Well, I'm now three weeks away from surgery. I don't have a lot of answers as far as official pre/post instructions, but I have read quite a bit online about what to expect. Recovery sounds like it can be really rough and honestly I know it's going to be quite a journey to becoming "normal" again; but then, my life now is far from normal.
For those who don't know, pineal cyst surgery is somewhat "controversial" because neurologists haven't yet been able to explain why the pineal cyst would cause pain. However, for those who have the surgery done, 90% of people with terrible symptoms have their symptoms resolved afterwards. The other 10% see a reduction in their symptoms. Personally I think those are great odds. There are many success stories online that really give me hope as I take this huge step.
If you're interested in watching a video by a neurosurgeon who does the surgery, here is a good link:
http://musc.bcst.md/videos/resection-of-pineocytomas-offers-symptom-relief
Dr. Patel is one of the few doctors around the world who believes pineal cysts CAN cause bad symptoms and performs this surgery to help people regain their lives. There is also a doctor in Houston who does about 50 of these a year. The surgeon who will be operating on me is well-known even outside the US and has had people come to him from as far as Canada, maybe even farther.
In the past few years I had doctors tell me it was basically time to give up, to accept this as the rest of my life. One doctor, as I was sitting in his office in tears because my pain was so bad, told me I needed counseling. (Which I subsequently did, by the way, to cover all my bases.) It's unbelievable how arrogant and uncompassionate some doctors are. But I am so grateful to have found just one who can give me hope and who treated me with respect and kindness.
Next week I have pre-op testing. In the coming weeks I will try to post a few more times, and then once the surgery comes around, I will ask my mom to post for me. I will be off screens for 1-2 weeks at least. Thanks to those who take the time to read and I hope the video answers some questions, if you had any.
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