After a year of pregressively worse symptoms, I was diagnosed with an 18mm pineal cyst a couple of months ago. Turns out it was there in a previous MRI from April, but the radiologist somehow missed it (?!). The new MRI was compared to my old one, though, and it was there 8 months before - just a bit smaller.
I've gone through SO much in getting to this point, thousands in neurology and dental (not needed!) and physical therapy, over a dozen medications, a year of my life in hell due to one mis-diagnosis after another. But finally, I have a top neurosurgeon who's going to operate and I HOPE I'll be back to my healthy self. We'll see.
Just today I met for the second time with a neurosurgeon, and he's going to operate to remove the cyst in a few weeks. (We're calling it a cyst but they won't know 100% until he gets in there; it could be a benigh tumor. The treatment's the same either way.) He'll drain the cyst, and remove as much of the cyst wall as possible. Some of it is attached to important structures; for example it's attatched to & compressing the tectal plate. He'll leave those parts of the wall in place. The key is to deflate it, and keep it from re-inflating.
It will be endoscopic surgery. The operation is called "Occipital-Suboccipital Craniotomy, Excision of Cyst, Lumbar Drain Placement". The lumbar drain is to remove CSF fluid so the surgeon has room to operate. He said I'd have a couple of days in the ICU and a few more in the regular hospital. 6 week recovery time. I can return to work 8 weeks after surgery.
I've been on disability from my job for 6 months now, the symptoms are THAT bad. Thank goodness I have an excellent career, 18 yrs with my company and they're holding my job for me...at least for now.
I have to get better! I need the income from my job, and I have a 5 year old son who needs his mom. I miss taking him to the beach and on other adventures, going biking and running, having a life. Seems all I do now is sleep, take care of my son, and deal with a lot of pain.
Main symptoms are as follows - similar to what many others have described:
-HORRIBLE, daily left-side headaches. In and above my eye and stabbing down on top of my head, and in the left-side notch at the base of my skull. Pressure when I try to lie down flat (so I sleep propped up on 3-4 pillows)
-My vision. It looks like translucent, colored lights and shadows are covering everything, all the time. It's never really dark, even when I close my eyes - there are lights flashing and zipping around, ALL the time. If I try to stare at something, I get double vision, or the object apears to quiver - nothing really stays still.
In addition, I've had odd muscle twitches all over my body when I try to relax (every evening) - like the leg twitch you'll get before sleeping, but this is all over my body, ~a dozen each night. There's occasional numbness & weakness in my left hand and leg, and I have hyper-reactive reflexes (diagnosed by the ER doctor and a neurosurgeon). If I sit in a chair, sometimes my ankle will start to flex repeatedly so my knee bobs up and down, for example. The rubber mallet tap on my knee makes my leg REALLY kick. This is ALL new in the past year.
A ciouple of doctors have mentioned MS as a concern, but we'll see. I hope the surgery cures me. If it doesn't relieve all the symptoms, I'll go from there, at least knowing there's no lump taking up space and crating excess pressure anymore.
Good luck to everyone!
This is Luna, the poster above. I had my surgery 8 weeks ago and am SO, SO GLAD I did!!!!!
The surgery itself was kind of rough. Surgery was delayed because my neurosurgeon wanted to add a second surgeon to assist. They ended up going with a conventional approach, and I have a 5-inch scar straight up the back of my head. My hair covers it pretty well, though.
I spent 8 days in the hospital, including 4 nights in the Neuro-ICU. I was still in rough shape the first few days I was home, with legs shaking so much I could barely walk sometimes. Had some bizarre symptoms where words would scramble on the page I tried to read, or change outright different words. REALLY weird! About 2 weeks post-op I started feeling a LOT better, though.
The important part: 8 weeks out, I'm doing unbelievably well.
Headaches: Left eye and skull-notch headaches are GONE. Completely. Sometimes I get a few twinges on top of my head, left side (same spot as before), but mild - NOTHING like before.
Vision: My light perception is still weird. But, I don't get the "spins" anymore, or any double vision. My field of vision is much bigger than before - I used to see black shapes in my peripheral vision and sometimes a large purple patch in the front-right (which would make it really hard to read), and those are gone completely. And, I can look UP without turning my head upward. I couldn't rotate my eyes upward before.
Dexterity: I did not expect this at all, but I've regained dexterity in my left hand. For many years I've been unable to quickly tap or wiggle the fingers on my left hand; I thought i was due to an old head injury and even told the hospital staff to ignore my poor left-side abilities on my neuro tests. Well...last week the dexterity came back, completely. Suddenly (this was not the case immediately after surgery) I realized I could tap and wiggle my fingers easily, just as well as I can with my right hand. I was STUNNED.
Mental clarity & head feeling: For the first time in a long time, my head doesn't feel over-full, like there's too much pressure everywhere. My scalp doesn't feel constantly bruised anymore, and it feels hard, not slightly soft and swollen to the touch.
I'm still getting my wits and memory back - but they ARE coming back. Tomorrow I'm starting back at work and I'm really looking forward to see what my brain is capable of :)!
In a nutshell: I wanted the surgery because I hoped it would cure my horrible headaches and other symptoms; I just was barely surviving as I was. Turns out the cyst was causing way more problems that I realized - I had no idea until it came out!
Good luck, everyone!
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