I Had Brain Surgery - My Cavernoma Story Time: Part 1

Рет қаралды 1,100

3 жыл бұрын

This will be a series of unedited videos about my journey with having brain surgery and what life has been like since then. I've spent literally years trying to make this video and no time was or will be perfect to tell it. If you have or know someone who has a cavernoma drop a comment!
I hope through this series if you have the patience to watch it, that you might gain a better understanding of what someone's experience might be like with dealing with a brain injury and or surgery.
This experience has taught me a lot about myself and has opened my eyes to people living with unseen traumas. Please feel free to share your stories below or any questions!
Some helpful links about cavernomas:
cavernoma.org.uk/
www.angioma.org/
www.angioma.org/newly-diagnos...

Пікірлер: 8

@joanngoad3710 3 жыл бұрын

Thank you for sharing your story. You are a Strong lady !

@willis10077 2 жыл бұрын

I have a 1x1 cm cavernoma on my brainstem. Had a bleed in March 2021. Unable to have an MRI because of older pacemaker leads, so have had an angiogram and CT scans. Doctors in our area of Florida were clueless. Wouldn’t touch it, gave my prognosis as dire. My daughter is an RN and has had knee surgery at UF a couple of times with great care and result. Went there and saw Matthew Decker, young and I feel quite good. Although I really am not a candidate for removal, I am going to have a third ventriculostomy done to assure drainage as my cav covers my drainage of fluid. Have an appointment in November and will go from there. My life certainly has changed, double vision, tremendous anxiety. I have improved as far as gait. I am so interested in your surgical team and recovery process. Thanks for the information and all the best to you.🙏🏼

@joanacosta7258 3 жыл бұрын

@OKSikhStoryTime 2 жыл бұрын

this is so weird because your story is so similar to mine. in 2019, i was getting ready for night shift at the hospital. i had some coffee. started having palpitations and I the confusion you had with your arms, i had the same. then my wife drove me to the hospital i work at. I had a seizure at the hospital. Met the happy surgeon, told me the location of the giant cavernoma was at my right parietal/occipital border. question, were you able to exercise normally after the surgery?

@raquelbrown1759 2 жыл бұрын

Hey! I'm so sorry for the late response. I was limited for a month post op, but 3 months post op I was cleared to get back into all activities. I think its most important to prevent exercises that will increase head pressure, so like holing your breath, lifting heavy weights. Once the 3 months is over I got back into my normal running routines and BJJ.

@suneethaphanikumar4682 Жыл бұрын

Are you still using the medication to stop seizures after surgery??

@OKSikhStoryTime Жыл бұрын

@@suneethaphanikumar4682 nope

@raquelbrown1759 Жыл бұрын

@@suneethaphanikumar4682 Yes. My neurologist for my case specifically has reccomended I stay on Keppra for life. I have had almost no side afects from the meds, I have been seizure free since these two intital ones but she reasoned that because blood is a very sensitive stimulus to the brain and also now I have scar tissue and a giant hole in my brain lets count ourselves lucky the meds are doing their job. A lot of people who have seizures and cavs sometimes the mds dont fully prevent seizures or sometimes they need more of a cocktail med situation to prevent them. My surgeon seemed confident I could come off them but my neirologist gave more in depth explanations and she is more of the expert in this situation so I went with her opinion. Everyone is different though.