I received a phone call from the hospital today. I have an appointment on Monday to see a nerve specialist. Seems my eye specialist has sent a letter to this nerve specialist to see if they would check out if there is a problem with the nerves in my face. I also should be having another MRI next week, my neuro wants that one done.
I am very nervous about all this and am praying they can find the problem and fix it without opening my head again. The thought of that happening has me so nervous. It's hard not to think about it, but I am trying. When the call came yesterday about seeing this nerve specialist the nurse on the phone said something about a possible leak somewhere. My question was how can that be since my annie was clipped. I didn't get an answer!!
I'll just have to wait until these tests are done and results are in...sigh!
I have added two pictures of what I looked like this morning Jan. 20,2011.
If there is anyone that has this problem so long after surgery (9 weeks) please let me know.
Search on the 'net from facial nerves to cranial nerves...to help you in what you may want to ask your mds and to better understand their explanations. The various sites have images depicting the location s of them in our brain.
Please feel blessed that you have a group of mds who are addressing potential issues...I am delighted for you that anything is being addressed early.
Did you elect to see an eye specialist, or were you referred to an eye specialist?
No I didn't elect to see an eye specialist, I was sent to them through my neuro. He was baffled as to why so many weeks after surgery I was still swelling..Today is 9 weeks and one day since surgery and I woke up again this morning looking like I had been in a fight...I'm feeling so depressed about it. I won't go out of the house or let anyone but my husband see me when I look like this. The strange thing is it goes down after several hours and seems to only happen when I sleep. I have tried everything from sleeping in a sitting up position to laying on one pillow..This problem makes it so hard to read because all you see is skin until the swelling & liquid filled bubbles go down..I hate going to sleep!
sorry to see your having so much trouble,,are you able to sleep in a recliner instead of being horizontal? and also i would demand they give me an answer about the leak issue,,wth,,that would freak me out which im sure is doing to you,,thats crazy they tell you this and then dont elaborate..i will keep you in my prayers for quick answers and resolution to your issues..many prayers coming your way michelle-n-texas
I do freak out some days like today but sadly I am getting used to this. I have tried sleeping in a recliner I have tried sleeping with one pillow all the way up to 5 of them..lol..My neuro said that they have never seen this before. His words were we have done thousands of this sort of operation and have never seen this so they do not know why it is happening but are trying to find out..
Not that you need to run to another doctor - but I wonder if a dermatologist might be able to prescribe a topical cream which would reduce swelling. (I know some people use Prep H for under eye bags....but I don't think I'd try that!) Somehow gravity must be involved, and even tho they haven't yet found the cause, maybe a dermatologist could help w/ a bit of something to reduce swelling. Just a thought.....
Have a good night/day (guess we're not onthe same time frame!)
Jennifer
(ps - my grandfather's family came from Delarna in Sweden!)
So glad, so pleased, your neuro made this referral for you...I get such a warm, pleasant feeling when I hear / read/ know, that...not leaving your symptoms as incidental... Please let him /her know of the compliment from across the country...
Wishing you a wonderful weekend...and the best results from your appointment...
Kim:
I looked at your pictures. I did have swelling but not the same as your pictures. I would wake up and the entire left side of my face (surgery side) was swollen. This happened for a long time, months after my surgery. I would swell then it would resolve. Just when I thought I was okay, I would wake up swollen again. They told me it was okay. Apparently it was okay because I was three years out in May. I do not know why.
I did have a post operative bleed. My ACOM (Anterior Communicating Artery Aneurysm) was coiled in 08/06, clipped in 05/07 and in 06/07 I was readmitted with a bleed. I know that a coiled aneurysm remains as is and then they clip it. I know that when they clip an untreated aneurysm they pop it (not the correct terminology) but you know what I am trying to say. So I bled from where?
Just trying to give you a little information. This is as much as I know. I hope everything works out for you. I will add you to the prayer list in our group. Take care.
You said that you looked at my pictures and that you also had swelling but not like mine? Could you explain a bit more on it? I have not been to the point where I think I am ok because I wake up every morning looking like that. I did have an MRI with contrast on Friday. Monday I meet with a neuro but she does not do surgery (so I am told) she is someone that specializes in the nerves, my eye specialist wants her to check out the nerves in my face. I am however going to try and get a hold of my neuro surgeon on Monday because of the behavior of the staff when I had my MRI on Friday. The norm is you should have the results in 7-10 days but they told me that my doctor will have them with in the half hour. Their behavior left me thinking that they might have seen something that might be able to explain my swelling problems.
What I meant is that your swelling seems to be around and beneath the eye area. My swelling was the entire left side of my face. My cheeks were puffed out, my eyebrows were uneven, my eyes were not as pronounced as yours but you could look at me or I could look in the mirror and notice it immediately. The left side and the right side did not match. When I woke up in the morning it was severe then as the day went on I would say it was moderate. What I am trying to say is that it was definitely worse in the morning upon wakening. I hope this helps. Ask me anything you want. I will try to answer. Take care.
hope you get all this straightened out…will keep u in my prayers for a quick resolve and a steadfast recovery to infinite sound mind n sound body…many prayers coming your way…michelle-n-texas
My wife is 2yrs out and she has had to have a number of things checked out, a few of which they weren’t sure how to deal with. But because of their tenacity and dedication, they always seem to help her. I learned that u have to bem your own advocate and not let a doctor get off with a short answer. I have always let them know I will not settle gor anything less than a complete explanation that I can understand. God Bless
