Craniotomy?

So Sadie is scheduled for her craniotomy on Jan. 23rd at Hopkins to remove the AVM in right temporal lobe. I AM TERRIFIED!! I am very afraid of the titanium also being left in her brain (clips) and skull (screws to hold bone flap in place). PLEASE give me any advice you can about good and bad experiences~ post op and years later. Thanks so much!

Hi Tawnya. I had my craniotomy done 23 plus years ago and I have 2 clips in my head. I have had a very full and complete life! Every recovery is different but most outcomes are positive. Please keep us posted!

Thank you so much!! She's only 10 and I am terrified of making the wrong "choice" for her. Thanks for sharing a positive story!! Take care!

Thank you so much for another positive reply! I feel blessed that we are near Hopkins as well! Take care and thanks again!

be positive its the lucky '23rd' ....i had mine on the 23rd of February this year & so far so good....God bless and everything will be just fine......remember the lucky 23rd!

Congratulations!! I will continue to think lucky even if we have to change days :) Sadie gave me a paper tonight saying the school talent show is the 27th of Jan and she is begging to perform in it. She doesn't know her surgery date yet, so I will have to talk to Dad when he comes home about this one. Take care!!!

HI!
I had my craniotomy done on 04/09 little bet of slight headaches besides that everything is going well for me. Have faith my friend Everything is going to be okay!!!

My 10 year old son had a craniotomy on October 28, 2011 at childrens memorial in chicago, his AVM was on his left tempural lobe. He has one titanium clip and 4 "screws". He has recovered amazingly. We felt the same way you do, are we making the right choice. However I feel like we have made the best decision. He is AVM free we were home from the hospital 4 days post craniotomy. He was back at school for half days within 9 days and full days the following week. He is doing wonderful. I know each sitution is different but we have had nothing but a positive experience with a craniotomy and we are so happy he is AVM free. Best wishes to Sadie, please keep me posted!

Keep the Faith, Tawnya....Sadie is going to the BEST hospital. Sadie will be in my thoughts and prayers! Keep us informed on her progress!

hey i just had a craniotomy for removal of AVM on the Right temporal lobe.... i know how it feels to be scared. Thankfully, my surgery went very well.. and so here i am now. i have yet to share my experience and story - as i have only just begun my road to recovery.. but here's what i can do for you. i will be praying for Sadie. And just to let u know - i do have titanium clips that are MR compatible.. no screws... will share more later ok.... good luck.. and know that Sadie, will be in my prayers :)

Thank you so much!!! Hope you are well :slight_smile:

WOW!!! That’s amazing! I hope he continues to do great! Thank you!

Thank you! Prayers are the best we can all give her! :slight_smile:

I will be praying for you too!! Thank you. I wonder why some don’t use screws to hold bone flap in place? I wish she didn’t have to have them either. Speedy recovery!!! Take care :slight_smile:

Hi there! I am glad you have found a course of action for your daughter. It is scarey though, I know. Our family will lift her up as well. I think the unknown is the hardest part. Berkeley and I will be in Baltimore next week for here year visit after the radiation treatment. At six months the AVM had begun to shrink so I am anticipating that to continue. We will be coming from 70 degrees North Florida! Who is the doctor that will be performing the crainiotomy? Did you ask him why the use of titanium? There are so many different ideas, etc. I am sure he or she can tell you why they choose this route. Ask all the questions you want. We have been pleased with the enire pediatric neuro team there. With the distance we live I thought it would be hard, but they have worked wonderfully with her doctors here. Keep us up to date. I hope you and your family can enjoy the upcoming Christmas season...God bless.

Melissa Peterson

Hi Tawnya. I had a crani about 3 1/2 years ago a couple of weeks after my bleed. I've got screws and a plate but they don't bother me too much. I do feel a strange tingling and the area itches when the weather's bad. Sounds crazy, but it's true. By the way, I'm also originally from Maryland and my mother has been treated at Hopkins for years for cancer. They are fantastic there! I wish you and your daughter the very best of luck. You'll be in my thoughts. She's lovely!!

I just had my AVM removed in March of this yr. in the same spot. I don't have any issues with the plates or the screws at this time i dont even know they are there and neither should sadie actually. The surgery was good they got it all :)! The only issues I have now and some I had before the surgery are my continuation of my headache and migranes they never went away they are actually worse now. But that is just for me. Like I said i already had those issues. As for after the surgery The only issues i have now is that i have nerve damage and have alot of pain issies as a result of that and have to see a pain specialist to help keep the pain under control. But that is different for everybody !!! I have talked to many, many others who have had the same surgry and have no issues what so ever! I did how ever loose the ability to move my eyebrows for a couple of weeks after the surgery but that came back, and i was told that would happen. As for pain right after the surgry there really wasn't much except for the 1st couple of days! I hope all goes well for Sadie, and remember everyones experience is different. There is nothig to be afraid of. Tonna

Dear Tawnya, I knoe how terrifying it is. My son did two craniotomies and both succesfull. The same will happen to your beautiful daughter. Be positive and have faith. Everything wil be fine. Lots of love.

Tawnya, although I can never address the outcome of a surgery (I wish I could), I am a big believer in positive visualization. This is probably the best thing for both yourself and Sadie. There is a group on here that you may wish to join to read called Success Stories at http://www.avmsurvivors.org/group/s to get you in the mood for this. Hope this helps and best of luck to the both of you with this upcoming surgery. Make sure to keep us all posted!

Hi,
I am assuming you are coming to Hopkins? Who do you see?