Chiari Malformation Community
Recovery *****
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Recovery *****

I know it may seem naive but I really thought I would bounce back better. It will be a month in 2 days since I had my surgery. Beside this surgery I had only previously been to the hospital to give birth. I read everyone's stories and comments and thought..... Oh no I'll be fine. I have always been strong and had a high tolerance for pain. I just pop a few Motrin and I'm on my way but this time I'm destroyed. Do not misunderstand me I have read some stories that literally have me staring @ the screen crying. I know I'm lucky. I'm up walking around without help or use or a cane/walker. I bathe and dress myself although my mom moved in and sits here waiting for me to fall over. The thing is I'm in constant discomfort, I'm always tired, I can't walk to the kitchen to get a drink without feeling like I need to sit down. My neck feels like jello and I can barely hold my head up most of the time. Sometimes I sit or walk around with a neck pillow looking like a fool. I do my exercises but I still feel so weak. I know I'm being a big baby and it may take months before I feel better but I'm just not use to being like this. I want to get up and do things an my body is working against me. Just needed to complain thanks.
6 Comments Post a Comment
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4489852_tn?1375757551
Hi Veronica,

I am nearly two months post op, so not that much further along than you :) At a little less than a month post op I was feeling the same way. I just felt like my body was betraying me and i couldn't handle it.

Luckily after that seems to change. Now this is only my experience and I have heard different things from other people. Also, keep in mind that I am young, 19, so this might change my recovery. After about a month I was noticing week after week that my energy level was going back up. Slowly but surely it continues to return, I am not at 100% but I can tell each week I am doing better.

As far as the neck goes as hard as it I would try to not use the neck pillow. I was crushed when my NS suggested I stop using one and at first it was AWFUL, but slowly my neck began to regain strength for itself and I can now not rely on a neck pillow, although I do prop it up at night when I am reading or so forth. Also, make sure to keep taking the muscle relaxers as you need them. This really helped me when my neck was feeling weak or shaky. They stop the muscle spasms from occurring.


I also have at least one related condition, and we are testing for more, that has affected my recovery. If you have not already done so you may want to rule out conditions that are related to chiari (POTS, EDS, ICP, Tethered cord, cranial instability, etc). There are many more and I do not pretend to be an expert on any of these, but I will do my best to explain if you have questions. Also, what you had done (duraplasty and what type of patch, laminectomy, etc.) will effect your recovery.

Again, this is just my experience so you have to keep in mind that every person has a different recovery.

Good luck!
Sara
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620923_tn?1405964489

  This is when we need patience the most....we can not try and rush things....as it can cause set backs....

  the most important thing for u to do is Rest, rest, rest.....

  walking and neck exercises is something u need to do several times a day, but start slowly and add as u can....

  ((hugs))

  
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1925822_tn?1333709217
I feel the exact same thing.i went thru decompression and found recovery to be honest very tough. I just had fusion and really naivly thought that it wont be such a big deal....i find it as hard as decompression recovery i swear and find myself being bedbound and showered by my bf again....i also feel stupid as i should have known better.i broke out in tears yesterday for at least an.hour....but honestly people who ve never been thru wont know what it means...i was arguing with a friend a little who told me be happy u can still speak and move...i said pardon me i am...but in 2yeara i found myself from bedbound to bedbound again...30yrars old and needing help for everything...i am sending u a big hug.know u r not alone and vent...i need it too
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1306714_tn?1327260680
It is hard to except right away that we can't get back what we used to have or be, but it is an excepting issue.  Having decompression surgery isn't a cure and please realize all what they had to do to get where they needed to do.  It's a very rough surgery and we are some times to hard on our selves.  I know I was the same way and it was people on here to remind me of being patient with myself, and just take one day at a time or we set ourself up for disappointment.  REST,  and enjoy this time.  Tomorrow will be a better, stronger day.
Linda :)
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4816750_tn?1368808270
Hello,

I know this is hard for you to think I should be better.  Well, you had a very rough and serious surgery.  I had both decommpression and fusion in two places.  Yes it is going to take some time.  It took me about three months to feel like I could have enough streth to do anything.  But it will come back.  Remember yyour body tells you what is best for it to heal.  Iff you try to rush things you have set backs and that is not good.  Like the old wise man says "patients grasshopper"
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Avatar_f_tn
It's hard to wait...I know!  I'm almost 8 months post op decompression and fusion skull to c2.  It does get better.  I know I felt I would "plateau" then all of a sudden, I would make some progress.  Be kind to yourself and remember that none of us are superheros, nor are we expected to be.  Allow yourself time to heal and you will be surprised.  :)
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