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20 yr old with potential craniophyrangioma
Anyone else out there with this? He has a large tumor sitting on his optic nerve and he no left peripheral vision in either eye. Scheduled for a craniotomy. Would love to connect with others who have gone through this. So far he has no hormonal issues as it's very, very close to pituitary gland but not actually touching it. Same as hypothalamus.
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You got this! Went through it. No matter what happens it is something that can be overcome. Just make sure the surgeon has many of these procedures under his belt. If not, find someone who does. The surgeon told me if he left one cell of the tumor it would recur. At the time I was in the hospital there was a 40 year old person with recurrence from a surgery in his 20s. I had a large tumor. They didn’t think was craniopharyingioma due to the size being so large, but it was. Had surgery in 2000, but had transphenoidal approach instead of craniotomy by the surgeon who pioneered transphenoidal surgery. I was seeing what I called shotgun vision where I had purplish holes in my vision. It took 3 surgeries overall due to CSF leak development and infection. The second 2 surgeries were to attempt to control the leak. I also ended up with chemical meningitis!? Was told that if the cholesterol from inside the tumor made contact with brain tissue this would happen. I ended up with an epidural drain due to staph infection in my CSF. Prior to surgery my thyroid function was zero and my corticosteroid levels were low. I ended up with diabetes insipidus due to the tumor growing into my hypothalamus and the surgeon cauterizing this. After the 3rd surgery my pituitary was no longer detectable by MRI. I am on total hormone replacement therapy. I take desmopressin acetate for the diabetes insipidus. I am on synthroid for thyroid hormone replacement. I take cortef for corticosteroid replacement. I take depotestosterone for testosterone replacement. I originally was on HGH, but eventually stopped (noncompliance) because I got tired of of daily shots after about 7 years. I was 23 and am now 47. I am unlikely to produce children due to the loss of FSH and LH hormones with the loss of my pituitary . I mostly don’t think about it until I have to do my testosterone shots. The daily pills become second nature. I hope that this goes as easily as possible, and that his pituitary function is maintained. My vision came back after the tumor was removed. I had to get a new prescription from the optometrist.