My 9 yr old son was diagnosed with a "likely" pars intermedius cyst (3mm) 2 years ago at the age of 7. He had an MRI because of migraines & this was an incidental finding. Today I got the results of his 3rd MRI & its now 4 mm. At what point do you actually treat this? This is such a small cyst and I believe the risk of surgery out-ways its removal, but this wait and see approach is hard. Anybody else have experience with this? I've been to 2 specialists both experts in their fields and they both say everything is okay.
The pars intermedia in a thin layer of epithelial cells located between pars distalis and neurohypophysis. It arises from the posterior wall of Rathke's pouch and contains vestigial lumina of Rathke’s pouch which appear as narrow vesicles of variable length. These may give rise to Rathke's celft cysts (also known as pars intermedia cysts. "
What type of specialists did you see? Did you see pituitary specialists or did you see neurology specialists? If the latter, then I would go see a pituitary center. I have a link in the health pages to the Magic Foundation and through them you should be able to find a specialized pediatric neuro- endocrinologist. Lucky for you that you are in California as I do believe that many of the better centers are out there.
Besides the MRI - he needs lab testing as more than the size of the lesion, the more important factor is how or if there is going to be a hormonal impact of the cyst.
He was likely born with it. They remove it via the nostril. But given his age, they may want to watch (sorry!) as surgery may cause him to lose other hormones like growth hormone and reaching puberty etc. normally is so much better than on shots, patches etc.
I got migraines with my pituitary tumor too - and Horselip had the Rathke's cyst. Incidental... hah... they say that, stay away and go elsewhere. Get copies of everything and make sure the next MRI is a nice, pituitary MRI - dynamic! MRI slices are 3mm as it is so smaller lesions show up better when they take images showing the uptake of the contrast.
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