I need to see if I can get some information!
As most of you know my problems have been a little different then most. I have had 4 surgery's after the 1st one I had a problem with around my eye collecting fluid. I would wake up in the morning with liquid filled bubbles under my eye as well as swelling over it. Above my eyelid would hang done but after several hours of being awake it would all go down and I looked almost like me again. However the next morning this would start all over again. I had a CT scan which showed fluid so my doctor was forced to open me up again to tighten everything. This cured the problem with my eye but then 3 weeks later I got an infection which led to my 3rd surgery to remove my skull bone. During the time I had no skull bone I did not have any problems at all with fluid. 6 weeks ago (August 11th) I had my 4th surgery to replace my skull bone. When I woke up I had no big blue eye and I looked great! 3 days after surgery I woke up with liquid filled bubbles under my eye, this went away after about a week. Now the intresting part! About 3 weeks after surgery I started waking up again with swelling above my eyelid, around my entire eye and more bubbles. I had an appointment with my doctor for a re-check on Sept. 13th. When he came to get me in the waiting room he took one look and placed me back in the hospital. My eye was so swollen I could barley see out of it. This happens daily now. I work hard using my forehead musles to hold up my eye the best I can but I have days when it's impossible. After spending another almost 2 weeks in the hospital, having a CT scan, a MRI, seeing several Neuro surgeons plus a plastic surgeon, I have been told that the CT scan was normal, showed no sign of infection or fluid. Hmm, the MRI on the other had showed fluid around the operation area. They have no idea where it is coming from! The fluid I was told is a small amount and that at this time there really is no other test that would reveal anything more.
My doctor told me on Thursday that he can not justify opening my head again to check this out since I have become allergic to most antibiotics since my 3rd surgery. He is concerned that if he does open my head I will forsure get an infection inwhich he would again have to remove my skull bone. They do not know where this is coming from, he can not tell me that this is not CSF fluid, he can not tell me that this is not a slow growing infection. All he can tell me is right now my daily quality of life can suck! Time is what we are working with now. He does not know if this is going to get worse or better with time. He can not tell me that in 3 months it won't come out as a full blown infection.
Thursday was the first time since this all began more then a year ago that I got angry. I can't describe how it feels to look in the mirror and not see yourself. I feel that I have paid my dues and done all these surgery's only to end up not feeling like I am me at times. I feel the worst thing that could have happened was waking up this last time and looking so great, it makes this even harder since I felt so good about myself for the first time in a long time.
My doctor said that they have never seen this before. Not one of the several neuro surgeon's had seen this before. Fluid is not uncommon after surgery, swelling is normal but within a few weeks everything should be if not back to normal or close to it. My days are different. I can wake up all swollen after sleeping in an almost sitting position or I can wake up looking pretty good and within hours being so swollen that my eye is shut and I can't open it. I told my doctor I can't be the only one that this has happened too!! I can't be the only one in the world that has this problem. My doctor said to me that he knows that I want him to operate on me again. His comment angered me so much!!! I said to him what in Gods name makes you say that let alone think that? His reply was that we had talked about all this and I had said I want him to fix this! I told him "Hell yes I want this fixed"!! I want the all mighty magic pill!! I don't want my head opened again!!!!... I have been through enough and I just feel that after all this I want to be ME!! I want to look like myself again. I have waited along time for that and it's not wrong for me to want that. He is worried that I will let this take over my life and become depressed. I don't have time nor do I want depression!!! My life it hard enough without letting depression making it even harder.
What I need is to know if there is someone, anyone out there that has had this problem? Is there anyone that has had even close to this problem? If so was there a fix for it? I can't be the only one!!!
I am attaching two pics, one that shows what can happen with swelling and one that shows bubbles, Please look at them. If anyone has this same look, Please let me know. I need to know I am not the only one!
All my love,
Kimberley
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