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Chiari Malformation Community
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Avatar universal

Neck and head pain when looking up at the sky

Hello,

I had my decompression surgery on Aug 10, 2016 at Stanford Hospital. Surgery went well. During recovery at home I started leaking spinal fluid from my incision. Went back to the hospital where they put a lumbar drain. After a few days the NS informed me that they need to go back in and find the leak. I'm fine now feel great. Now, I notice when I was working.

When I look up at the sky. I feel a lot of pressure on the back of my neck and I get a instant headache right on my forehead and I feel dizzy. So the question is. Is my chiari coming back? Or is this "normal"?

Thank you y'all
7 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Welcome to the Chiari forum.

When was the surgery to correct the CSF leak? That is when you need to time your recovery from not the original date.....and it will take time to be able to look up like that.....I am further along and don't typically look up just out of the symptoms I would get doing it...we learn as we go what we can and can not do....

So for now I would say this is normal.....

May I ask what do you do at work and how long are you back to work?
Avatar universal
Hello Selma,

My leak was corrected on Aug 24. I work as a fire system inspector. I climb ledders a lot, looking up a lot, and body is always in weird positions.

I was discharge out of Stanford on September 1 and went back to work on November 22. My NS would not extend my disability so I had no choice to go back to work.

I just don't want to have another decompression surgery again. I know I have read that the surgery takes 2-3 hours, mine took 9 hours. I'm also a male with sleep apnea, restless leg syndrome, and weigh 300ibs.

Thank you
620923 tn?1452915648
COMMUNITY LEADER

  Do you know what type of apnea you have...obstructive or central?

The type of work you are doing is definitely affecting your recovery.....it can cause it to go slower....and also trigger symptoms to flare.

I know you had to go back to work but can you get other duties until you heal a bit more?
Avatar universal
If I remember correctly I believe it was obstructed. Unfortunately, there isn't light duties for work. I just started this new job and it pays really well. My wife is a stay at home mother and I have two little girls. So, I pretty much don't have a choice and have to work.

I have a 3 month follow up appointment with NS on Thursday and hopefully it will be a positive day.
620923 tn?1452915648
COMMUNITY LEADER

  If it is obstructive you may want to ask your Dr about other methods to help reduce the need for the C-Pap...

Good luck Thursday and do let us know what you find out.
19653550 tn?1481782810
Do you know if you have a psuedomeningocele? Also, were you ever tested for vertebral basilar insufficiency? Both could cause this symptom. I speak from experience as I have both
Avatar universal
Hello,
So explain the issue with my NS yesterday and he seem that there is no issue. He stated that it's still healing and give it time. I explained that this just started happening about a week ago or so but, he still just said give it time.

I do have a C-PAP machine I just always forget to use bc it's so uncomfortable. I should probably start using it again.

I looked up insufficiency and pseudomeningocele and pseudomeningocele is probably more accurate. I wish I would have checked this forum before I went to the appointment so I could had ask the NS.

But we will see what happens I guess
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