Mom's having a craniotomy on Wednesday. Could use some positive experiences please

Hi everyone,
First of all I would like to say thank you so much to all of you who contribute your time and stories to this site. It has helped me tremendously while helping my mom deal with her AVM and given me insight.
My mom had a massive headache on August 15th which turned into a bleed and a stoke. The bleed was in the back right of her brain. The blood had gotten into the ventricles and the brain had shifted quite a bit past midline. They said she wasn’t a candidate for surgery because it wouldn’t really help. The next day the doctor told us to say goodbye and I was even walking down the hall when I heard them yelling across the hall to each other that they had the organ donor center on the phone for my mom. That was horrible. Miraculously, the marvelous neurosurgeon saw something no one else did and decided to do a surgery to drain the blood. In the end, it saved her life. She was in ICU for a month, on a breathing tube and feeding tube for three weeks, was unresponsive for many days. Today she is home breathing and eating fine, walking with a walker (left side is still weak) and has her same loving personality. Of course she is more tired and has a little trouble concentrating but I just really feel like we were granted a miracle and are so lucky.
So they found that an AVM caused the bleed and she has already had an embolization. She will have a 2nd embolization on Tuesday and then a craniotomy on Wednesday. I think we could all (including her) use some positive craniotomy stories or experiences. I know that everyone heals differently and I have read many of your amazing stories but we are all really scared. We will love her regardless. I know some of you say you were never the same and I will love whoever she is but I just would appreciate any advice or stories you can give me. Thank you so much for all of your responses.

I haven’t had a craniotomy,but I’m sending up prayers for your mom!

Hi, my son Andrew is six months out from his second crainiotomy. He had a massive brain bleed on 4/8/08, 5 brain embolizations, 2 crainiotomies 7/09 and 3/09. His AVM was the size of his fist and very complex. His bleed also mainly bled into the ventricles. They were able to get a drain in before the pressure was to great. It was in the left medial frontal lobe. Even with the bleeds and surgeries he has no deficits. After his first surgery we even had neuropysch testing done and there were no underlying deficits. He just started 7th grade and is maintaining a B average. After his first surgery he woke up very slowly, when he woke he could not move his right side or speak within hours he was speaking and moving. When he got home he had mild weakness in his right leg which resolved its self with normal activity. He has no weakness and needed no therapy. Two and half weeks after both of his surgeries he was back at school. His whole journey has been a true miracle. I hope this helps and my thoughts will be with you and your mother.

My son also had two craniotomies and is doing very well.
Try to read these topics:

http://www.avmsurvivors.org/forum/topics/1543517:Topic:9608
http://www.avmsurvivors.org/forum/topics/1543517:Topic:66548

Positive Experience: It has been 24 years since my cran and I am still going strong and plan on going strong another 24 years (at least). I am now 51 years old. If you would like to add me, please feel free to do so. I don’t want to take up too much room on the discussion board. However, would be more than glad to tell you of positive experience…after all. I am a champion and still fighting the fight…not only for myself…but for all of us.

For my craniatomy, it takes about 6 months for the brain to heal from the craniatomy, but I felt much better within a few months. The first weeks were SOO hard, then it started to just little by little get much better. I had a much harder time with recovery from the bleed, the AVM was small and in the right parietal. Surgery was about 3 hours long. I went into surgery in critical condition from the bleed, so it was very scary for my sisters. They say the waiting for the surgery was very tough for them. My room was surrounded with balloons and friends sent email messages (hosptital had via website), and put my childhood teddy bear and my yankees cap on it, to remind me of my mom and my baseball team, and the combo was so cheerful that I always had it by my bedside in all both the hospital and rehab. Reminders of how much she’s loved and things she loves that are small and can stay with her throughout are good. My surgeon told me to type on a laptop ‘as soon as i could’ to regain my left hand and it was good therapy ( I’m a great typer now). My advice is to surround your mom with things to be cheerful about, whatever she loves and it really cheers you up. My hospital had a reiki-trained volunter do guided imagery with me, i had a couple of massages, and it all REALLY helped add moments of relaxation. I wish I had these things: music to listen to, a noise-free headphone to GET SOME SLEEP, and I really loved having someone there even when i insisted that i didn’t. Anything to help relax and get some sleep because it’s such a noisy/stressful place to be. It’s surreal to be surrounded by so many people, but to feel so alone . I was off any really hard medicine within a few weeks of the craniatomy. They buzzed my hair, and my hairdresser came into rehab to give me a haircut, waxing, etc. and I felt so much better afterwards.

Tell your mom that great improvements can happen with hard work, time, patience but to also rest when you’re tired because your brain needs extra energy when it heals. Good nutrition, walk around as able, and you just never know. Also, I had my massive bleed in 2004, craniatomy at the same time, and i was so down and didn’t think I’d ever come so far as I have. Your mom and family is in my thoughts and prayers!

Thank you so much!

Connie T said:

I haven’t had a craniotomy,but I’m sending up prayers for your mom!

Thank you for sharing. I am so happy that your son is doing so well! That really is a miracle. He must be a really strong guy and you must be really proud of him. That’s amazing that he was back to school so fast!!

Janice Brown (Andrew’s Mom) said:

Hi, my son Andrew is six months out from his second crainiotomy. He had a massive brain bleed on 4/8/08, 5 brain embolizations, 2 crainiotomies 7/09 and 3/09. His AVM was the size of his fist and very complex. His bleed also mainly bled into the ventricles. They were able to get a drain in before the pressure was to great. It was in the left medial frontal lobe. Even with the bleeds and surgeries he has no deficits. After his first surgery we even had neuropysch testing done and there were no underlying deficits. He just started 7th grade and is maintaining a B average. After his first surgery he woke up very slowly, when he woke he could not move his right side or speak within hours he was speaking and moving. When he got home he had mild weakness in his right leg which resolved its self with normal activity. He has no weakness and needed no therapy. Two and half weeks after both of his surgeries he was back at school. His whole journey has been a true miracle. I hope this helps and my thoughts will be with you and your mother.

Wow that must’ve been really scary. I’m glad you are doing so well now. I know that they say time and sleep are key and I’m going to make sure she’s eats healthy foods as well. What a good idea about the no noise headphones. Thanks. I never know if it’s better for her to move around (she’s weak on the left) or rest so I try to balance both but I know sleep is really important. Thanks for sharing your story and giving me great advice.

Sharyn Laney said:

For my craniatomy, it takes about 6 months for the brain to heal from the craniatomy, but I felt much better within a few months. The first weeks were SOO hard, then it started to just little by little get much better. I had a much harder time with recovery from the bleed, the AVM was small and in the right parietal. Surgery was about 3 hours long. I went into surgery in critical condition from the bleed, so it was very scary for my sisters. They say the waiting for the surgery was very tough for them. My room was surrounded with balloons and friends sent email messages (hosptital had via website), and put my childhood teddy bear and my yankees cap on it, to remind me of my mom and my baseball team, and the combo was so cheerful that I always had it by my bedside in all both the hospital and rehab. Reminders of how much she’s loved and things she loves that are small and can stay with her throughout are good. My surgeon told me to type on a laptop ‘as soon as i could’ to regain my left hand and it was good therapy ( I’m a great typer now). My advice is to surround your mom with things to be cheerful about, whatever she loves and it really cheers you up. My hospital had a reiki-trained volunter do guided imagery with me, i had a couple of massages, and it all REALLY helped add moments of relaxation. I wish I had these things: music to listen to, a noise-free headphone to GET SOME SLEEP, and I really loved having someone there even when i insisted that i didn’t. Anything to help relax and get some sleep because it’s such a noisy/stressful place to be. It’s surreal to be surrounded by so many people, but to feel so alone . I was off any really hard medicine within a few weeks of the craniatomy. They buzzed my hair, and my hairdresser came into rehab to give me a haircut, waxing, etc. and I felt so much better afterwards.


Tell your mom that great improvements can happen with hard work, time, patience but to also rest when you’re tired because your brain needs extra energy when it heals. Good nutrition, walk around as able, and you just never know. Also, I had my massive bleed in 2004, craniatomy at the same time, and i was so down and didn’t think I’d ever come so far as I have. Your mom and family is in my thoughts and prayers!

Thank you for those links. They have a lot of great stories and information.

Erica said:

My son also had two craniotomies and is doing very well.
Try to read these topics:



http://www.avmsurvivors.org/forum/topics/1543517:Topic:9608

http://www.avmsurvivors.org/forum/topics/1543517:Topic:66548

I too had the massive headache and an emergency crainiotomy 5 years ago. Just be there for yor mom… my daughters & husband really keep me going. We are lucky to be here:)

First let me wish you and your mother the best of luck with her upcoming surgery. Her story sounds very similar to mine. I had my bleed in May of last year and my surgery that June. The worst part was having to regain all of the strength that I had lost, but a month of rehab took care of a lot of that. I’m doing very well now. I have vision loss issues and some memory loss, but I am able to function very well considering the size of bleed I had. Although I am unable to do a lot of things I used to do, I am still able to be a mom to my 2 girls, who I love dearly. I am very much the same person I was before, except that I don’t sweat the small stuff and I have a much greater appreciation for life. Please let us know how your mother is doing!

HELLO,
pOSITIVE THINKING =INNER LOVING CARE. MY WHOLE FAMILY REMEMBERED ALL THE POSTIVE MOMENTS THEY SPEND WITH ME, THIER LOVING CARE FOR ME MADE IT POSSIBLE TO CONTINUE LIFE HERE ON EARTH. YOU CARE/LOVE YOUR MOMMIE, IT WILL WORK OUT FOR THE BEST. HANG IN THERE, MY PRAYERS.

Geans how is your mum?

Hi Margaret,

Thanks so much for asking? She’s doing really great right now after her bleed, stoke and first embolism. Tomorrow she will be going in for her second embolism and Wednesday is the craniotomy. Please send positive thoughts her way if you can and I will update later this week. Take care!

margaret said:

Geans how is your mum?

Hi Laura,
Congratulations on being such a survivor. It is a miracle and I’m sure your family is so happy. You’re so right that life if what you make it. No matter what you can be happy if you choose to be. Thanks for sharing your story.

LAURA MEADE said:

hi geans.
in june 2005 i had an anuerysm as a result from a avm.it is said to be a miracle i survived.i take no meds.i have had six brain surgeries.they told my kid i would die. they life flighted me.i was in a coma. i have a brain shunt but i’m still hot. i have to learn balance all over again.my point is that you make life whatever you want it to be.

Hi Trish,
I’m so glad that you are doing so well and able to be a wonderful mom to your girls. It does sound like my mom, she has some vision and memory issues, but that is so much better than all of the doctors told us she would be. She is so much weaker and I’m sure each day that’ll get better. How long were you in the hospital after the surgery?

Trish said:

First let me wish you and your mother the best of luck with her upcoming surgery. Her story sounds very similar to mine. I had my bleed in May of last year and my surgery that June. The worst part was having to regain all of the strength that I had lost, but a month of rehab took care of a lot of that. I’m doing very well now. I have vision loss issues and some memory loss, but I am able to function very well considering the size of bleed I had. Although I am unable to do a lot of things I used to do, I am still able to be a mom to my 2 girls, who I love dearly. I am very much the same person I was before, except that I don’t sweat the small stuff and I have a much greater appreciation for life. Please let us know how your mother is doing!

Hi Carolyn,
My mom does say she feels very grateful and we’re all trying to be here for her with whatever she needs. I’m so glad you have such a wonderful and supportive family to help you. Did the craniotomy take care of all your headaches?

Carolyn said:

I too had the massive headache and an emergency crainiotomy 5 years ago. Just be there for yor mom… my daughters & husband really keep me going. We are lucky to be here:)

Geans,

Sending thoughts and prayers to you, your mom and your family, and looking forward to the good news from your mom, post-craniatomy. A nurse told me, a few weeks post-surgery, that I’d feel lousy at first, but at some point, I’d turn the corner, start to feel better, and it’ll be much better from there. I thought that was good advice. I’m with Laura, life is what you make it and when you focus on all you have, not what is lost, life gets a little bit easier and a little bit sunnier for all of us, including us AVMers. I’m sending my prayers for you, your mom and your family. Let God’s serenity and strength embrace and carry all of you through.Will check on thursday to hear good news.

Hello Geans and family,
We will be thinking of you all tomorrow! It is exactly one year ago today that my husbands AVM burst and he had his craniotomy 8 days later (9/30/08). He was in a lot of pain after his 6 hour surgery of course and really had good and bad days during his recovery. He was extremely tired/sleepy for about 3 months which is expected and we encouraged him to give into those feelings and “recover”. He also was in quite a bit of pain during that time and it took a while for the doctor to get a pain med that would work for him.
I remember those days well, although it’s been a year they are still VERY fresh in my mind, we are so blessed he came through his surgery and recovery well! I’m not going to say it was easy as it was not, but love, support, and many prayers is what brought us through it!!!
Bless you and your family, we will be thinking of you and look forward to your updates!
Marie