Craniotomy Anxiety

I experienced SAH in June 2010 and had a craniotomy to clip three of the four aneurysms I have. My recovery went well after a 19-day stay in the hospital. I rested the rest of the summer and came back to work in August (I teach middle school).

I had an angiogram two weeks ago so the surgeon could look at the one that is on the other side of my head. One picture showed 2 mm, but the surgeon believes it is probably 3 mm. I opted to have another craniotomy to clip that one too. I don’t want this looming over my head and causing me anxiety.

Now that it has been scheduled, I feel a different kind of anxiety now. What if my recovery doesn’t go as well as the first time? With two young daughters, ages 6 and 8, I am concerned about something happening that changes me (my speech, ability to work, etc.). The first time was an emergency-there wasn’t time to think. I don’t think I was ever out of a twilight state from the moment they told me that I had four aneurysms. There certainly wasn’t time to worry.

I don’t ever want to be a burden, so I haven’t really shared my feelings with my husband or other family members. I don’t want them to worry so I’m trying to be strong. Maybe if other people who chose to treat an unruptured aneurysm could share their stories I will be less anxious about my future. I know that I can’t let fear take over my life. But I am on the verge of tears right now as I think about the prospect of not watching my children grow up with my husband.

I am very confused today,

Dear Jada,
I want to reach out to you although our situations are different. I had a ruptured aneurysm about three years ago and, thankfully, lived to tell about it. I have never faced the situation of having an unruptured aneurysm and having to make a decision to have it fixed. My only thought to you is that I would rather have it fixed than have to think of it every day. I still have many limitations from the rupture. Even though I don’t have small children, my adult children and my beloved husband, Jim, went through hell worrying about me. I was in la-la land while I was in the hospital for six weeks. I didn’t realize how much I frightened them until I was home for quite a while.
Please just trust your surgeon. He or she will take excellent care of you. I know that the doctors who treat this kind of problem are extremely skilled and dedicated to their profession. I have every bit of admiration for the wonderful man who saved my life–the other doctors in the ER did not know what was wrong with me, he did. He was not only wonderful to me, he was very compassionate and understanding to my family. What a combination.
Hope this has helped you in some way. I will be thinking of you in the coming days. Please get back on and tell all of us how you are doing. God bless.

Hi Jada, you are such a BRAVE woman, and certainly an inspiration to me. I am a single mother with a 15-year old son. I have a complex aneurysm which I found out about in Feb. this year, which hasn’t been treated yet because of all the risks. I lost sight in my right eye after it leaked into my retina, and the risk is too great of me going blind in my left eye also with surgery. Just yesterday, 3 Neurosurgeons advised that they perform a brain bypass craniotomy on my annie, which has 3 lobes and is entirely around my left internal carotid artery. Your recovery story offers me HOPE as I decide on this major surgery. My annie is 8.3 mm. The first leak, I was very fortunate that it wasn’t a major brain bleed. But the risk of the 2nd one being major has increased.

My aunt went through a brain bleed and 2 surgeries within a short period of time last year. She passed away a year ago to this day on Oct. 22, 2009, God rest her soul. My mom and I agree that the surgeries were too close together, and she was butchered and her good health insurance milked.

For all that it’s worth I would wait awhile (at least a year if you can) before having another surgery so soon in the same year. Wishing you the BEST in whatever decision you make. Maybe you should also get a 2nd opinion from another Neurosurgeon about it.

Hello Jada, I am also new to this site, and I read your story and it is a very confusing and scarey situation. A CT showed two aneurysms, one on the left side 4mm, the other on the right 6mm, so I have seen a neosurgeon who has suggested clipping the 6mm. Where it is situated they have to preform a cranitomy, and they said they would worry about the 4mm later. I am scheduled for an cerebral angiogram on the 4th. of Nov. then they will decide when to do the surgery. The Dr. also mentioned that I have a weak spot on the bigger annie, and this also scares me!!! Aslo, they mentioned that I could end up with complications with my speech after the surgery. I came right out and asked the Dr. if he thought that I needed surgery and he stated yes. I am feeling anxious, scared, numb, and depressed. I am generally a stong person, but this is playing tole on me. My family live so far away, and I miss them especially right now. They are so supportive and many prayers are being said for me. I have to travel 5 hours to the hospital that has a neosurgeon, and I find him very noligable, he is a assistant professor in neo. so I am fourtunate to have a good Dr. You see I have had high blood pressure for 29 years, and I am 55 years old. I will be so thankful to have this all over with, for I can feel better. All I want to do right now is sleep. I have a 28 year old son, and he is my life, and my strength. I am in a new relationship and he has been wonderful so far, but I think he is in denial. Be strong my dear Jads, and \i will also pray for strength for you too. God Bless You!!!

Jada, I can understand your anxiety. I have had similar. 4 1/2 yrs ago I had a SAH with rupture of Rt PICA aneursym. Drains, Crainiotomy, 2 week coma and then recovery. At one of my check-ups the Neurosurgeon informed me I had another 7mm aneurysm which needed to be taken care of now that I was on the recovery from the 1st trauma. Also he added it was too big for coiling and there would be a second crainiotomy! I was sick…my body seemed to shut down and I fought off panic! Long story short I had it done 3 weeks later. I’ll tell you having a planned surgery like this is much different than the SAH and emergency situation. I went to the hospital early one day, had the surgery on a Monday am and on Wednesday was sent home mid day! On Thursday I was eating Thanksgiving Dinner with my family! I did have some swelling and black eyes but was home! The peace of mind getting the other annie fixed was well worth the bit of anxiety I had waiting for the 2nd surgery. You know with the first rupture there’s no advance notice, planning, time to worry, etc. Now that we have had the emergency situation we realize what happened and what could have happened so it’s only natural to stress and worry. Have faith…in God, in your family, in your doctors…Take care, Barbara :slight_smile:

Oh that is so glad to hear. I had an emergency rupture and now a scheduled one for February. I know this reply was for someone else, but it relieved some of my anxiety! Thank you!

Dear Bonita,
I read about your experience and your upcoming testing and surgery. I had a ruptured brain aneurysm about three years ago and it was an emergency so I didn’t have time to think and I wasn’t even aware at that time what was happening to me. My husband and children were left to make decisions and to worry. Even though I was so critically ill and almost didn’t make it, I almost think knowing about the problem ahead of time is worse from the worry standpoint. Have faith, especially in your surgeon. I think that any doctor who is in this field is so well educated and so brilliant. He or she will take excellent care of you and you will be back with your son and your new relationship. God bless you. Sharon

Thank you Sharon for these inspiring words. Yes, I agree with having time to think, it is very hard on your emotions. It would have been so hard on your husband and children, and Thank God that you are with them. It is also wonderful to have all you kind people to share your stories with. I will take your advise on having faith in my Dr. and my prayers. My Family live so far away, and when I chat with my Daddy he has a prayer with me on the phone, I am still very fortunate to have my parents in my life. God Bless to you and your Family.

Sincerely, Bonita

Tina, Glad my words have helped you. Also, after my rupture I returned to work 4 months later, parttime, 5 days a week for 2 weeks then back to fulltime. After the planned second surgery I was out just short of 4 weeks and went back at 8 hrs per day right away! Alot of your recovery will be in how you deal with it! Take care, Barbara :slight_smile:

Jada, don’t be strong. Talk to your Husband and family about your fears. I cry everyday. My husband crys too. My husband had a bleed on 3/15/10 and they coiled it. then he had a stroke in the hospital. to look at him you’d never know he was sick until he starts to talk. – He returned to work 12 weeks after his stroke. He does building maintenance. He goes for a craniotomy clipping on his other smaller aneurysm (it’s not life threatening at this point). He has told me he doesn’t want to be a “mentally handicapped person” or on life support. This is hard the whole way around. But I will (with respect for him) God forbid if it comes to that - I will honor his request for no life support. DO YOURSELF A FAVOR - DON’T HANDLE THIS BY YOURSELF. YOU NEED YOUR FAMILY SUPPORT. GOD BLESS YOU, I WILL PRAY FOR YOU.

It does help, a lot! I do trust my surgeon-I think he did a wonderful job the first time and he has been very calm and patient with answering all of my questions. I know that he will do a good job.

After talking to my husband, I also know that he doesn’t expect me to be strong. He expects me to lean on him and on God. He admitted that he was scared for a minute, but that he turned his fear over to God. I have done the same thing-I need to remember that the next time that fear creeps up.

Thank you so much for your kind words Sharon!!!

Audrey I am glad that I could help you! My recovery the first time was much better than expected. I don’t want to wait and have the possibility of another rupture hanging over my head. Thank you for your kind words. I was really have a rough day!

I am so sorry to hear about your aunt. That has to be difficult, knowing that you are dealing with the same sort of thing. You have a big decision to make. Let me know what you decide. I wish you the best also!!

I think it is wonderful that you have so many supportive people in your life. Your boyfriend and your son sound like they will be a tremendous help to you and that is awesome!

I will pray for you too. He hears and answers our prayers and I am SO thankful for it. And He equips surgeons and hospitals to take care of us who need it :-)! I know it is hard and I hope everything goes well with your angiogram on the 4th. I understand how you feel about wanting to get it over with-it can be a bear!

Barbara, you are so right! The first time, everything happened so fast that there really wasn’t time to consider what ifs and maybes. This time, there is time to plan, think, and prepare and I need to do all three. Except, I need to do it with the right attitude. If this is what is best for me and for my family, everything will work out fine. I can’t worry and stress out. I just have to trust God and know that He has it under control. I love the timeline you shared! Since my second surgery will be just before Christmas, I want to get back home so I can enjoy the holidays.

I need to learn how to tie scarves on my head though-don’t want a lot of holiday photos with half of my head shaved ;-)!

Thank you Cindy. He and I had a long talk on the day I originally posted and that helped a lot! I feel much better now.

I will be praying for you and your husband. When will your husband have surgery? Let me know how everything goes for you both.

Hi all I had a rupture aneurysm in Sept 2009 I had a partial coiling, in Sept 2010 I had surgery more coiling and a stent I got told I would probably die on the table, well that didn’t happen!!! I can tell you that I fall apart 3 days before surgery I cried day and night I couldn’t handle seeing my children, it hurt to much that the chances if them growing up without me was very high, I couldn’t talk about it because every time I went to open my mouth I was a mess. No-one could understand where I was coming from, on the day of the surgery I started to cry before hand I said to my surgeon " can you please try to keep me alive" , I don’t think anyone had said that to him before his look on his face was amazing he looked at me and held my hand and said " I haven’t lost anyone on my table and you are not going to be my 1st I promise" here I am over a month later and doing so well to the point I can’t believe it, it is 1.35am I was watching my 5 year old sleeping and starting crying because I can not believe how lucky I am to be here and how precious my baby is I thank God every day for my 2nd chance of living. The emotional roller coaster is amazing I never deterred from my faith, but to be honest it didn’t stop my fear but the joy of getting through it is totally amazing I hope this helps someone. God bless and take care Kia kaha ( stay strong)

OMG Lorna - what you said is so very touching. I’m sitting here crying for you.

God has blessed you, my husband and everyone who has aneurysms, bleeds, stints, clippings, and our families. I’m so happy for you. My husband has to get a craniotomy clip done on his 2nd smaller aneurysm. it’s not life threatening at this point. Hoping to get it done Summer 2011 when our daughter is out of school for the summer. take care and god bless.

Jada, i’m so glad you talked to your husband. Thank you for your prayers. We are thinking in Summer 2011 when our daughter is finished with school for the year. She’s 15 yrs old and in the 9th grade. She’s an honor student and it’s just too stressful worrying over the what if’s before the surgery is performed. Where do you live? We live in Greensburg, PA.

I am in Columbus, Ohio. We considered waiting until school was out-kind of like an anniversary of the first craniotomy. I decided not to wait-I don’t want this hovering over me and I want my family to have their lives back. I want us to get back to stress-free living.

I do understand about keeping your daughter’s focus. I’m a teacher and I know how kids get anxious about things in their families. We aren’t telling our kids where I will be. They are too young and if I get to be “in and out” like my surgeon says, it doesn’t make sense to upset them. They will be staying with my sister-her house is like Disney World for them :-)!

Lorna! I’m glad you are here to enjoy your sweet baby! And I’m glad that your surgeon took the time to make you feel better. Sometimes I think that makes a lot of difference!

I hope that I am feeling as good as you a month after my craniotomy. I will be adding that to my prayers!!