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Chiari Malformation Community
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5508557 tn?1373479045

Facial swelling when I awake: Is this related to CM1?

Back story: I had Craniotomy 02/2012 to remove meningioma from sphenoid sinus area, compressing my right optic nerve.  After surgery, for about 5-6 months, I would awaken with my right eye area being so swollen that it looked like I had a golf ball under the skin.  I was told this was CSF pooling which was common post-op and it would eventually cease (up to a year!?). Was told to sleep in an upright position to allow CSF not pool just in the facial/head area.

More recently I have been waking up with a dried fluid around my nose that must have leaked while I slept.  I also have swelling all over my face, especially on the right side and my lips are swollen like during an allergic reaction. As I go through my day the swelling goes down and my face returns to its normal shape/size.

In your opinion, could this be related to CM1? I've asked my NS (who is NOT a Chiari specialist) that did the craniotomy, and was told that it was probably allergies.  I have trouble with this explanation because that would mean I have an allergic reaction to something that I only come in contact with in my bed!

I'm waiting now to hear back from The Chiari Institute regarding setting an appointment, having sent in MRI cd's and information forms for both myself and my DD (17 yrs old) w/in the last 2 weeks. Hopefully we can get some more testing done for related conditions and find out what treatment plan will be best for each of us.

swollen and confused,

Lori
3 Responses
620923 tn?1452915648
COMMUNITY LEADER

This sounds more like a CSF leak that has not sealed...did ur original surgeon try a blood patch or other means to check the leak?

Some will seal on their own, but it is obvious that is not the case with u.....I would deff look into seeing if a blood patch may help seal this leak to see what else remains after that is resolved.
5508557 tn?1373479045
the original surgeon didn't try anything because he thought it was normal for the CSF to leak for a time after surgery, and then when I called regarding it going on for an extended time he denied that it could be related and said it's probably allergies. how does a blood patch work? what does it entail?
620923 tn?1452915648
COMMUNITY LEADER

  A blood patch is ur blood injected to the area of the suspected leak...it should help seal the leak.....if this does not work, they may choose surgery as an option to seal the leak.

A CINE MRI or a LP maybe done to see if u have a leak......
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