Rathke's cleft cyst, surgery, symptoms

[laladi]

I was just diagnosed with a rathke's cleft cyst. I had been complaining about symptoms for at least two years (had mastitis three time in 2013, no periods since early 2012), but a few months ago I bypassed my PHP by going to a women's clinic to check on my "menopause", and the blood work came back with high prolactin. Prolactin was 58, so we suspected a small prolactinoma, but I insisted on an MRI, and that showed a 1.5 x 1.5 x 2cm lesion, extending along the pituitary stalk. Because the lesion showed high intensity both pre and post contrast and on FLAIR, the radiologist thought it might be evidence of hemorrhage.

The neurosurgeon #1 agreed with a radiologist, recommended surgery, and ordered a CT scan to check whether there's something vascular going on. CT scan looks normal according to radiologist, but I haven't had follow-up with neuro #1. I then met with endocrinologist #1, who works in the same practice as endo recommended by neuro#1 but I had a longstanding appointment with her because of a thyroid cyst I had back in April so I could see her sooner. I had a full pituitary panel done before meeting with her (by getting another endo to order it for me) because I was anxious to speed things up. All numbers look normal except prolactin (62.7), LHS & Estradiol are low too. She agreed to doing a cabergoline trial on the off chance it is a hemorrhaged prolactinoma, or a tumor that has only a bit of it producing prolactin, but she agreed with neuro#1 that given my labs and MRI the elevated prolactin was most likely due to stalk effect.

In the meantime, I had appointment with the pituitary center at a nearby city, with endo#2 (neuroendo) and neuro#2. Endo#2 and the two neuro fellows who first saw my MRI seemed stumped. Endo#2 actually said she thought she'd seen it all, but my MRI was different. Then Neuro#2 came in and in 2 seconds figured out it was a cyst and explained all of its features to the other doctors, and explained to me where they come from and all that. Very nice, not rushed like neuro#1. The whole consult lasted almost 3 hours!

Anyway, neuro#2 also thinks I should get surgery but is not urgent. Endo#2 was a bit more insistent about surgery, arguing that my constant headaches are not normal (what?!?!) when I tried to argue that my only symptom is amenorrhea, which I'm rather enjoying (never mind the joint pain, insomnia, weight gain, excessive thirst, anxiety, and other things like that which have been bothering me at increasing but manageable levels for 3-4 years).

After thinking about it for a week I decided to go ahead with the surgery. Honestly, I'm petrified. I've never been under general anesthesia, and I have sinus infections all the time. But I think this is a good team (neuro#2 has performed >1,100 pituitary surgeries in over 25 years), and they even gave me a copy of a paper endo#2 and neuro#2 co-wrote specifically about Rathkes cysts, and their outcomes and complications are pretty impeccable.

But I'm still scared. I'm wondering if I should keep neuro#1 follow-up appointment just to get a "second" option, and the CT scan actually looked by him (neuro#1 did not want to see CT scan). I know neuro#1 mostly does spinal surgery, so I know I prefer neuro#2, who has a lot more years of experience and gets referrals from the whole state and beyond.

I'm just rambling. Sorry :) I've been reading old threads here for a few days and thought I'd introduce myself, but I'm not sure what I'm looking for. Reassurance? BTDT?

Thank you for reading :)

[laladi]

Thank you, rumpled!

I have a date for the surgery now. October 1st! (trying not to freak out)

So I really should think about the neuroendocrinologist as the "main" doctor? In the sense that she'll have to work to stabilize my hormones, right? She was the one who seemed convinced I need surgery, so I hope she's right. When I read about the possible complications -- rare as they may be -- I get nervous. You know, should I live with the "lesser evil". But I guess if this thing can keep growing it is better to get it out before it causes more damage.

I hope horselip has a chance to chime in. I've been reading some of her older posts in this community.

oh, I have a question. I can't remember when was the last time I went a day without swallowing mucous (post-nasal drip). I'm concerned I may have a mild sinus infection (I'm prone to those). Do they check you for that before surgery? They only want me to show up two hours before the surgery, so I'm not sure how much they're going to check me for at that point. The last thing I want is for the surgery to introduce some bug into the other side of the dura!

[rumpled]

I can totally understand being scared and uptight.

I hope you can get the surgery soon. The meds can help with the rathke's but not resolve it - so you are lucky you found a competent set of doctors and can get treatment.

A skilled surgeon is the NUMBER ONE factor in the best outcome of your surgery so you have that on your side. The other factor is your lesion - and you have no control over that one so with number one on your side...  you have the best chance still of a good outcome.

I will say a neuro cannot and does not treat pituitary for the most part... so I stay stick to the pit docs.

When you don't have a straight case, it can be even more nerve wracking - but stick with it.

I hope you post with good news soon.

Horselip has the same lesion - she may post too.

[laladi]

ps. I'm not taking cabergoline and I don't have a date for the surgery (scheduler and I have been playing phone-tag), but I hope to get it in early october.