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08-05-2010, 02:20 AM
#141
Thanks so much Jan! I will ask her that at my next visit in September.
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08-05-2010, 04:53 AM
#142
Brooke -- also, this is particular to you and me and others who have had the saddle nose repair (I have not, yet). When Dr. Lebovics spoke he did say that relapse of the disease can ruin the repair and that there was nothing that could be done at the current time to stop a saddle nose from recurring in an active patient (which may be why he at least waits until you are 6 months chemo-free). I was not aware of this -- he has had patients collaspe again and has fixed them again. Obvviously, for many of us the deformity is so severe that we feel almost as though we have no choice in doing the fix, even if it may not hold.
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09-16-2010, 03:41 PM
#143
Here is a wierd one:
On Sept. 4 I had severe face pain like it was sinus pain. When the home care nurse came it that morning she could see that I was in horrible pain and so she called my doc on his cell phone. I talked to him and he said to try Tylenol 1s. I popped 3 that afternoon around 2pm and the pain subsided quite a bit but came back a bit more around 7 pm so I popped one more. The wierd thing is that around 4 or 5 pm the left side of my face went numb around my eye, nose, and lips. My upper left teeth and gums are even numb.
I talked about this with the ENT last Thursday and he said it is most likely sinus pressure in the left maxillary pressing against a nerve to cause this. I also mentioned this to my Wegs doc last Friday and he basically said the same thing.
I am wondering if anyone else has ever experienced anything like this whether you have had sinus or nose involvement or not. This is the first time I have had this feeling.
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09-16-2010, 06:41 PM
#144
By no means the same thing, but I can confirm that sinus involvement comes with a lot of pain in the face and behind the eyes. Also, since sinus surgery, my top teeth have been numb due to the nerve damage. It is not something I notice any more, but felt odd at the time.
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09-16-2010, 09:13 PM
#145
Phil, I had mostly left facial pain and tingling on my left cheek and up top of left hair line. I did have severe facial pain right before being diagnosed and that is what drove me to the doctors and demanded what is going on with me. That day I was diagnosed with WG.
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