Chiari Malformation Community
do's and don'ts after surgery
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do's and don'ts after surgery

Hi,
I had the surgery 4 June 2012. At this moment I wished I never had the surgery, the pain is excruciating and impossible to describe.  The nurses made me felt like I'm over reacting and it is all in my mind.  I would like to know what are the do's and don’ts after the surgery.  Every time I asked my doctor he just told me nothing.  I don’t know how to lay down, even the pillow hurts my cut if I lay on my back.  Should I move my neck or should I keep my head still.
Can someone please help me?
7 Comments Post a Comment
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1823499_tn?1370093889
The first week was rough but my second and third week I was feelin a bit better. I lay on my side, even now 9 months after I cant lay on my back nor stomach.it will get better for you just relax. Dont do anything for now. I have what mt specialist calls recurring chiari. I had the surgery, it was all good fir maybe 2 minths and now im headed for second surgery. My first ns only did the bone decompression and I need the full surgery now. They gonna open my dura, patch it, put in a mesh plate and repair my muscle damage. You will get thru this. Like I said the first week is the roughest. Hang in there, lots of ice.
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Avatar_m_tn
I used ice on my neck which seemed to help.  Lie down for 30 minutes for every 2 hours your up for 2 weeks to prevent csf leaks.  Take your pain meds and muscle relaxants as prescribed, keep ahead of the pain.  Keep well hydrated, and eat foods that heal protein and calcium, plenty of fruits and veges.  Avoid salty foods that dehydrate you or cause you to retain fluids.  Your body is in a period of inflammation from surgery, best to avoid things that cause inflammation as you heal.  I still only sleep on my side, it is more comfortable on my incision and back of my head.  Time heals.  Rest!!!  
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1925822_tn?1333709217
oh poor sweety...the pain does get better, but it takes a lot of time for some of us...i still find myself with cold towels wrapped around my neck...
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

First, what pain meds r u taking, keep to a schedule even if it means setting ur alarm to wake up to take them, u have to keep ahead of the pain other wise it is hard to control.

Next, u need to move ur neck, there are exercises u should do to help prevent scar tissue from forming and  to prevent the muscles from getting stiff and tight.( use heat for 15 mins b4 and after exercises to help loosen the muscles) Ice is for swelling.
If u scroll to the bottom of this page u will find a hyper lin to the Health Pages were we do have a list of activities to avoid with chiari and syringomyelia.Here is the direct link-http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

For sleeping- if u have a recliner try that for the next 2 weeks, it can help with the position u r in, as it is more like a hospital bed, u were not flat....and u can not roll around.

When u do go into ur bed or if u do not have a recliner...use pillows to prop u on ur side-put one behind ur back so u can half lay on the pillow and then u r not completely on ur side if u know what I mean, but u r not laying on ur back and directly on ur scar...use the side of ur head.....this worked better for me and how the nurses in the hospital set me up in ICU and the reg room...and I did the same at home.

Post op pain can be really bad if u r not keeping up with the meds, but u said the pain is worse then b4 surgery...not sure if u mean u have symptoms that have increased or if this is surgical pain...

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Avatar_m_tn
Hi there,
Thank you for all the advice, I really appreciate it.  I started to feel in hospital that nobody understands how I feel.
The pain is only the pain after the surgery, and the doctor had to work off the sides on my first spine.  I did get a migraine in hospital and even laying on the pillow was sore.  I only got Stilpane that I can take 3 times a day.  They gave me injections while I was in hospital that helped, but now I have this pain medication that is not working.
Thanks again, it is nice to know I'm not alone. There are other people that knows and understands how I feel.
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620923_tn?1405964489

  Let ur Dr know these meds r not helping they may be able to offer a change in meds.....but u do have to keep to a schedule to keep ahead of that pain, otherwise it will not work.

Good Luck and do keep us posted
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1306714_tn?1327260680
No your not alone.  We can feel your pain and we understand.  This forum has been a good place for me to come when I had no where else to turn.  I just celebrated my 2 yr since surgery yesterday so I can tell you it does get better.  Just try to relax and don't try to lift, bend or pull for the next couple of weeks.  I also found a U shaped pillow at Walmart that was less than $10 and it helps me still with the laying down.  I know tomorrow will be a better day, but as others suggesed do look at the exercises to do for the neck.  I never found this out until 8 wks after surgery.  It does help with recovery.  Best of luck.
Linda :)
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