I had surgery on Sept 3rd with Dr. Oro in Colorado. What an amazing neurosurgical team and hospital (The Medical Center of Aurora)! I'm just over a month out from surgery and I would love insight from all of you who have had surgery and made it through recovery. What is the best way to recover? I'm doing pretty well, but I still have a lot of pain under my skull and neck pain. It still feels like I have rocks, knots and kind of like knives in my neck. Also along my incision line I have a lot of really sensitive spots. It kind of feels like someone took a string and pulled it really tight and now there are lot of spots of bundles of nerves & tight spots. Sorry, not so sure how to explain it.
I would like to ask for advice on the best way to recover -- what is good to do and not do to work out and through the pain? Will it go away or is this my new pain baseline? I'm starting PT next week so I'm hoping that can work out some of the pain, but not really sure what to expect. Is it wise to start doing many things or to try and be very active? Also, what's the best way to deal with the pain meds. I'd really like to drive soon, but my np said that it's best to take the meds if there is still real pain so that it doesn't become chronic pain.
I'd love any and all insight all of you might have.
Thanks for your help and also I'm so thankful to Jesus that I'm post op. I was really afraid of the surgery and just didn't know what to expect, but am so thankful to all the people who prayed for me and helped take care of me.
Thanks to all who helped me in the process of getting to a specialist! It was definitely worth it to go to a specialist!
So a couple of days ago I decided to write my experience of surgery while I still remembered it. SO first thing, the night before we drove up to a hotel in durham and it was really nice. My soccer coach aka my other dad paid for it for us. My aunt surprised me there and we ate there for dinner and they had really good pasta! Anyways the next morning I went to the hospital for as pre op, and I was scared. The lady checked my blood pressure and my temperature and and everything went good until it started getting closer to time. She then had to stick me with an IV and the first time I ‘moved’ and so she had to redo it. My aunt and mom had to hold me down. After she did it I met my anesthesiologist and she was really nice and made me feel relieved because I asked her 1000000 questions about if i would die or not. Then she said she would take amazing care of me and do her best but I could die like in any case but I still trusted her. My surgeon also came in and let me know how much hair he was going to have to shave and how long the cut would be and all those details. After they left the nurse put stuff in my IV to calm me down and the last thing I remember is being rolled into a room with a bunch of doctors I have not met before. I asked if I was going to be okay (Of course I was under medication about this time so I was being loopy) and then it went black. The next thing I remember is being in a place where I was before I had the surgery and I was completely out of it. My mom said every nurse that came to me I would grab her hand and ask if she could put a pillow under my head cause I was so uncomfortable but they all said no because that could mess things up. When they said “no” I would politely say “okay” in a baby voice and would repeat to the next. Then I blacked out again. Sooner I woke up, and I was up. My mom and aunt were there but then my aunt had to leave. I was in excruciating pain. At that time I was okay with dying. I never felt like that before until then. I was in so much pain if dying was an option I would of definitely took it. I couldn't move, and EVERYTHING from my neck up was throbbing. Also from a tube being in my throat to control my breathing, my throat was killing me (it stretched that ball hanging in the back of my throat which from that I can now touch with my tongue) . All the nurses I had were great. They had to come in every hour or so and check everything on me. And that actually opened my eyes to maybe become that when I’m older, but anyways I asked my nurse for something to help my throat pain once and so she gave me a popsicle….. WORST MISTAKE EVER. After I ate it it did not even help and I threw up for an hour. Now Imagine this, Having the back of your neck split open and then vomiting. I dont have the words to describe how horrible that was, once again I wanted to die. I couldn't eat anything the 4 days i was there either. The pain medicine I was on still wasn't enough. I woke up every hour or so at night in pain. I felt disgusting because I couldn't shower. After the surgery and I returned home I had to be homebound from school for a month and I basically was depressed. Yeah I had friends who texted me and came to see me every now and then but me not seeing them everyday and all that definitely impacted my friendship with them. My two best friends I had at the time aren’t even my friends anymore due to drifting. I definitely made some new friends out of it but it wasn’t worth it. Overall my experience with this surgery sucks. I am not the same person I was before it but I definitely think I am a much stronger person and I believe no matter how horrible things get it will always get better. 5 days ago made 6 months since I had this life changing event and I honestly am so proud. My hair is growing back, my scar is healing, my headaches are definitely reduced. If you asked me three months ago if I recommend it, I would of told you heck no. Now, I would say yes. It definitely decreased my pain levels (It doesn't take all the pain away, I still have some every now and then) and gave me a new perspective on things. I definitely think if you're going to have it you should see D. Fuchs at Duke, (if you’re under 18 like me). This is my story and I really hope this helps someone.
I’ve not had surgery yet so I can only go based on what info I’ve gotten from my NS office. He requires all new patients to watch his one hour webinar on chiari surgery. I rolled my eyes at the thought, but I’ve watched it five times so far!!
One thing he notes is that when they cut you, they first have to separate and move all the muscles in that part of your neck. They don’t cut them, they just move them to the left and right to get beneath them. He clearly indicates that muscle issue is the hardest thing people face after surgery. Apparently our muscles really don’t like to be jacked with!
I’m not sure if that’s helpful, but it may explain some of the odd feelings your having near your incision.
Good luck with your continued recovery!