I've had quite a bumpy ride after what I thought would be a "routine" procedure with a 3 week recovery. My story has turned out much different than I envisioned and after having my decompression on January 4th of this year, I am looking at my 5 month anniversary today and thinking of what a road it has been and the challenges I still have ahead of me. After getting hit with hydrocephalus and aseptic meningitis after the surgery, I know it's finally time to talk with you all and hopefully #1 share my experience to help you be more informed about this "thing" we suffer with, and #2 hopefully get some input and advice going forward.
My name is Anthony and I turned 37 years old this past Sunday. I've talked with a few of you prior to my decompression but haven't been online, mainly due to the amount of stress that's been going on.
I've suffered from severe migraines for around 15+ years, sometimes getting them up to 4-5 times per week along with severe neck pain. I was diagnosed with a degenerative disc back around 2003 I think. I was seeing a neurologist at that time and he did a brain MRI (2005) to rule things out. The results came back and the neuro's words to me were "your brain is slightly enlarged but it's nothing to worry about at this point". I'd love to get the films but unfortunately the imaging firm destroyed them since I hadn't been back since then, and the neuro moved his practice to Las Vegas (I'm in Cleveland, OH).
I went along since then blaming everything but the weather outside on my "degenerative disc" as well as my migraines. But since I was in my early 20's something wasn't right. It wasn't just pain but HORRIBLE lethargy, overall pain and weakness, shakiness, pain in my eyes... lots of stuff a normal guy in his 20's with almost perfect labs and test results should have.
Over the past 3 years my symptoms seemed to have increased substantially along with a lot of pain, numbness and tingling going down my arms AND legs along with what appeared to be sciatica. I also developed some alarming sleep apnea (I'm 6'0" and 150lb, so it's not a weight issue but my wife says I stop breathing constantly and I wake up feeling like I got hit by a truck). My eye pain increased, etc.
I started seeing my wife's pain management doc (who if you can believe is A REAL doctor and diagnostician, not just a pill pusher. My wife is a whole other story book, who has been suffering from out of control Crohn's disease, RA, Fibro, a host of other auto-immune diseases that keep her pretty much bed-ridden 24/7. It's been a rough 5 or so years for us. Very rough). This PM doc did the gamut of MRI's... I was complaining most about my back and pain shooting down my leg (and in my butt) at that time. Doc's ask me what's worse, my head/neck, OR my back. WELL... If you ask me this week it's my migraines and neck... next week it may be my back. There's no way I could choose one I don't think. They're both debilitating at times (often times). So at that point he decided to do a lower lumbar MRI. Results didn't show anything TOO terrible... some degeneration and some early arthritis, but nothing to the point I was describing.
He decided something else must be going on and had me come back in for an EMG test to check for nerve damage. Sure enough, he was actually alarmed at the amount of nerve damage he found EVERYWHERE he tested. He directed me to go get a brain MRI asap.
I did, and the results came back showing my Chiari and I was of course referred to a NS at the Cleveland Clinic. We discussed things and I learned about this new "thing" I have and was actually glad to give it a name and be able to blame all this craziness on SOMETHING. I had a 10-12mm herniation and we discussed surgery options as the other treatment options (PT, meds, etc.) hadn't really done much to help me.
So as I said, I had the surgery Jan 4th this year. I was told approx 3 week recovery.
Surgery seemed to go well. I was home after a handful of days and up on my feet walking, talking, smiling, feeling "OK" for the most part.
About 2 weeks after coming home I noticed a major decline in the way I felt. Mainly I had EXCRUCIATING PAIN in my lower back. Now, I'm NO stranger to back pain, but this was 180 degrees different than EVER before. To the point where if I would even LIGHTLY TOUCH my lower back I'd be screaming and hanging from the ceiling in pain!
BUT... I figured I just underwent quite a big surgery, and I've not been moving a lot so maybe it's just really locked up and the muscles are doing something weird (but in retrospect I knew better than that). I hadn't been doing my usual 20-30 minute nightly stretching routine (couldn't) and thought it could be due to being immobile.
I got a hold of my doc. They prescribed a Medrol dose pack (steroids) which made it feel better for a couple weeks, then it came back with a vengeance. I then went back to Pain Management where they did a steroid injection into my back which made it somewhat worse the first few days but I believe gave me SOME relief for a week or so.
Finally at the end of February, almost 2 months out, I had been FLAT on my back doing nothing but laying on a hot water bottle in pain for the past 2 months and my symptoms kept getting worse and worse.
I had headaches throughout this whole time, but by this point it was the mother of ALL headaches, like nothing I've ever gone through. I really felt like my head was going to explode. I could do nothing but lay rolled in a ball in a dark room holding my head.
The final 2 nights my body would NOT let me sleep... I'd drift off a bit and jump up gasping for air. My breathing was becoming affected severely and my heart rate was not good.
Called NS and he recommended I call an ambulance based on what I was telling him.
Back to hospital, CT scans and MRI's. They found that I had aseptic meningitis (infection in the brain) as well as hydrocephalus (swelling in the brain). They put me in ICU and drilled a hole in the top of my head (I got to keep the drill!) and installed a temporary drain tube to drain the excess fluid and relieve the pressure.
I remained rolled in a ball for probably 4-5 more days as the antibiotics took effect and the fluid drained, but finally started feeling better overall. I was in ICU for 9-10 days during that time.
Back home after that. They of course had me on steroids again during hospital stay and for a little while when I got home. And as I feared, once they wore off, my (excruciating) back pain returned and still exists where I can't even touch my back. And in all honesty, if I press on my lower back with the LIGHTEST amount of pressure, I'm screaming in pain (which has been the case since 2 weeks after the surgery). The pain wakes me up sometimes every hour and I need to get out of bed and do exercises given by Phys. Therapy. NS says this is probably from the meningitis settling in my lower back, but I'm not 100% convinced. I mean, 5 months later and I still can't put ANY pressure on it and still laying on a hot water bottle all the time? It just seems that something is not right, and this is for sure something that started DIRECTLY AFTER the surgery.
It IS improving, but it is painfully slow. If i look at YESTERDAY, I get frustrated. But if I look back 2 weeks or a month I can see progress. There are several mental changes I wasn't really prepared for before the surgery. My anxiety is overwhelming at times. I am almost "afraid" of a lot of things and situations where I'd have never had these irrational fears in the past (I've made over 500 skydives in my life - I'm not a very timid type personality by nature), but understand that when you go through this, you go through A LOT!
The GOOD news is that my headaches have decreased for SURE! I get a lot less, and when I do get them, they're less severe. So I believe we made progress in that regard and I think for the future the surgery would have ultimately been worth it. It's just frustrating because I'm not really out of the woods yet - and in retrospect if we didn't get me back in the hospital when we did, that infection could (would) have killed me. I ended up having to use every last ounce of paid time off from work (don't mistake my, I am BLESSED I had it available, but it's scary and for example we rushed my wife to the E.R. Monday for a flare-up where she sits now, and I can't take time off to help her). We're LUCKY IN LOVE, the two of us... but not so lucky with much else just yet. :)
I feel bad in some ways sharing this. I don't want to scare anyone off. But you must prepare yourself for things like this. I was not prepared to be laid up and unable to work for several months. But it happened! What can you do.
Know the risks, AND the benefits, and weigh them out - but DO be prepared for the worst (and hope for the best). Things can happen, even though the chances are slim!
Trust what's in your heart. BE SURE you TRUST your surgeon. If not, find another one. You MUST be confident in your NS, period! I'm sure there are tons more details, but that's the main part of my story. I'd love to hear any feedback.
I'd especially love to hear any of your thoughts on this back issue, since this IS NOT NORMAL and still has me quite worried and concerned.
I hope this story is of value to the forum and someone can benefit from it!
Warm regards,
Anthony DeMichael
