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surgery decisions

I have a 7mm rathe cleft cyst that has been monitored for the last 5 years.  At the time I was trying to determine the cause of increasing pain on the right side of my face and worsening headaches.  My ophthalmologist ordered the MRI.  After getting the results he told me that an annual visual fields test was all that was necessary.
There had been some red flag moments both before and after, but My doctor assured me that my vision would be the first thing affected, so I chalked up my growing list of symptoms to age and stress or other causes.
Finally, a convo with my GP led to another MRI and a referral to an endo & a neurosurgeon.
I have had some hormonal testing & will be having some additional tests this week.  My nuro is promoting surgery, but the endo called on thanksgiving day to discuss the risks involved. After explaining the chances of permanent hormonal changes, she also detailed a painful recovery process.  She noted that if my growth were much larger or much smaller the choice would be easier.  As it is, it falls on the fence and it's difficult to say if surgery would improve my situation or cause additional problems.  
I'm no fan of surgery, so her words make me even more uncertain about how to proceed. I have near constant pain on the right side of my face and worsening migraines, extreme thirst, no periods, fatigue, and overall ache.  along with a history of acute post surgery complications that required steroids to correct each time.
I know everyone has a unique experience, but am looking for insight into the benefit vs risk of surgery.
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Avatar universal
Agree on the travel! I did too...
Helpful - 0
596605 tn?1369946627
Hi again-
Thyroid cysts are not uncommon, but developmental ones I don't know. If the Rathke's is affecting your thyroid then your TSH would be low even if your Free T4, and Free T3 are in range. So that is important to get checked.
  
The 2009, different sort of pain in my face, unexplained weight loss, dehydration could be caused by low cortisol levels or Diabetes Insipidus.

ACTH is a pituitary hormone. It would probably be lowish if pituitary in nature.

Have you had a growth hormone stimulation test? The type where they measure your base line level and then inject a reagent like Arginine to see if the levels go up?  

What did the Endo say about your insatiable thirst? That sounds DI ish to me.

And the Female hormones, well that could be pituitary too.

Anyways It would be worth it to see someone at a pitiutiary center. You need the right tests and a proper assessment of your pituitary gland. This is so that you can decide if surgery is worth the risk.

To me it sounds like your gland is being affected by the cyst. I had a very similar profile to you when I was at your stage in the pituitary adenoma cycle.

By the way, I am 50y and I began to become symptomatic in 2003-4? Then got worse in 2005 and had surgery in Jan 2006.

I had some issues post op: became panhypopit with DI. Hormones can be replaced but you do not ever feel the same if you lose it forever. I've also dealt with ongoing csf leaks (parts of my skull base are very thin...they say developmental) and that has been a night mare.

Then, like you, I deal with facial/head pain which is improving somewhat. They say case is unusual but...I dunno. I think that my surgery may have been botched or I could have gotten better results with a pituitary surgeon and better doctors. But, I can't go back.

If there is not a good pit center near you, it is 100% worth it to travel IMHO.

Horselip
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Avatar universal
My feamle hormones were low too, but she said that could be early menopause. I'm 45. I have been having abt 3 periods a yr for 5 years
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Avatar universal
I have had thyroid cysts that, I was told was also developmental it wa biopsyed and drained in 2008..  . I have been on synthroid for bat 5 years.  
I have had migraine since I was a child, but in 2009 I developed a very different sort of pain in my face.  I went to an ENT, had a root canal redone, and saw my ophthalmologist trying to sort out the cause.  Long befor I knew abt the pit cyst I had multiple unexplained problems. bouts of severe unexplained weight loss. Dehydration and or relentless vomiting that would send me to the ER. I have had some very serious experiences (low blood pressure, hemolysis, potassium levels that have led to ICU and long hospital stays and testing. one was post trauma, the other 2 after my C-sections.  The cause has always been unclear, though I ultimately was given steroids on the 3 most serious occasions.   i now know at least some of that can be caused by low cortisol levels.the endo said my court was "low adequate" but ordered a dex suppression test as follow up. This is a cushings screening right? which would mean my ACTH was higher than norm?  My growth hormone is also low.  I ask about diabetes isip, but she said my sodium was fine.  I have an insatiable thrust that has led me to chk my blood sugar many time over the years (my son & husband are type 1 diabetics) though it is never high and usually low.  I don't think there is a pit center anywhere never me.  I'll have to look.
Helpful - 0
596605 tn?1369946627
Hi Abrille- Rathke's can affect different people, different ways. They are a cyst that form when the pituitary gland is forming when you are in the womb.

For many they never cause probs. They live full lives never knowing they had it. For others they can cause probs. They don't know why, fully.

I measured low in Growth hormones (via a special test), thyroid and my female hormones while it was still in my head. It also raised my prolactin fairly high. Plus I had head aches too.

Those are the types of things that you have to weight when deciding whether to have surgery. If you are already losing function or very little.

I agree you want a doc who works with you.
Horselip
Rathke's tend to be between the two sides of the pit gland and closer to the pituitary stalk.
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Avatar universal
First, you need to get to a pituitary center. There you should get under the care of a neuro-endo and a competent pituitary surgeon.

I had the surgery myself for a different tumor (actually 2 of them) and another poster, Horselip, had the same as you. I am panhypopit - I replace all my hormones but one. I think Horsey is the same.

As for a painful recovery - ah... no. I have had 12 surgeries and my pit surgery was a pretty easy one. I felt great after my surgery! I think I only took a tylenol. I do know that it can depend on surgical technique as some surgeons can do say, spinal blocks and things that add to recovery and so some of my friends had a slightly tougher recovery - but no one had one that was worse than a few days. You must always have an experienced surgeon for the best surgical outcome.

As for the hormonal changes, likely you already have them or they will happen over time anyway - so the doctor may not be testing you correctly or there is lab error. 8am fasting with a good lab really helps.

As for replacements, it is not like having a real hormone so you have to learn to adjust. Some people do very well, and some discover new issues. I was the latter - I found new disorders and I could not work again, but I have finally found a stable period.

I would think that you would likely need some hormonal support at some time, and you need a competent doctor. The doctor should not be scaring you off - plenty of us do this and we have long lives. You have symptoms and they should be resolved.
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