× Rathke's pouch is a normal component of embryological development which eventually forms the pituitary gland. This pouch normally closes early in fetal development, but a remnant often persists as a cleft that lies within the pituitary gland.

Small RCC Big Problems

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Replied by pnaadmin on topic Small RCC Big Problems

I am not a medical professional but I do recommend that you get a second opinion from a pituitary specialist. Not all physicians have experience successfully treating pituitary disorders, we highly recommend seeking help from an endocrinologist with pituitary experience to start with or if possible go to a pituitary center. Pituitary centers have multi-disciplinary teams of doctors that all work together to determine the best course of treatment for each patient's individual needs.

Our website has lists of pituitary centers and pituitary specialists. Here are links to both lists.

https://pituitary.org/medical-resources/hospitals

https://pituitary.org/medical-resources/physicians https://pituitary.org/medical-resources/physicians

We also have some information on our website about RCCs:

https://pituitary.org/knowledge-base/disorders/rathkes-cleft-cysts

We also recently did a webinar about RCCs which can be found on the page linked to below. You will have to scroll down a little bit, I think it is currently the 5th one listed. I recommend watching the webinar, it is very informative, it is about an hour long and has a question and answer session at the end that may also be quite helpful.

https://pituitary.org/knowledge-base/pna-educational-webinars

I hope you are able to get some answers, keep fighting for your health. Feel free to contact us for more information.
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9 months 1 week ago #10810

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Small RCC Big Problems was created by RCC Lady

I have a small RCC - 4mm T1 - which I have been told by my PCP and a neurologist not to worry about. Both said RCC TYPICALLY do not cause symptoms.

Thing is - I have had a pretty much consistent headache for the past 3 years or so. I have gone to the Chiropractor for the past 2 years 3 times a week, sought treatment with a neurologist (not the one mentioned above) for about 6 months before he referred me to a pain management specialist. I have had shots and been on medication after medication. NONE of which have TOUCHED these headaches. To top it off, at the beginning of this year, I have started having visual disturbances which I saw my doctor for in November. We had ANOTHER MRI done in November (had an MRI done in October 2018 which did not show anything) and it showed the RCC....

I was honestly relieved because I thought it showed something which we could do something about. Now I am having the hardest time getting a doctor to even listen to my symptoms and think there is ANY connection between my headaches and the RCC!!! I feel like this is a classic RCC case and I just want a neurosurgeon to go in and pop the pimple in my head to relieve the pressure which is causing the daily headaches!!!!

Not meaning to complain, but anyone else been up against medical professionals who don't believe RCC has symptoms???? How do I advocate against that? I know it is not typical for RCC to have symptoms, but I have also done a lot of research and when RCC does have symptoms.... #1 symptom.... HEADACHES!!! So frustrating that I can't even get a doctor to listen!

Any suggestions are welcome :)
9 months 1 week ago #10809

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