mvoccaus3539 karma2010-10-25 11:20:32 UTC
It wouldn't happen to be in the area of the pineal gland by any chance?
I heard you say ping-pong-ball sized, and inoperable. That is very likely the pineal glad or very close thereabouts. The blackouts can be caused by the tumor attaching to the gland or the brain stem. It can be operated on, it's just that no doctors know about doing surgery in that location. But there are a few very talented doctors that can operate in previously-inoperable locations using an endoscope. This technology only years old but has already been done on hundreds of people. I wish you hadn't deleted your post. PM me with more information. I have two doctors at Cedars-Sinai and USC that I can recommend you consulting. You can mail or email your MRI and CT scan CDs to them and they will take a look. At this point, you have nothing to lose and everything to gain from getting a second opinion.
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mvoccaus240 karma2010-10-25 23:12:23 UTC
Hi guys, unfortunately, I haven't gotten any messages from this guy. I'm overwhelmed by the number responses this has gotten. I had almost forgotten about this thread when my sister called me and said you're on the frontpage of Reddit.
Here's some background about me and why I wanted to reach out this guy. Years ago, I wasn't feeling well, it wasn't anything horrible but as months and years went on, things just gradually weren't getting right. A CT scan on my head showed that I had a 1.5cm cyst in the pineal gland. Cysts aren't tumors, and they aren't cancerous, (so this may not be close to what this guy has, but I'll get to that in a second...) but what I was told was that what I have is completely harmless, inert, and has nothing to do with how I feel. I Googled Pineal Gland Cyst and, at the time, there wasn't anything on the internet about it. Not even a Wikipedia article. I found one person, who posted on some med forum somewhere, that she had the same thing and that she had surgery. I kept that in the back of my mind but obviously, I wanted to get a second opinion from someone more credible.
So I went to Cedars-Sinai in Los Angeles and the neurosurgeon I saw, one who has been in the field for more than 15 years, said to me that this sort cyst is all but inoperable and that there are a ton of risks, not to do it, etc. Just to put things in perspective, the pineal gland is pretty much in the deepest part of the brain. Anyways, I left it alone, and believed him when he said that this wouldn't grow or do anything.
I finally decided to email that person on that med forum that posted having the surgery and she emailed me back and told me to call her. She told me about her own ordeal and how her's had grown to 3cm (the size of a ping pong ball) when she had hers removed and that it was open-skull surgery. She told me how all the doctors told her what my doctors were telling me: It's not going to grow (which it did), don't worry about it, it's not causing anything (which is was). It wasn't until she found a doctor and NYU that said that this cyst is attaching to the pineal gland and even worse, the brain stem, and is the reason why she is having random blackouts that were getting worse and so on. Open skull surgery is risky as hell and chances of her dying in the OR were higher than her surviving. She defeated the odds, made a full recovery after 8 months. (recovering from open skull surgery takes a while, and they have to fuse your skull together with plates and all that stuff apparently). Anyways, she has been a point of contact for helping other people having strange seemingly inoperable tumors in this area find doctors that actually know about this. Feeling the way I did, I didn't care at all if I had to have open skull surgery, if that's what it takes, give me this doctor's name: I'll drive or fly to New York to see him. She told me that doctor retired, but said that there was a better doctor, in Los Angeles, that can remove cysts and tumors endoscopically. An endoscope is like this robotic snakelike thing that has a HD camera, surgical tips, and a suction thing and can go in to places previously unreachable.
So here's where everything comes together, and here's why I wanted to reach out to this guy. The address I got from from this girl I mentioned who had her own ping-pong-ball-sized cyst removed; that address was none other than Cedars-Sinai in Los Angeles. The same place I went to just a year earlier. It was the name of a different doctor, but it was same building. From the window of this new doctor's office, I can see the office of the doctor that said my cyst was inoperable, wouldn't grow, etc. My cyst had grown 20% since then. When I talked to the other doctor, he had told me that he had removed over a hundred of these. He even told me that I would spend only one night at the hospital due to the minimally invasive technology used and there haven't been any fatalities or even major complications from this surgery. I've talked to two other people who've had this surgery done there and that was indeed the case. My life isn't in immediate danger because of this, but it is growing and I'll likely have this surgery in the next 6 months. But here's the thing, I saw 5 doctors previous to this one, and they all said inoperable. The doctor I saw who not only said it was operable, but that he had done it over a 100 times was located in the same building of the doctor that said it couldn't be done.
Anyways, everyone's situation is different, and I'm not trying to say or imply that his situation is even close. But when I heard the word inoperable, and knowing that the pineal gland is the most deepest part of the brain, and finding out on my own that not even doctors who work at the same hospital know that other doctors working there have the technology to remove tumors and cysts in that area, I thought it would be at least worth a chance to reach out to this guy and give him the name of this doctor and give him one more opinion.
Anyways, I am still at work, and I got to wrap this up. Sorry reddit for any grammatical errors. I had to write this pretty quick. I'll let you know if I get any messages from this guy.
TLDR: I have a 2cm cyst in the deepest part of my brain that I was told by 5 other doctors was inoperable. The doctor who has successfully operated on the deepest part of the brain over 100 times works in the same hospital as one of the doctors who told me it couldn't be done. A cyst is not the same thing as tumor or brain cancer, but if my doctor can remove something that big from somewhere that deep, I thought it would be worth sending his info over to the OP to get one more opinion.
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