It seems like there are a lot of people with the decompression surgery coming up. I thought that I would throw out there the things that worked for me. Obviously do what your MD wants first, but these things helped me and would have loved to know going into it. The fear of the unknown is half of the battle. For a little background, I had the decompression surgery including a craniectomy, laminectomy and duraplasty August 7. Preop I had an 8mm herniation and severe blockage of my CSF, I did get a small leak just after 2 weeks postop that resolved on its own with bedrest.
1. Make sure to take one of your own pillows to the hospital. I found that a pillow that was a little bit fluffy but also had support was the best. I invested in a good pillow and it made a world of difference. Make sure that you have a pillow protector and I also got some dark pillowcases. I did end up getting some drainage on the pillowcase, and was happy I had the protector so it didn't go through all the way to my pillow. Also it helps to sleep elevated. I got a couple of wedge pillows and used those once I got home. A comfy blanket from home is nice, hospital linens are definitely not something to write home about!
2. It is really nice to come home to a clean house! I am no where near a neat freak, but I spent the week before doing a deep clean of my house. I know with the symptoms that we experience that doesn't feel possible, but it at least took my mind off of everything that was going on. ACCEPT HELP! I learned that my friends and family felt helpless and wanted to be able to do something and when I allowed them, it also helped them to feel better.
3. Freeze meals to have ready for when you get home. I am single, so it is just me. When I came back to my house I was still unable to drive (my driving restrictions were lifted 3 weeks post op). I had a whole bunch of soups and things that I knew I would eat. That way it was one less thing that I had to ask somebody for.
4. The first 2 weeks are rough...but it was still not as bad as I expected. My surgeon told me "recovery doesn't really start until after the first 2 weeks." Is it painful, yes. However, don't hesitate to call your surgeon if the meds you are on are not working. Like I said, I expected it to be worse. I know that this is not the case for everybody, but I am one of the success stories and had IMMEDIATE relief of my symptoms (when I first woke up the first words out of my mouth were "I didn't die". The next ones were "I feel like me again"). Now, you trade it off for a different kind of pain, but I would do it again in a heartbeat. Once I hit the 3 week mark or so, I did see myself improving. It is slow and steady at that point. The only thing that I can compare it to is having a baby (which I have not). Those weeks are a blur now and well worth it because it paid off in the end.
5. TAKE IT EASY! I learned this the hard way. You will get tired very very easily. Increase your activity incredibly slow. Most of the time you don't realize you did too much until it is already over! Your body is going to need tons of rest in order to heal. I will be 8 weeks out tomorrow and started back to work last week and only did 3 shifts that were 4 hours long. I have been off for 7 months. I basically slept a day and a half after the first one!
6. Move your neck as soon and often as possible. Gentle range of motion helps it from becoming too stiff (obviously make sure that this is ok with your surgeon). Then the nurse in me will remind you to get out of bed to the chair as soon as you can too.
7. Ice packs were very helpful. I put them on my neck and head. The gel ones (that you can get at any pharmacy pretty cheap) worked the best because you can mold them and they were soft.
8. Get some baby shampoo. My surgeon had me using it for about 4 weeks until the incision was healed. Shockingly, it works well and smells good :)
9. If you have an iphone/smartphone, I downloaded the app called dose organizer. I was on a lot of meds on an every 3 hour schedule when I came home. It was nice because you could make it alarm, confirm you took it, take pictures of the meds and see a history of what you took when. For the first week or so, I would set it to wake me up, that way I didn't wake up in extreme pain and kept it under control. It is so much easier to keep pain under control than it is for it to get crazy and try to play catch up.
10. Muscle relaxers are your friend!
11. Finally (well, I will probably add to this as I think of it), don't deny your fears and concerns. This is clearly a big surgery and I know that I was terrified going into it, but excited at the same time. Most of us try to protect those closest to us about what we are worried about. I promise though that they are worried too. Find someone you can talk to or get on here for support. Try to keep as positive of an attitude as possible. Don't get me wrong, I still have my moments, but I believe 100% that your attitude does impact your recovery.
I hope I am not coming off as a 'know it all'...because I don't! Some things may work for some people and some not. Be patient with yourself and remind yourself that you can do this!! I will be thinking of you all and I hope and pray that you find some relief!
