

Skip ahead to my 15th MRI, and my case being in front of the brain tumor board, and my headache not even taking a coffee break... and ping - the song of an angel's breath as I get a text from the CEO asking if there is anything she can do. Desperate for relief, as this headache was barreling for 6 months straight, I asked if she could have the neurologist and the neurosurgeon speak to each other. As apparently their schedule's were conflicting and preventing me from getting approval so the board could authorize the go-ahead for my brain surgery. See the pathology wasn't clear on the MRI (hence 15 of them), and they weren't too sure if they were dealing with an aneurysm, a tumor or ??? I received a phone call a few hours later that day, and the Neurosurgeon's office was coordinating my surgery. At which point I surrendered. I asked for help from everyone I knew and even those I didn't but who had heard of me. It was agonizing working on bodies when mine clearly needed to be fixed. So finally I got assistance with managing the pain (a cocktail of pain meds as I had gone the 6 mo. headache without such) and the community came to our rescue. Literally checks started coming in the mail and my children and myself were carried on the wings of angels while I underwent surgery and the sobering 12 week recovery. But to wake up in the Neurological Intensive Care Unit and have the headache gone? Finally! However I cashed out that headache for extreme tinnitus, which if one had to barter I suppose it is the lesser of the evils.

It wasn't a skip in the park adjusting to the recovery process - fortunately they got the Diabetes Insipidus under control before I was discharged from the hospital (~5 days post-op), but I had a new host of feelings to work through. For weeks I felt like I was floating just above my body, as I became hypothyroid and getting the thyroid meds dialed in takes a minute. The ringing in the ears has its moments, sometimes I play guided meditations or soothing music to get to sleep as the ringing can get so loud.

Skip forward to 5 years later - I get annual MRIs, which I have been told I will have for the rest of my life. Routine care from my Endocrinologist to what has now finally gone to annual appointments. And every 8 mo's a visual field test to ensure my eyesight doesn't disappear - as my RCC was pressing right on my optic chiasm. And all has been SO much better... until this latest MRI - which shows the sella T1 hyperintense and T2 hypointense signal growing again :( So I suspect, my annual MRIs will shorten in interval distance, and a heightened closer monitoring will occur. Not at all happy to see the mass gaining volume, however I am still in the most opportune environment with the most skilled Neurosurgeon any gal could ever wish for. 
The following user(s) said Thank You: Pituitary
3 months 4 weeks ago #10614

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Replied by Gemhound on topic Rathke cleft cyst

Thank you...posted it 8/4/18. And I have been doing research but no luck yet.
1 year 2 weeks ago #10457

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Replied by ac11788rcc on topic Rathke cleft cyst

I can’t see when you posted this. Did you ever get this figured out?
1 year 2 weeks ago #10456

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Replied by pnaadmin on topic Rathke cleft cyst

There is a list of pituitary specialists on our website. A team of specialists is your best option for treatment.

Here is a link to the physicians:


We also have a list of pituitary centers where they have multi-disciplinary teams.

Pituitary centers


Find a team that can run tests and determine the best course of treatment for you.

Take care,

Tammy Mazzella
Pituitary Network Association
[email protected]
1 year 2 weeks ago #10454

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Replied by Gemhound on topic Rathke cleft cyst

Hello, you sound like an exact copy of me. They are telling me it's to small to have all these symptoms. My heart rate is so low som days I pass out. Periods and breast milk production won't stop. I am a poster kid for symptoms and they won't do anything. Do u mind sharing were you get treatment? It is so hard to find anyone that actually knows anything...
1 year 2 weeks ago #10453

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Rathke cleft cyst was created by [email protected]

Hello,I was diagnosed with rathke cleft cyst one year back and the size of the cyst is 1.2 cm by 1 cm by 1 cm.
I feel very fatigue,tired,weak,dizzy all the time.I have no energy to do anything.I have headaches once a week.
I have done all my hormones tests and all the tests are under normal range.I am also having hypothyroid but it's under normal range and my testosterone levels are a bit low.My vision is also fine.
I have done all my body tests and everything seems to be fine.The neurosurgeon and endrinocologist are telling that these symptoms are not related to the cyst since most of my hormones are normal.
I am really very tired of my symptoms and don't know what to do.I am planning to go for a surgery but the surgeon is telling there is a very small chance of getting the symptoms less as all my hormones levels are under normal range and the surgery will be of no use.The doctors are telling that all my symptoms are not related to the cyst at all.
Can someone please help me with this.As anyone have the same symptoms.
Shall I go for surgery and wheather my symptoms are related to the cyst.
Also,note I have done three MRI in one year time and there is no increase in the size of the cyst .
Please help me with this ..
2 years 2 weeks ago #10372

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