I am six months post tumour removal. As I see the words, I still can’t believe it. It was May 11, 2017. Six months from today that I had my craniotomy and my meningioma removed.
I am alive. It seems like such an incredible thing. Going into the hospital that day. The weeks leading up to that day. I was terrified that I could die. I didn’t. I am here. Healthy. Happy and into full recovery.
Day one of recovery in the hospital.
Everyone will recover differently. But I am sure that my story will be able to give others an idea of what to expect if they are going through something similar.
I had a meningioma removed from my frontal lobe. Measuring 3.8cm in diameter and once removed, the surgeon confirmed it was not cancerous.
First month I was tired beyond words.
I think I slept 18 hours a day for the first 10 days at least. It was tiring to watch TV or even talk to people. It felt like it took so much energy to
My surgeon did a great job.
even think. Not only did I have a horrible headache where the incision was healing, my thoughts hurt. You know when you are trying to concentrate on something really hard? It felt like that just to tell people how I was feeling. I was taking two Tylenol3 every 4-5 hours for the pain. It was very uncomfortable to lay down flat and hurt if I rolled onto the right side of my head. I spent these four weeks on the the lazy boy recliner. A quick check up with the neurosurgeon to make sure everything was on track. He said that I won’t have to see him again this point forward.
The second month was better than I had anticipated!
My pain was being managed with nothing more than two extra strength Tylenol as needed. Some days I would take six and some days I took none. I was sleeping eight hours a night but not comfortably. The wound still hurt when I would roll over on it. I was sleeping in my bed but had an orthopaedic pillow to keep it propped up. And I was still tired. One day, I was supposed to meet a friend and had to cancel her. I took a shower and half way through blow drying my hair I had to rest.
This was very hard for me. I was a super active independent woman. The extreme tiredness made me super frustrated. I think if I had kids this would have been worse. I was not walking Jasper more than 10 minutes a day. And this small amount of exercise felt like I had ran half a marathon.
Before and after.
I had issues opening my mouth. This was a problem the first four weeks but I was so focused on my headaches I didn’t notice my jaw. I so badly wanted to take a bit into a hamburger but physically couldn’t open wide enough. Sounds like they damaged a jaw muscle when they cut into my head. My amazing chiropractor did the graston technique on it and adjust my jaw. This was not TMJ. It is late – but I am working on a video for my youtube channel showing some of the work she did. For anyone experiencing this, it can be fixed and it was pretty easy. I think I had three sessions and I was back to eating burgers. I am getting back to my old self. No pain killers at all. Random, awful shooting pains happed on my scar. It felt like someone was stabbing my skull with a knife. It only last a few minutes a time so pain meds wouldn’t have helped. I was told this is jus the nerves re-connecting and was normal. It made my eyes water but was over quickly so I didn’t have much to complain about. I was back driving and was getting a bit stir crazy.
A quick check up with my family doctor because I was feeling ready to go back to work. Other than fatigue, I felt like I was ok.
4TH and 5TH MONTH.
I was really ready to get back to normal life. Going back to work and had virtually no pain. But I was still tired and weak. I got the thumbs up to go back to my normal life. Gym, yoga, hikes etc. But was told to listen to my body. I gained fifteen pounds and was desperate to get them off. Everything that once came as second nature was now a challenge. It was hard for me to ask for help, but it still took effort to be on my feet for more than a few hours at a time. Walking Jasper, doing yoga and hitting the gym was difficult but I forced myself to go.
The scar was unbelievably itchy and tight. I shaved off my hair again because I wanted to see how it was healing. The lady who does my bikini waxes said I had several ingrown hairs. Makes sense! I had 26 pretty big stitches and my hair was trying to grow back. She picked and prodded and gave me some stuff to put on it.
6TH MONTH
I wish I could say I am 100%. The pain is gone. I might have had one stabbing feeling for a few seconds last week? But it was minor and really I feel a non- issue. My head feels tight. When I yawn or laugh it feels different than it did before. I can not get off the last 10pounds and I don’t think I will. Sounds like some of the medication I was previously – some steroids or anti-seizure medication can effect hormones. The fact that I am officially ‘older’ and my hormones were changing anyways I think i am fighting an uphill battle. Add to the fact that I am still weaker than I ever was.
I bought my RV and am moving into it full time December 1! This brain tumour gave me a new lease on life and I am not going to waste a second of it. Life is short and I am grateful to be alive and healthy after the surgery.
I will go in next May for a follow up MRI to make sure the tumour has not come back. My fingers are crossed! This experience was not easy and I do hope that I won’t have to do it again. If you, or someone you know has a brain tumour that is benign. The recovery might not be that bad. Just have patience and take the time you need to heal.
I had a aneurism Braun.
Espero que la recuperación vaya bien
Great blog. So true.
I had one the same 70mm removed last year.
Everything you say is the same as me.
Glad your doing well.
Life is short. Enjoy. Ken x
Life is short! I hope COVID has been ok to you? After my tumour nothing can stop me!!
I love your story! I am 4 months post craniotomy due to a subdural hematoma. You definitely aren’t alone. I have had many of the same symptoms if not all of them along this journey. It all really puts life in a whole new perspective. Keep up the good work, stay positive, and keep recovering 🙂 <3
Sorry I missed this comment – but it looks like you should be 1 year from your craniotomy – how goes the healing now?
Thank you for writing this blog. I’m having mine removed on the 28 of April it’s pretty scary as a 33 years old mom of a 6 year old everything goes through your mind no matter how positive you are. My Doctor is very confident that everything will go well. Reading success stories is helping me calm my nerves.
It was one of the scariest things I have even been through. Trust your doctor and the medical professions. It is hard. But 3 years later I am doing good and glad that I can inspire others. Would love to hear how you’re feeling after your surgery. XO
I go in for surgery on February 10th. My story sounds similar to yours. Meningioma on the right frontal lobe but a little over 4cm. Every day I feel like I am going to throw up just thinking about what could happen. Thank you for sharing your story as it is a story of hope.
HEY! Sorry I missed this comment – the world is topsy turvy and I hope your recovery has been going well?
Hi, I am on week 3 of recovering from a craniotomy. My tumor was benign as well. I’m super tired too. I will think I can do that… and then get so tired I have to lay down for a couple hours. My biggest problem is not being able to lay flat. When does this go away. I have a huge headache anytime i try to lay flat so I sleep with a wedge pillow and use some more pillows on top of that. I also take extra strength Tylenol probably 3-4 times a day. Thanks for any help! I’m glad you have recovered!!!
SOrry I took so long to reply – it has been 6 months – How is your recovery going? I am going to do a an update on mine in the coming weeks. Having your head cut open has long lasting side effects. XO
What symptoms were you having when you found the tumor? I have been having terrible headaches, near blackouts and severe dizziness along with blurry vision and trouble focusing. I went to the ER when I had trouble walking the night before. They found I have a 1.7 cm tumor on my front right lobe. I seen the neurosurgeon yesterday and he said we will just monitor it and he doesn’t feel like my symptoms are caused by the tumor. I have never experienced any of those symptoms ever but reading online it says those are symptoms I’m confused and scared. I think I want a second opinion. Just thought I could get some input from you. Thank you!!
It is a very scary time. I am not a doctor so I can not give you another opinion. I would suggest that you ask your doctor for another referral. To get some support look on facebook! Good luck _ I will be thinking about you.
I am four days post opp. The pain is beyond what i had anticipated.
Yes – I felt like a drill was trying to drill through my skull. It will pass. Do what you can to relax and heal. Your skull is sensitive. Don’t let it stress you out that it hurts… It is normal. You got this.