Chiari Malformation Community
Update on my surgery 5/27
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Update on my surgery 5/27

My surgery went very well and my surgeon was pleased. Everything went as planned...except they ended up not having to remove my cerebellar tonsils, so my brain got to stay intact.  He said it seems that I have enough room in there now that he removed a lot of bone and enlarged the space around my brainstem. My herniation was 15mm, by the way.

The first 36 hours post-op were sheer hell, you guys. I never even imagined pain that bad. They were giving me dilaudid, morphine, percocet and valium and I was still crying, shaking and vomiting from the pain. I couldn't move at all, I could only stay flat on my back lying on my incision. It was effing brutal. I was unable to sleep for the whole 36 hours because of the pain, which in my opinion was just exacerbating the pain because I just could.not.relax those muscles. It was total hell, I'm not gonna sugarcoat it.

Then last night (night 2 post-op), I demanded to see a neurosurgeon on call. He came in and saw how much pain I was in and drastically increased my pain meds, increased the valium and added another muscle relaxant, Robaxin. OMG, the relief was amazing! And I was able to sleep all night last night. When I woke up today, the difference was amazing. I was in maybe 1/4 as much pain, could walk around, talk, stopped throwing up, and was actually feeling pretty good! That sleep made an incredible difference. I stopped taking IV meds, and they decided to release me. The biggest post-op risk of this surgery is infection, so they want you out of there ASAP and in your own familiar germs.

So my husband and I came home to our lake house to recover. I am feeling much better. I was soooo gross - sweaty and covered with puke and my hair was full of blood so my sweet husband just got in the shower with me and washed my hair and body for me. With how disgusting I was - THAT is true love!  I can't really do much and I'm still in a lot of pain of course, but everyone is taking amazing care of me. I can't turn my neck much, I can't lift my arms higher than my chest (so button-up shirts are very important), and I can't lay on my side still, only on my back. Lying on my side hurts my neck muscles too much.

Also, I now feel very lucky to have made it through surgery. I was in pre-op with another woman, and she was having the same surgery as me with the same neurosurgeon. She went first...and she didn't make it. She died during surgery...there is a thread here about her, Kristi was her name.  So heartbreaking!!! I feel so grateful to be here and recovering well, but so sad for her and her family. Life is so tenuous.

I'm not going to post it in the thread because it's icky, but if anyone wants to see my "zipperhead", here is a pic for you to cut and paste into your browser:
http://farm6.static.flickr.com/5228/5773032866_613ee13b5a.jpg

It's not too bad, I think! It was taken at 48 hours post-op. They used dermabond and it seems to be healing pretty well. I had this done at the Cleveland Clinic, endoscopically. If you have any questions, feel free to ask. And if you're about to have the surgery done....let me advise you: muscle relaxers are KEY!! Get as many as you can!!!! They are the only thing keeping me in low-pain right now at 2 days post-op.
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1690602_tn?1306717671
Hi Junebug,
Sorry for the initial pain, but glad to hear you're recovering so well! I will be sure to ask about the possibility of endoscopic surgery: it's impressive how quickly you were back on your feet :)
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1435895_tn?1304294841
Thankfully you are recovering ok.  I was worried when I found out about Kristi.  My doc used something called Sufentinil IV and I didnt have that much pain. It was pretty amazing.  My friend Michelle didnt either and we were both able to use our pillow within a few hours of surgery as I couldnt lie on my incision.  Please remember to go slow... dont overdo it.  Regardless of how much better you feel.... GO SLOW!  
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Avatar_f_tn
I am going slow for sure. I've been sleeping a good 18 hours a day since they tweaked my meds. I try to get up and walk here and there too. It's slow going, but I'm just listening to my body.....
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620923_tn?1416285879


  So glad to hear from u and surprised as well...it is so soon!!! Glad u got the pain more manageable and home and resting.

Praying ur recovery is uneventful....

  Be sure to move ur neck, slowly, but get it moving!!!

    "selma"
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Avatar_f_tn
Thanks, I am trying to move my neck slowly. Still hurts to lay on my side (because the pressure on my neck muscles) but I can turn my head maybe 20 degrees in each direction. Improvement!

Remember, people - muscle relaxants are your friend after surgery!!! I'd be crying without them!
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1451338_tn?1413478623
Glad your surgery went well and you're on your way to recovery! I will keep you in my prayers for your continued healing! And thank you for your words of advice! I'm scheduled for surgery on 6/27! ACK!!!! I'm going out and buying button up shirts, today!!! LMAO!!!!
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1451338_tn?1413478623
Great post-op pic, BTW! =)
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1547116_tn?1315830361
I hope your healing continues nicely. Good luck.
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Avatar_f_tn
Thanks - and may I also recommend some stretchy microfiber type bras that you can step in to and pull up. I had a hard time putting anything over my head, and regular bras are still a little uncomfortable for me.

Other than that, it's 5 days post op and I'm doing very well. I even went out with my family for ice cream last night!
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