Hey everyone. I'm a young actor in LA, and I'm just looking for some support, and stumbled on this website... I'm having decompression surgery on Friday, and just felt like trying to talk to someone who's gone thru this already. Some of the posts are very encouraging here, others are quite terrifying lol.
All my life I've had random headaches, and I've had the occasional bladder problem (I guess specifically, it's "retention", where I can never quite empty completely, and often feel like I have to go). The retention and headaches seem to come and go, and can act up during stressful times.
Back in late August of 09, I started getting numbness all over my body. More of a pins-and-needly feeling I guess. It would be in my arms and legs. I went to the clinic and they said it was stress, but if it continued to come back. Sure enough, weeks later it seemed to be happening more frequently, so I went back, and they referred me to a neurologist. He first said I seem fine and normal, and it could very well be stress, and to see what happens over the next few weeks. One evening, I was at a lecture, and my face went numb and my vision blurred a bit (that was scary). With that note, the neurologist had me go get some MRI's, and upon receiving them, he said he thought I might have Chiari Malformation type 1.
A side note, I'm very much in to working out. And throughout spring of 09 til the symptoms started, I was really pushing myself at the gym, and it was GREAT! I was getting stronger, looking cut, gaining some mass, and then BAM these symptoms started.
The neurologist said he believes it's been present my whole life, but the heavy working out added enough stress to trigger the major symptoms. At that point, he suggested I stop working out entirely until I find out what's going on (and I haven't worked out since, which is super depressing.)
I would also randomly go though bouts of fatigue, and just be tired for a week or two at a time, no matter how much sleep I got, and then it would just go away.
My muscles feel very weak frequently; I can't brush my teeth without my arm getting tired, and some muscles will just feel sore or super stretched even though I'm not doing anything.
On occasion, my vision will blur. (Also note, I've been nearsighted since 5th grade but had LASIK eye surgery to correct it about 6 years ago).
The neurologist referred me to a neurosurgeon to get a 2nd opinion and talk about options for treatment. Both the neurologist and surgeon said I caught it fairly early. I have a small syrinx down the length of my spine.
The surgeon said my brain is basically too big for my head, and the weight of my brain is causing the back end to sag down, causing the tonsils of the cerebellum to put pressure on my spinal cord, causing a lot of the symptoms I have. There is a "log jam" in the lower brain that is causing blockage of the CSF, and since it can't get to the rest of my brain, some of it is being shot down into my spine, causing the syrinx.
After some discussions and whatnot he recommended the decompression surgery, and said he might remove a slight part of the cerebellum as well (this idea is quite scary to me, but he says it's not a problem).
To add more nerves to the whole thing, this is the SECOND attempt at surgery. I was scheduled to go in February, was all set and cleared to go, I'm hooked up to all sorts of tubes, they knock me out, shave my head, and find a rash with bumps on my head where they need to cut. Worried it was an infection, they cancelled the surgery. After a visit to the dermatologist, turns out I have eczema back there, and while luckily it's nothing to worry about in terms of surgery, I had to wait for another chance at surgery for another month.
So, I've since had the time to add more worry about getting cancelled again and what not, and stumbled on this site while looking around. Perhaps not the greatest idea since I've read some tough stories...
But, provided all goes well with the surgery, what can I expect afterward?
Will I be able to get back to working out soon?
Will I still be able to do all of my film acting stuff?
What are the effects years down the line? In 2015 or 2020, where will I likely be with my health?
Luckily, I'm young (24), and in great health otherwise. I don't drink, don't smoke, and before this whole ordeal, excercised regularly.
Any thoughts or advice are much appreciated. And much appreciation to anyone who took the time to read all of this...
I'm doing ok I think with keeping myself calm, but this is such a nerve-wracking experience, and the worst ideas pop into your head about what could go wrong.
Thanks for any support. And I hope you're all doing well.