Need your help!

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,


420-IMG_0186.JPG (100 KB) 421-IMG_0200.JPG (108 KB)


As complete opposite...I had extreme dry eyes and salivary glands...could tell you so much o nthe pain / misery...

Suggest you research "eye lesions" and any other terms that come to mind ... it may help you find ideas to ask your doctor... There are so many cross-sections of the parts in our brain (and/or body) .... Have you seen a neuroophthalmalogist?

somehow if I had extreme dry eyes...and you have too much fluid...there has to be some related reasons....

Are you home or yet in the hospital?

Hugs and prayers...


Oh, Kimberly, I am so sorry you are going through this. Must be horrible!

I have only had the initial angiogram so far, so have nothing to offer. Just wanted to express best wishes to find a solution.


Oh Mrs Unique

This is just crap, was so hoping for better results and answers for you honey. Lets just hope and pray someone out there has an answers,

Thinking of you and sending Best wishes

Gaynor x

well i can undersdtand but as bad as we may feel we are doing well. have you tried your primary? Are you taking any new meds? Are you keeping your head up at night? I just ask myself these things when things occur as they do. I dont have bubbles but on my eye lid in the corner i get pimple things that i swear are screws i could see they come and go as screws MOVE. Have you gone to the eye dr? Im not having a dandy time myself but cheer up we all love eachother ::))))

I am at a loss for You...!

God I don't about contacting Doctors in United States...maybe someone would take on your case...not much help, I know...I wish I can help you Kimberely...

Love and Hugs Colleen

Kimberley...thought of some more words to research......ophthalmology anatomy and/or physiology ...

Last night I could not think/say basic words like anatomy...

Hugs and prayers.



I have done searches for just about everything I can think of. I did see a neuroopthalmalogist the last time this happened after my first surgery. He was really no help and said that the eye itself is ok. I did lose some vision because of all this but not bad at all unless around my eye swells so much that it's shut.

I am home again. After two weeks of being in the hospital and them doing different test, on Thursday I just said I want to go home. So I did. My doctor is going to call me on Friday to see how things are going. Thanks for the hugs, prayers and help!



Thank you Sherri :-)


That is my hope Gaynor :-)



Hey Laurie,

I sleep in an almost sitting up position, have tried with 3 pillows then 2 then one. Dose not seem to make a difference. The weird thing is how it comes and goes at will

I am so sorry to hear that you are not doing well. I hope that things get better very soon for you.



Colleen :-)

I have thought about asking my mom or my sister to have one of their doctors contact me just so that I can ask questions. I just feel like this should not have happened! Your supposed to go in for clipping and go home to recover then be able to start living your life again. Recovery is not supposed to take this much effort nor this long. I know that it does take longer and more effort if you have had a rupture but I didn't. My annie was only found because my mother's neuro said all her kids should be checked. I didn't have headaches or any other symptoms that would leave me to believe I even had a 6,25 annie.



Pat your the greatest!

Thanks for the tips! I will continue to search.




I dont know what else to say that the others haven't yet. I sure was praying that your last scan would give you the answers you were looking for!

Maybe as you say your sisters or your mother could ask their doctors if in fact what you have has ever occurred in their patients. It's hard to believe that no one in this world has gone through this or something similar to what you are going through!!

Am sending lots of hugs and healing thoughts to you.


i reread this and by golly gee i might have a answer, ALLERGIES, it just popped into my head you can try putting some benadryl liquid in that spot or get allergy medicine. wont hurt to try.

Hey Laurie,

I am not allowed to take any meds without the permission of an infection specialist. I received a cocktail of antibiotics after my 3rd surgery and am now allergic to just about everything. I am only allowed right now to take the meds that I have shown no reactions too. Tylenol, my thryoid meds and this one tablet that is supposed to help with pain & swelling. The doctors believe that I am actually allergic now to even more then just antibiotics so unless an infection specialist has tried it on me I am not allowed to take it.

Good idea though :-)

Hello Linda,

I agree with you! I can't be the only one!

I have talked with my mom, sister & daughter all of which are going to try to contact their neuro's to see if there might be a time that I could call and talk with them. Now all I have to do is wait for answers.



Hi friend -

I'm so sorry to hear this, and you are completely justified in your anger. I'm angry for you!

One time I had a reaction to something that all docs were unhelpful about - I went to the medical library at UCLA and did my own searches, which gave me references to medical journal articles. I diagnosed my own problem - I printed out those articles (3 case studies reported by docs around the country of exactly my symptom) and my doctors were shocked, and completely agreed with the case studies being the same situation as mine was (this had nothing to do w brain).

SO - is there a medical hospital library, a university library that would have search engines that could refer you to medical journals? You may find your story replicated in some reported case studies. I agree, you cannot be the only one, but it may be unusual enough that it's not well known yet.

You may even be able to pay to subscribe to a search engine that would refer you to medical databases. Google won't be enough. And if you can't in Sweden, maybe one of your family members in the states can get to a university or medical library and do computer searches. I didn't need any affiliation at UCLA to go in and do the searches - so I'm sure your family could find a place to do this type of search if you cannot.

The other thing I would do is see about getting a couple US big-wigs to review your case. My brother lives overseas, and once when he had some complicated medical things going on, he sent me all his records and I took it for a second opinion here, which was very very helpful. So that's another route - if you're paying for the consult w a US doctor, I imagine you wouldn't have a problem finding a top-notch doc here to look at your records.

That's what I'd do ==== go into super pro-active mode, which I know you are also good at.

I agree = time to take this bull by the horns, pull out the stops, and get to the bottom of this.

If you give me key words, and I can get to UCLA, I don't mind trying to hunt around a bit. You deserve to be done with all this - and I still trust that you eventually will be - but it's just flat out crazy making at this point, right?!!??!!

You are in my thoughts.


I had another thought. Would your doctor be willing to contact a doctor in the US via email, etc to see if they have any suggestions? I am a newbie and know that even if I had a long-term relationship with my neuro-surgeon, doctors often take more time to help a fellow dr. with a problem than they would if it was coming from a patient.

Hi Kimberley,

I have not had this problem, but, I pray that you and your doctors find a solution to this. Don't give up!

God Bless,