Yesterday was 8 weeks since my crainotomy and I am still getting up every morning with swelling. Around the outside of my eye both under and over it's like liquid filled blisters or bubbles. I have been to the eye doctor again and showed him pictures of what I looked like when I woke up that morning. He has no idea why this is happening. The bubbles/blisters go down after 4-6 hours which then I look better. I would really like to know if this has happened to anyone else. So PLEASE, PLEASE if this has happened to you then could you tell me of your experience.
I have been waiting for a call from my neuro for the last few days now. I called his office when I returned home from the eye doctor. The eye doctor wants to send me to another neuro closer to where I live and I don't want that I want the same neuro that was in my head in the first place.
The drooping eyelid I understand but the swelling 8 weeks after, that look liquid filled I don't!
Thank you in advance
Sorry Kimberley, I didnt have that. I did have swelling around my right eye. But after a few weeks it went away. Keep us posted.
I had my craniotomy 1 month ago today & I still get swelling & yes, I get what looks like liquid filled bags under my eyes...my top eyelids are more or less just swelled up. Just yesterday I noticed that the right side of my head near the temple area has caved in...I'm going to ask the dr. for a suction cup device to pull the dent out, think it will work, lol!!! I go back to my neurosurgeon this coming Monday...will see what he says about it & let you know! I think it's all part of the healing process! Stop & think about it, we had "open brain surgery"!
If the neuro’s are unsure of what this might be-tou may suggest that they take a culture of the bubble like blisters, because if it bothers you that much it must be something-and if you are comfortable with your neurologist as it sounds I would not change doctors. Because truly good doctors that listen are hard to come by. I will say a prayer for you and please let us know how this goes.
Thanks for the advise everyone. I talked with my neuro yesterday. He said the reason that it took him so long to get back with me is because he could not believe the pictures that I sent to him of what I looked like when I woke up on Monday morning. He is not sure what is going on but does say it is not normal. He said that he has talked to others about this and has shown them the pics of my face in the mornings and no one has a clue what it might be so they are sending me for an MRI to see if it shows something. He said to have this happening 8 weeks after surgery is uncommon but the bad news is that he also said that I need to understand that they might have to open my head again. I am keeping the faith that this can be fixed or whatever without re-opening my head!
Now it's just sit and wait for the MRI then the results..
Thanks friends, right now I need people that understand!!!
A suction cup just might do the trick..lol...The part of my forehead that was caved in is no longer that way. It's just the swelling around the eye that is the biggest problem I have. Ummm if you have success with the suction cup please let me know..lol
I am not going to change doctors. I like the one that I have. It's the eye doctor that wanted to send me to someone else and I said no I want my own doctor. My doctor is the one that sent me to the eye doctor in the first place so my neuro said that if the eye doctor could not find anything wrong with the eye then it is their job to send me back to him. He said he will be talking with the eye doctor himself.
Thanks for the prayers Lisa! :)
No I did not have a rupture. My annie was found because all of my mother's children needed to be checked after she was found to have 2 in her head and one in her stomach. We are 5 kids and so far 3 have been checked and 2 of us have been found to also have annie's. My sister has one less then 2mm's and her neuro says that they believe that they will never have to do anything about it but they are going to watch it. My mother is in the same position with her largest being 3mm's. She too is being watched. I just happen to be the lucky one with a 6.25mm annie. Like you I have noticed that the more tired I get the drooper my eyelid is and the more swollen I look. These things I know are normal but going to bed looking one way and getting up then looking like Quasimodo is not something I was told would be happening...lol
Thanks for the support...:)))
Im also glad that they are going to do something. Im sure everyone will be saying their prayers that they will not have to go back in.
keeping you in my prayers…yall have me cracking up over the suction cup comments…laughter is great medicine,and i hop your able to get things straightened out very soon…sounds like you have great drs who sincerely care about your well being…your gonna be great,God bless and many hugs coming your way
Hi Kimberly -
I'm so glad that you trusted your internal wisdom that told you that this is NOT normal. Good for you for being proactive, taking that picture, and getting it seen, and following up w the doctor you wanted (your surgeon). It's a lesson in being okay w/ needing to be a squeaky wheel sometimes. I hope to God that you do not have to have more surgery, and that prospect must be scary, but thank God you used your intuition and your voice and have been seen and heard and will be taken care of. I'm truly inspired by your perserverence with this - you KNEW it wasn't right, and you were right.
I'll be sending best thoughts and hopes that this is easily remedied.
Gotcha in my Thoughts and Prayers....!
That the Docs get to the bottom of this situation with the MRI and donot have to go back in your brain...God Bless Kimberley...Know that someone is sending "big healing thoughts" your way...Cyber~Hugs Colleen
I agree with all that have written. After my rupture surgery and craino The swelling came and went for almost a year. I since surgery dont really produce tears (dry eyes). I go into these swelling stages around my tear ducts and they are itchy. Then I go through a draining stage all this lasts about 3-4 days once they drain all seems fine until it happens again. The eye doctors think things are coming back on line for me.The M.D. say it shouldnt be happening and the neuro thinks time will heal all…Me personaly I had my brain disturbed by my neuros hands and a clip and artificial material put in me. I think my body is doing the best it can to heal itself and the drs really dont know . I do know for sure that regular tea bags soaked and squeezed placed over the eyeys really helps with the swelling we did this in the hospital and I still continue to do it as needed. I prefer natural if I can. See what your drs say and maybe do a little research on naturals, herbs,nutrional healing. Remeber that we are on a marathon with recovery not a sprint…You are doing great keep up the good work Positive thoughts and prayers your way. Thank you for sharing…Enis I,ll do some reasearch on my end when i am able to read usually early A.M.