What to expect after Chiari decompression surgery?

[lindseyk221]

Hi, I'm a 19 year old female who has been diagnosed with Chiari I Malformation (12.3 mm). I am having surgery in a couple of weeks (decompression, laminectomy, duraplasty). I'm just wondering what it is like waking up right after surgery. Will I be able to walk, breathe on my own, talk, stay awake? I am interested in hearing what others experienced as soon as the woke up and how long it took them to be able to accomplish simple tasks.

[Lottida]

Hi I too woke up in ICU with oxygen on, 2 IV's flowing & an arterial line in my wrist.  My incision was painful BUT the nurses were really good about making sure that I got pain meds to keep the pain under control.  I will say that my neck was really stiff (from the laminectomy)!!!!  I felt that the pain was tolerable considering that I just had brain surgery (even tho they don't really do surgery on your brain).  I was not allowed to get out of bed while I had the arterial line which was pretty much the 1 night in ICU.  I then spent 1 night on the neuro floor then went home.  While on the neuro floor, I was walking SLOWLY down the hall for short distances   Also I wanted to tell you to be careful with scratching your head if itching.........I was not aware that I had 2 staples on each temple area & on top of my head because this is where the stabilizing probes were placed (its like a Halo machine that keeps your head in place during the surgery).  Not everyone gets staples to these sites but mine bled a lot.

As the other posters said, make sure to rest as much as possible.  It is very hard at times because you start to feel better & want to do more than you should be doing.  Make sure to prepare yourself to refrain from coughing, sneezing or straining for quite sometime.......all of these things cause pressure on brain.  I had a sneezing attack due to something sprayed in my house during my 5th week post op & I popped the fibrin glue off of my durapatch which caused a CSF leak.  Please know that when I say a sneezing attack I mean like sneezing 20 times in a row!!!!!!  Anyway I had to go back to surgery 9 weeks later.  I am now almost 6 weeks post op from the 2nd surgery & doing great!!!!  I should be going back to work in a couple of weeks.  So maybe let everyone in your house know not to spray anything new to avoid the risk of sneezing or coughing.  I hope your surgery is a success & wishing you a smooth recovery!!! :)

[Bellum990]

For me, I was also aware immediately following my surgery. I remember waking up in the ICU and my girlfriend and parents pointed out a welt on my head from the device used to fix my head in place during surgery. I remember responding "you should see the other guy". Everyone laughed and they realized at that point I must be ok.

My surgery was completed around 11PM, and so my first night in the ICU was rough for me. I was very nauseous and vomited a few times, but that was my own reaction to the anesthesia. My oxygen levels were also low, so I was placed on oxygen for my first night but I was taken off it in the morning.

My nurses had me sitting and standing the afternoon following my surgery, but I struggled. No so much the physical aspect, but my nausea immediately returned when I changed positions. My second night went much better than my first, and I was up and walking my second day in the ICU. I was discharged 2.5 days after my surgery, which from what I understand was pretty quick.

It took me about a week before I felt totally comfortable walking around the house, using stairs, showering on my own, etc. Now approaching my 3rd week post op, I can pretty much perform my daily routine without assistance. I still have a ways to go before feeling normal again, as I am still experiencing episodes of certain symptoms. My surgeon says that is normal though as my brain is still "settling" and also the fact that I'm weaning off a few medications. As a reference, my surgeon was of the opinion that I'm about 2 weeks ahead of schedule. I'm hoping to get back to work the second week of August.

I agree with Selma that everyone's experience will differ and that recovery should not be rushed. You have to listen to your body. The last thing you want is to rush your recovery and hurt yourself in the process. I can attest that it can be difficult to be young and have trouble doing everyday tasks (I'm 24 myself) but it's important to trust the process. It just takes time.

I wish you all the best with your upcoming surgery. Try not to fret. You'll be back on your feet in no time :)

[selmaS]

  Hi and welcome to the Chiari forum.

The answer you get will be different from each person as we experience this condition and the meds and surgery differently.....

For me....I remember I did not want to wake up...I was enjoying the sleep...lol...so many of us do not feel rested after sleeping and have issues with sleep...such was my case....but I do remember my husband coming in recovery...and I gave him a message for my daughter....I said tell her "the calla lilies are in bloom again" and I said say it like this....and I said it like Kathryn Hepburn.....it is a line from my daughter and mine's favorite movie.....so I was aware...and able to remember I wanted to give her this message....I decided about it b4 surgery and did not tell my family about it....I knew when my daughter got it that she would know I was ok.....she was living in NYC at the time attending NYU....and I did not want this to affect her studies...

I was much older at the time of my surgery and I do have other related conditions and issues so how and how long it took me to do things post op can not be compared to what you may have to face.

Just know, it can take up to 2 yrs for the nerves to heal completely...and it can take time to heal and you should take your time and listen to your body.

I was in ICU for 2.5 days and on oxygen....then was in a reg room another 2.5 days....I used a walker for a few weeks....keeping in mind at this point I was using a cane for over 7 yrs...and that I do have other related conditions....but I continue to see benefits with each yr that passes since surgery 6 yrs ago....

Do not rush to get back to life too soon as it can cause set backs....listen to your body.....and just rest, rest and rest some more....then slowly add to your walking...and just increase that for a time....I was also given neck exercises for those with this surgery and I know they helped me as well to help prevent scar tissue and the muscles from getting tight.

Relax and know this is not a race....and you are not alone....

If you would like a Prayer thread posted for your surgery post your date in the surgery date thread.....wishing you all the best.

[Saitutuila]

Hi would you please tell me what kind of insurance you have that covered this surgery. My boyfriend has just been recently diagnosed and we need to know what kind of insurance we need to have..

[selmaS]

Hi and welcome to the Chiari forum.
What insurance really depends on the Dr you decide is best for him.....talk with their billing office...keep in mind there will be others in the OR in addition to the surgeon that will be billing as well.....I am not sure if there is insurance that will cover it completely but most of it can be with a portion being out of pocket. May I ask where you are located?