Skull Bone Removal- HELP!

Hi Friends,

It's been awhile since I have been on line here, as you all know I had a 2nd operation on February 17th to fix a problem with swelling that I have had since my crainotomy November 17th...After my 2nd operation I was feeling great and looking the best that I had for the last 3 months that is until Tuesday of this week. I woke up with the temple of my head so swollen and very painful. Around noon Tuesday I had such bad pain coming from the temple of my head and it just kept getting bigger and bigger. I called the emergency since all the doctors offices were closed due to lunch, the emergency said that I needed to come and be looked at. I walked into emergency only to hear the doctor say "Oh WOW" after he took one look at me. The emergency room doctors called my specialist who said that he wanted a CT scan done. Once the CT scan was done I was told that an anbulance would be coming to pick me up and take me to the hospital where my specialist is at and that the scan showed more fluid in my head.

I arrived at the hospital where my specialist was waiting to give me the bad new..He said that they are going to have to open my head for the 3rd time that he believed that I had an infection and if this is the case that they he would have to remove part of my skull bone which means that in about 6 months he would have to operate for a 4th time to put a special bone back on my skull. It turned out to be an infection and now half my forehead is caving in because there is no skull bone there. I am devastated and so very upset. The day before all this started I woke up feeling so great and even went out and did some visiting. Why did this happen to me? Is there anyone else here that has gone through the same thing? How does one live without part of a skull bone? Any information and or experiences would be sooooo greatly appreciated!!

Oh Kimberley - I am just so so sorry to hear that you're having to go through even more. I wish I had words that would comfort, but the best I can do is to say that I'm so sorry, and that you are in my thoughts and prayers. You are certainly a survivor, and I know you will continue to be, but I'm also sure that this just feels like too much.

It isn't fair, and you have every right to be devastated and upset.

You WILL move past all of this, but it must feel like a long road.

I'm so so sorry.

I hope that the puppies are giving you moments of joy!

With you in thought,



I am so upset for You...I don't even know what to say...Oh God...I don't know what to say...

When r they taking you back into operate...and have they gotten the infection under control...

I hurt for You...! Gotcha so close in my prayers...Hugs Colleen

Kimberley, I am so sorry to hear about the situation. Hang on there and keep the positive thoughts and good faith. My prayers and thoughts go out to you. May miracles happen and the doctor's hand be guided and gifted to give you a full recovery. Hugs...

Kimberly : I am praying to God for him to help you & your family through this terrible setback! You seem to be a strong positive cheerful person & I believe ALL of us in our B.A. family are rallying & praying for you. Think good, peaceful thoughts & believe in the gifts from up above & your doctors’ skills. Giant hugs to you! Love, Judi

Kimberly we are all praying for you and that comfort will surround you in your time of need.

Oh Kimberly…I am so sorry this has happened. I really feel for you. Did they say why you got or how you got infection? I am at a loss for words right now. I will have you in my prayers. You are a survivor and you will get through this.


My heart and prayers wrap around you. I am so sorry for all you are going through.

A sister of a friend of mine had a part of her skull removed and maintained for replacement...and, in the interim, she had some device (a plastic or whatever I do not know) placed to protect. I am so sorry I cannot be more specific...even on the area of her skull. Can you ask your neuro about anything for the interim...even tho that would mean another surgery? Please also ask your specialist about any limits on your activities to help protect everything...

You are in my prayers...


Hi Jennifer,

The puppies are doing great! I am missing alot of the best time with them but I take comfort in knowing that they are in good hands and growing like they should!

Thanks for the prayers sweetie!! :)

Hi Colleen,

I am not sure when the 4th operation will be. My doctor says it will take 3-6 months. They have to make sure that there is no signs of infection. Right now I am on massive doses of antibiotics and will be for several months. I was so shocked to find all this out and I guess I still am in some ways but I am dealing with it..I have no other choice..

Keep praying please...


Hi Meleah,

My doctor said that he thinks the infection is from the second surgery I had. They did say that it was one of the main concerns that they had before that surgery was done. I got it and now I just have to deal with it and I will!!!!


Hey Pat,

This is intresting!...I wonder just how often this happenes. I thank God that in todays day and age they can do something about this. My doctor took the bone from almost the middle of my forehead down to the end of the eyebrow, so that entire section mainly the temple no longer has a skull bone for protection. He told me that we are going to sit down before I am released and talk about all the do's and dont's. He did say that he didn't want me standing near anyone holding a to keep the humor.. :)..I would be intrested in hearing more about your sister's friend though.


Thanks everyone for the thoughts and prayers. You have no clue how much I feel they are needed when I read them...Love to you all


Kimberley...I will try to reach my friend...she has a busy schedule w/her involvement in our retirement organization... and, I do not know how much detail she knows.

There's some odd ironies in the lack of awareness of BAs that Avis and Michelle are so involved in advancing...

Just told you of one friend...

While I was in the hospital, a daughter of some friends was in another hospital; however, hers went back into place...shrunk (?) ...she had no treatment and has had no mroe issues...she reduced her extensive exercise...

Last year, I went to a reunion; and the niece of one the organizers had aneurysm treatment...

In 2007 I saw a bunch of old classmates; months later, one called me for a friend in AZ who had a rupture! I gave her family as much info as I had, referral data, ...told them of genetics, etc..

Ironically, I met her later...and, her next-door neighbor also has an aneurysm...

How do we get more awareness? Seven + years ago...there was virtually no info...

Hopefully the BAF site will expand their info to include potentials of skull removal...and options, etc...

Hugs and prayers to you...


BIG SMILES & hugs to you across the ocean Kimberly! Have a good day. :slight_smile: Judi

Hi again Kimberley -

I just read, a couple days ago, an update about Congresswoman Gabrielle Giffords, who was shot through the brain - and it said that she has part of her skull removed and it will be re-placed at a later date. I imagine it's one of those things that shocks the heck out of us lay people to hear, but that in the specialized world of neurosurgery, it's not that uncommon, and they really know what they're doing and do it well. She's doing PT, sounds like making an amazing recovery, and that's without part of her skull bone (prob more removed than you), and they're very optimisitc about can and will get through this. It's just got to be yet another shocker to get used to. I'm sure that the more you learn, and hopefully find stories similar to yours, the more ease you will find.

And yes, staying away from people w bats is good advice :)

Hi Jennifer,

It is more common than we realize. The only restrictions that have been put on me are as of right now I am still in the hospital until the infection specialist know what strain of infection it is and exactly the best couse of treatment for it. Until we have those answers I am receiving antibiotics through IV several times a day to cover most infections. once I go home my doctor would like me not to drive for a month because of the seizure factor other than that the most important thing is I need to be careful and never forget that I am without a skull bone. The area that was removed goes from the middle of my forehead to about the ear in length and from the hair line to my eyebrow wide. The doctor wants me to use common sense and said if I do that than I should be safe. I trust him so that is exactly what I am going to do. He did make me laugh when he said that when you look at all this in my case as a whole I have had the worst luck and abnormal luck at that..LOL..He told me today that my next surgery to replace the skull bone will be in August. Since this is my forehead which is part of my face he said that I might want to go out and buy lots of cool looking hats and scarfs and not stay locked in the house because of how it

Oh and I plan on staying away from anyone with a baseball bat in hand.. :)


They had me wear a helmet when I was anywhere but in my house until they replaced the bone flap.


Kimberly - Hats are so IN Vogue now–be proud & stylish. You have a great outlook…continue that! Godspeed on your discharge com hospital soon & back home your family & puppies! Best wishes, Judi