After surgery for Chiari

Question

I was wondering if any one you had the same situation. I'm 3 weeks out from surgery and I was doing really well. Last week I felt like I was really improving now this week the pain has come back. I have trouble falling asleep and when I do I sleep 12 hours and when I wake I feel like I need more sleep. Its feels like I just had surgery. Did anyone experience this??? Thank you

Emme80 · Answer

I've had 8surgeries,...oh, 9...forgot that whole brain one for a second...lol..really!  Yikes.
But, I've healed so much slower than what every surgeon expected. I'm realizing now there was a reason for it. But, I was always soooo hard on myself, would beat myself up over what was wrong with me that I was soooo weak/ unable to be as strong as others to be up&adam like "others". 
Like with surgery, I was(even w/brick) & still am being very hard on myself about the healing process. Doesn't help when I hear my brothers said I'm just being lazy and people w/Cancer are better sports at their health and living active lives everyday than I am right now. So, it unfortunately does feed the own fight I have with myself. I forget that I have 2 autoimmune disorders, EDS and.... It's been one heck of a struggle to manage this while under such high stress that the brick is causing. (Of course, my brother doesn't even speak to me (when he does, it's telling me I'm "a piece of bull****" & "fooling everybody, at the Thanksgiving dinner in front of everybody, of all places), but he doesn't know THAT much about me/my actual health/conditions. But, it certainly-my fault- play into my beating myself up. Then having NS say at 4mo, most are "bouncing back"...
I realize, even without any x-factor to perhaps slow the healing process down, this surgery affects us all in so many different ways. We all heal in our own body's way. 
As with you...who knows, you may be tons tins better in 3monyhs or maybe6. Who knows-
You made a verrrrry good point- you've got the rest of your life to catch up! And to try to do so right now could cause a delay in forward progression. Perhaps this is our time to stop, step back and not control things around us... 
Like learning patience -w/yourself...I think we were talking about those/such  "traits" ...here we're given the opportunity to exercise/learn those attributes. Let's both take that opportunity. I'm glad you're going to relax, don't set an "expectation" for yourself right now. Let your brain heal, nervous system heal...this whole wild Chiari rocketship ride just..settle... Be what it is right now & recover ;) You've many people who seem to love/are more than willing to help out, chip in-take that blessing you've been given-in all the perfect ways it's given. You'll know when to push your body a little and see...but never too much until you know your strength. Bidy & mind ... and brain ;) 
We will both just..take it easy!!!! Together right? But you certainly are still very fresh out of the surgery. I'm very happy you see that you really are still in the acute recovery. And...very big smiles that you, my gorl are gonna..relaxxxx. :) 
<3 <3 <3 
I'll msg. you, check up on ya & let you know if anything works out on my end. Awaiting many new Dr. appts! 
Hugs to you my friend!

selmaS · Answer

Hi...glad you are going to see your Dr about the BP...but it is far too soon to be feeling better....it takes time and you need to take it slowly...if you rush things you can cause set backs....so relax, relax and relax some more <3

Emme80 · Answer

Hey girl !!! I'm sorry to hear you're feeling so crummy. I know for certain, that the recovery is...a slow process. My NS recently, on that horrible last visit, saud "I dint user stand, most people w/this surgery are bouncing back by now", yet prior to this he said it could take @least 6mo. for your body to calm down, begin to adjust.  But, as Selma pointed out to me (and reading her journals, for sure!) , it can really take much longer. There WILL be improvements-day to day/a bad week then a better week, etc.  I had a surprising "good" 2 wks. post op(I thought , wow I feel great given what just happened!). But, as you all know all TOO well, I got smacked with overhelming "brick" complication. My NS had mentioned steroids -both apparently during surgery/hospital and after but I alerted him to my severe adverse reaction to steroids-SO clear in my charts, as I'd ended up in a bad way (took 2 times to confirm NO steroids- ever ever ever!)...it was called "steroid psychosis". So, I know many are put on steroids after surgery, but my experience w/that ended before it began lol.
I too have never experienced such high blood pressure. It's consistently above 130/90. The other day it was 154/100. Pulse 117. So, I'm not getting that at all.  Scary though. 
Remember, you are still in the verrrry early stage of recovery. I know it's hard to feel like you're sitting back and everybody else is doing things for & around you. But, it's essential for you to seriously take it easy right now!!! 
You're body does need sleep to recover, so don't worry about sleeping 12hrs. right now.  I know sleep patterns can get thrown off ...so it may take a bit for it to regulate itself again. 
Go easy on yourself...reading Semlas jorrnals is an interesting & helpful understand about the recovery process. 
As for the blood pressure...I'm there w/ya girl... Mines steadily horrible!!! Between that and my pules, I do worry!
Sending love hugs and prayer your way- remember, you're still very early in the recovery! Take the both the meds as prescribed, don't end up chasing the pain, it'll be worse. I know it's frustrating, but you'll get there! 
Many hugs and prayers to you!!!
<3

The_beat_goes_on · Answer

Steroids can kind of trick you into thinking you feel better than you do, they keep inflammation down.  One of the possible complications of this surgery is sterile meningitis .. which is just inflammation from surgery, and is treated with another round of steroids.  I would try to take it easy and let your NS know how you're feeling.

I'm in the lake conroe area, about an hour north of Houston.

lasel22 · Answer

I was wondering too if you might be tapering off steroids. I was on them briefly after surgery and when as I tapered off I felt sick.  Also, 3 weeks is very early in recovery for this surgery so you will feel ups and downs. I went from walking 1-2 miles a day to doing 4 one day about 7 weeks post op and I felt bad for a week afterwards. I had overdid it and paid for it.  sometimes I still get hit with major fatigue and need to take a nap and I am 3 months post op.