Sep 30, 2015
Hello! I have to apologize in advance for what might end up just being a be a long, boring, annoyingly repetitive, uninformative, pointless post. But, I write in HOPES of being some kind of help/if I can be of some ease for you. I apologize if it's scattered&of no help-I don't seem to be able to write cohesively these days. :/
I'm just barely over 3weeks post-op. Nothing would've ever made me NOT scared of this surgery. But, I was ready in the sense that finally, I'd had enough.My symptoms were not allowing me a life,I wasn't "living" life. So, in that sense I was ready.By not doing the surgery, things were only going to get worse&possibly cause irreversible damage.
I was beyond scared! Right up to the point that they zonked me out. I'd seen(read)some horror, the stories where people ended up worse than pre-decompression, etc. (probably all that you've seen&read). And yes,this is a risky surgery,no doubt. But one BIG key is your surgeon! Make sure you're not just comfortable with him, but that you completely trust him w/this specific surgery. I was blunt w/ my Neurosurgeon (I "interviewed" 3, which each were very familiar w/Chiari,but the one I decided upon, I questioned more). I told him I was going to ask questions that questioned his own expertise, even given his experience w/this surgery.
Point being, KNOW & TRUST your surgeon. I went back to him a handful of times w/ more questions before the surgery.By the time of surgery, I'd a kind of personal relationship w/him.He knew a lot about me,he knew my family..I needed feel like I wasn't just "another operation". And I felt far from that by the time I went into surgery. I felt certain under his care.
As for the surgery itself,I was scared about all those big "risks".I was also scared about what would seem like petty things like throwing up (like a serious fear I have in life generally!) as well as what happens in ICU,how bad will the pain be(as I've a low-pain threshold&high tolerance of pain meds.(I'd been on pain meds prior to surgery due to such neck pain-some days, I would be laid up for 8hrs. due to immobilizing neck pain),so pain control was a worry of mine (but I discussed this w/ NS before surgery &the anesthesiologist the day before surgery-my hospital did a kind of "walk through" the day before surgery-as though I was having a baby.I met the staff-a few of which were with me day of surgery),allllll kinds of worries. And I know there is NOTHING I can say that will make you feel ok or not scared.It's scary! You've a right to be scared. But please, if you need to have this surgery just remind yourself of that & go through w/it. There comes a point- where I was-that I knew it needed to be done.
My post-op, immediately after surgery, I don't remember much...except it was a shockingly strange pain but I felt like I was in some alternate reality-brief in&outs-as I think they kept kinda knocking me out. I do recall a blip of being quite non-compliant during a post-op CT they did immediately after surgery... :/ I don't remember anything after that in the "recovery", where I apparently was talking to my mom.Nope, don't recall a bit of that. Nothing until ICU. ICU does go by slowly.I was in&out of sleep non-stop. I'd wake up,thinking I'd slept for 5 hrs &they'd say it's been 1/2 an hour. I just remember every time I thought I'd get into a sleep,I'd wake to vitals, a light flashed in my eyes, more blood work.Always something&given lots of pain meds&nausea meds given. But time went so very slow-even though I was likely never fully/truly "awake".
Then in the step down Neuro.ward, it was much easier..less intense. But pain was certainly an issue. They figured out that certain pain meds, might've been causing migraines...so they changed that one particular med. and sure enough, the intense (couldn't open eyes, total hardcore migraine looking back on it)head pain diminished. Then I felt the expected pain...surgical head pain. (I never did throw up btw. I recall feeling nauseous in ICU, but between meds. to prevent&w/time, the nausea was not even an issue) It was hard to manage my pain and the only regret is that I left the hospital before the pain was managed for a full 24hrs. w/what would be the oral @home meds.
I did not experience any horror stories. I won't tell you it's a breeze. But, today, I'm SO glad I did it- eventhough I'm still in early stages of the full recovery, I'm SO entirely glad it's done! I think the risks that scare us, while real, are low. Such severe complications are likely very low considering that I think there are WAY more "Horror Stories" written online than the good stories. I truly believe that&I believe you will be fine!!!If you're@ a point where surgery is needed- I know you won't regret it.
I went through all the horrible possibilities(the worst outcomes)in my head before the surgery, yet here I am, not toooo bad. The only "complications"/ issues I'm having is that I did leave the hospital too soon-before my pain was at least below a 7/10. I wish I'd refused to leave until I was at @least a 5/10. I know that we can't get out of this pain free, but managed is good. Personally, my advice to you would seriously be to not leave the hospital until you're on the oral meds you'll be taking@ home for a full 24hrs. to see that your pain is effectively managed. Again,we can't be pain FREE, but managed is the key.
Before I left the hospital, I'd already developed a "Big Squishy",as I named it. It was a large fluid filled mound to the right of my incision. Quite a few Neurosurgeon's looked at it- did another CT & they said it was collected fluids, possibly a small CSF leak, but that it was actually nothing to worry about...they said to keep an eye on it, have me a list of things to watch for regarding this "Big Squishy" ( and other things to watch for)..For which it has now migrated down towards the base of my skull, (it had been towards the crown of head, which is where he said he lifted the area to obtain my own tissue for the Dura Patch...he said it could be a little CSF & fluids filling the space from which he took that tissue)& is no longer squishy-it's a hard lump. It hurts&feels heavy,but I'm not finding any of the"watch for"things, so I'm hoping my body will absorb it,as they said.
ANY concern you have, address it until you feel 100% certain you understand. Make sure you get some kind of LITTLE exercises that you can do to prevent neck stiffness&scar tissue as it will already be stiff. I'm a lil' wobbly yes. Make sure someone is around to help you so you don't have to do house stuff&can help you w/food,getting a bath/shower set-up, so many things you don't realize you need help with
I don't know if any of this was of ANY help.It may have not been what you were looking for....a loooong story. But, while yes, there can be complications, but I think the most common one is s CSF leaks/infections&yea, those suck, but even if that were to happen to me (as I know that can still happen 2mo.out from surgery, i also think it's very preventable if you go slow with your recovery¬ push yourself),I now feel like I could deal w/ it. I was stronger than I thought&made it through the surgery&I made it past a 3week post-op now. And while no, it's not some easy peasy deal, I think you'll realize your stronger than you thought!
I'll shut up now. Again, I don't know if this helps you at all! I apologize for such a full story w/details that were likely unnecessary&repetitive. And...that it's SO long.
I hope that if you're @ the point you need to do this surgery, you'll go through with it. Trust me-I don't know if I could've been more scared! But, I did it, I'm here¬hing SO damaging to me. And I'm SO glad I went through with it,already. Despite the recovery that is rough... Patience is the hardest part I think.
All the best, please keep us updated on your surgery!
(So sorry I wrote SO much!!!)