For those that have had the decompression surgery… How long was ur recovery time? Do u think the surgery was worth it? How bad was the initial pain? I really want to kno EVERYTHING there is to kno about the weeks following the surgery. I’m terrified to have it done. Has anyone encountered probs that were worse after the surgery than before? Kno of anyone who has been paralyzed or gravely injured from the surgery? I mean, they’re messing around with a dangerous area. I kno they’re specialists, but… I think I have thought of every bad scenario there is. I’ve never been this scared in my life!
Hey Brenda! Nice to meet you:)
I was diagnosed with Chiari and Syringomyelia in April 2003. I had decompression July 2003. It was totally worth it for me. Before I even knew what I had...I was missing a lot of school from the head and neck pain. I was waking up literally every morning and had to puke because the pain was so bad. I would wake up and run to the bathroom. Sometimes that made me feel better, other times it didn't and I wouldn't go to school. Once they figured out what was wrong and the NS had a few MRI's done he suggested surgery. At that time I was 15. Honestly I wasn't worried about anything/thinking about anything other than making the pain stop. I didn't fully understand what was going on. I didn't even think to research what I had. The NS suggested that I get 2 other NS opinions before I made my decision as decompression was not a cure. He didn't want to do surgery unless I was 100% sure. Like I said...I just wanted the pain to stop and I wasn't understanding what all was going on. I didn't have anywhere to go and talk to anyone else who was going through it/already been through. Nor did I even think about it. I decided not to get any 2nd opinions because this NS seemed to know what he was talking about and I had a good feeling about him. Mom and Dad said it was up to me, that it was my decision and we could get a 2nd opinion if I wanted. I decided to just go with Dr. Schlegel and get it done and over with. All I was worried about with the surgery was the fact that they were shaving part of my hair. (Typical teenager I guess) I didn't have questions for him, I didn't think of any.
The surgery took I think about 5-7 hours (I don't remember). I brought my pillowperson with me (Do you remember pillow people from the 80's? I have had one since I was 3...I still sleep with it and will be burried with it.) to surgery. lol They put me to sleep etc they did explain what was going to happen..but I don't remember much.
After surgery/recovery area then I was taken to ICU for about 1-2 days. Dr. Schlegel said it was good that they got in there when they did because the back of my skull was eggshell thin. There was so much pressure back there. They had my on meds (I think percocet) I couldn't keep any food down whatsoever. I was vomitting bad. The head pain was worse than before during the whole recovery. It felt like my brain was pushing out everywhere. (I don't know if it had to do with the Percocet...I need to see if there is a link between those...ABBY you're the research queen...do you know anything about this?) They moved me to pediatrics (WORST thing ever.) All I was "eating" was ice chips...I couldn't drink or eat anything without it coming back up. They said the only way I could go home was if I was able to start walking around and kept food down. I got a phone call from my youth group leader towards the end of one week...talking to her must've been the motivation I needed to get up. I was determined to get out of that hospital and get home. They made me take walks around the nurses stations, I had to be able to walk by myself. And keep some food down. I had something small. They released me the next day. I was in the hospital for a little over a week. The car ride home was horrible. The hospital is 45 mins from my house. Its a windy bumpy road. Prepare yourself for the car ride home as well! Take fluffy pillows. Sit in the back seat (might have to lounge) or front seat reclined. I couldnt see the whole time because I wouldn't dare put my glasses on (didn't want to hurt my head more) that made me a bit dizzy. Also take a barf bag just in case.
After I got home it was another 2-3 weeks of the same not keeping food down, Percocet not helping one bit. I couldn't sleep at all. Mom bought pedialyte so I would be able to get something down. I was slowing starting to get drinks down. Still was living on ice chips. Went back to NS for check up/get stitches out. He perscribed me something else for pain and to help me sleep (wish I knew what it was, I can't remember for the life of me. My mom either.) That was like a miracle drug. I slept and then I could eat. Then the pain started to go away.
Overall it took about 4 weeks to get myself eating and walking around doing stuff on my own.
Surgery was worth it for me for a few reasons....One..I'm not puking every morning. I can function. Two..obviously there was a lot of pressure for the fact that my skull was eggshell thin. Three...I am in less pain in some ways. Though I have had more symptoms arise. Whether they are a result of the surgery or just Chiari picking and choosing to show up with new crap.
You have an advantage of looking up research. As well as this site. Asking the questions is a great thing for you to do! Ask all the questions you have.
I don't want to scare you with all I said up there. (Once I started typing I couldn't stop. lol) That was my personal experience and it is different for everyone. I'd also look at if you've had pain medicines before...what has helped you and what hasn't. If you know that certain pain meds haven't helped you before. Say something so they don't put you on those and have to trial and error.
I'd like to find out what pain medicine everyone was on after they had the decompression surgery. I really want to find out if there is a link to percocet and the pain I had afterwards. The reason I say this is because I met someone on facebook who had a similar issue with the percocet and pain. They were told afterwards that they should've been on it. (I don't know that its true. So don't take what I said to heart. Ask your doctor)
I hope this helps you some! Don't hesitate to ask more questions:)
We're all here for you!! Good Luck and you're in our prayers!
-Alicia
Yeah, I wasn’t sure on the percocet. Up until I heard someone else say it was the worst they could give you after the decompression, it made me think maybe that affected me bad. Previously I’ve always thought it had no effect whatsoever. I did have a morphine drip, I think. Maybe that affected me bad. As I’ve said before, I didn’t pay much attention to what was going on at the time. I really wish I did, but all I was focused on was how much pain I was in. Then again, it may not have anything to do with meds at all, it could’ve just been the pain to recovery. There are hardly words for the pain I had during recovery. It was unbearable.
Susan Erickson said:
Abby,
I can’t tolerate Morphine either. It wears off in about 3 seconds and then it gives me a headache from hell.We are all different with meds. Just like Chiari is different for each of us…Meds are the same way. Sometimes it takes trial and error. But if you have ever had any sort of pain meds, its good to know what has or hasn’t worked in the past if possible. But they will do everything they can to make you comfortable, especially if you have surgery. Heck, I complained every 30 mins. I think they gave me every medicine in the world!!! LOL. Hopefully you’ve had something at some point that will give you a good start point my friend!!!
Brenda, I as well as anyone else here will help with information and experience that we can!!! So bring on the questions my friend!!! That’s what we are here for!!!
Much love and prayers!!!
Susan
Brenda, you sound just like me a few weeks ago! I was SO terrified! But you know what? DO IT!!! You will feel so much better and you will have HOPE!!! It has been 6 weeks for me and things are looking up! It’s not an easy surgery, but it’s not that bad either. Take things one day at a time and put it all in God’s hands. When you get to the hospital let them take care of you and ask for pain meds as often as you need them. (They can only say it’s not time yet.) Have them put pillows on either side of your head so that your head is not touching the bed and ask for ice packs to also put on the side of your head. After the first week, things are a lot better. Stay positive and plan for the future! God Bless
I had every little pain after surgery. went strait to a regular nero floor and was home the next day by 5 p,m,
Mine was done with a scope first of all. My incision was not as big as most pictures I have seen on here. I was achy but hardly no pain. I also have a very high pain tolerence. I also was up walking the next day. I have beengood since surgery. I have a little shoulder pain now and then. I am not really sure what is causing the back pain. It could be one of three things normal, chairi, or tethered cord related. I also think my muscle tics are back a little but my symptoms seem to be gone. I go back to the surgeon the end of june. I will see then if anything shows in the MRI. About if it was a success for me yes it was. I am walking better, no headaches and other things I can't think of right now. If anyone lives in Kansas city and needs a doctor mine just moved to Kansas. His name is Dr.Xiao Di. not sure where yet. he has a fan site on facebook.
Dan
Your fears are very normal. I went through hell and back through my journey which wasn't a very long one compared to most other people. I have horrible nystagmus that my eye doctor caught and he sent me immediately for the brain MRI b/c he suspected a brain tumor and of course it wasn't that but the chiari. I have always been a good catholic and have always believed in God and the power of prayers, but through my whole ordeal my faith got even stronger than I ever thought possible. On those days when I just wanted to give up b/c I was DONE I could feel God picking me up and then setting me down very gently when he realized I was okay again to handle things.
I do have a caringbridge website if you would like to check it out; it is www.caringbridge.org/visit/kodiduhon.
So my chairi friend, have faith in the good Lord above and pray and pray and pray, he will lead you to the right decision!