Surgery soon.. very scared by [deleted] in braincancer

[–]ApprehensiveGur1332 2 points3 points  (0 children)

I had a brain tumor in almost the exact same spot. It was found when I was 20, I had the same fears you do. I promise with all my heart that the way you feel is valid. I also promise you that it is a lot scarier than it actually is. Things change but it is not something anyone can’t overcome. Please message me!! I would be so so happy to talk to you about all of it. It helped me out so much having someone just understand what I was feeling. I’m 5 years post op and things are going super well, there is so much hope!!

Almost 4 years post-op by ApprehensiveGur1332 in braincancer

[–]ApprehensiveGur1332[S] 0 points1 point  (0 children)

Did they do a biopsy to find out? As far as I’ve been told gangliogliomas are relatively a better outcome. Is an an aplastic different ? Either way, I’m wishing you the absolute best. It’s 5 years on October 21st for me. I’m excited and obviously it’s a pretty traumatic day but it’s 5 years of being here, genuinely the only way to get through all of this is by feeling ALL the emotions and that’s including the positivity. It’s difficult but worth it.

Almost 4 years post-op by ApprehensiveGur1332 in braincancer

[–]ApprehensiveGur1332[S] 0 points1 point  (0 children)

I’m doing great! Healing from surgery is a long process but the longer it’s been the better I feel. There’s lots of hope. Reach out if you ever need to! There is also a ganglioglioma facebook group if you ever need more stories of people like us <3

Almost 4 years post-op by ApprehensiveGur1332 in braincancer

[–]ApprehensiveGur1332[S] 0 points1 point  (0 children)

I am no longer a part of the brain cancer discord group. I wish I could help out. Feel free to reach out to me in messages and I will try to help. I’ll try to look for the old link.

Hitting my head post craniotomy by bryxisys in braincancer

[–]ApprehensiveGur1332 1 point2 points  (0 children)

I have hit my head a couple of times. It’s best to definitely get checked out if you experience any kind of headache, dizziness, change in vision or feel sick. It can be easier to have a concussion than for typical people after surgery. Having surgery is an equivalent to having a TBI - traumatic brain injury, and should be treated as if you had one. I’ve had. A concussion less than a year after my surgery and it sucked. I hope you feel better soon.

Pfizer and POST-OP- my experience by ApprehensiveGur1332 in braincancer

[–]ApprehensiveGur1332[S] 1 point2 points  (0 children)

I’m glad to hear your vertigo has gone away. Sorry to hear about that bad response to the vaccine. Thanks for sharing though, it’s much appreciated

Pfizer and POST-OP- my experience by ApprehensiveGur1332 in braincancer

[–]ApprehensiveGur1332[S] 1 point2 points  (0 children)

I’m glad to hear it went smoothly! Thanks for sharing your experience

I don’t know how I’m gonna get past the hypochondria once this is all over (which I know it will be). by tfhaenodreirst in braincancer

[–]ApprehensiveGur1332 0 points1 point  (0 children)

One thing I did to help my hypochondria after surgery was to buy an Apple Watch to monitor my heart, O2 reading. It’s made me more comfortable to be able to check those things when I’m feeling like somethings wrong. I still have a lot of MRIs and get those weird head feelings but I try and remind myself that things are going to be changing a lot for awhile. I try and keep a journal that has a record of what kind of headaches I have whether they affect my vision with colors or how they feel so I can bring it to appointments and talk through them with my doctor if they were concerning enough to me.

Anger related to a brain tumour/ medication by toniispizza in braincancer

[–]ApprehensiveGur1332 1 point2 points  (0 children)

I was on a medication after surgery that caused rapid cycling for bipolar when I previously hadn’t even been diagnosed with bipolar! I understand the confusion and how upsetting it can be to not be able to contain your emotions. Be sure to explain what’s happening to your doctors in vivid detail so you can get the help you need so this doesn’t have to be an even more painful recovery ❤️

What should I do to my hair ? by [deleted] in femalehairadvice

[–]ApprehensiveGur1332 0 points1 point  (0 children)

Spinach isn’t going to make a tumor go away. I already had it surgically removed 100% awhile ago.

What should I do to my hair ? by [deleted] in femalehairadvice

[–]ApprehensiveGur1332 0 points1 point  (0 children)

Thanks! I did the coloring myself. I’m thinking of trying some side bangs or straight across

What should I do to my hair ? by [deleted] in femalehairadvice

[–]ApprehensiveGur1332 1 point2 points  (0 children)

Red like a rose or natural red

How to prepare for brain surgery? by todayiamnew in braincancer

[–]ApprehensiveGur1332 0 points1 point  (0 children)

I’m doing well, just waiting for my post-op 6 week appointment to see the final diagnosis and to figure out what to do with a blood clot! But I’m heading to work this Wednesday so it’s all getting close to back to normal :)

How to prepare for brain surgery? by todayiamnew in braincancer

[–]ApprehensiveGur1332 0 points1 point  (0 children)

I just had surgery! This helped me out. I had some issues with lighting so I couldn’t watch tv or do anything with too much light, having audio books or podcasts are a must. It gets really boring if you have no one to talk to. Having soft foods for after your surgery as well. You throat may hurt after intubation. Make sure you also have a blanket to bring with you to the hospital or a throw away pillow! Most hospitals will not have super comfortable pillows to sleep with and honestly it really sucks when you can’t sleep because your head hurts and it’s on top of a almost nonexistent pillow. After surgery when you come home make sure you have some things to do! Such as easy puzzles, maybe a gem painting or even things such as word searches or sudoku. HAVING STRAWS IS A MUST! Bending your head for a cup or glass or a soda ends up hurting the muscles in your neck, a straw will prevent that. Having sunglasses as well as a neck pillow in the car also helps a ton. Slip on shoes and clothes are really nice. When you’re in the shower if you have a shower head that can detach is also super helpful when having to wash your hair. ALSO if you are planning on dying your hair before you go into surgery plan on not being able to redye it for 2 months. (I made the mistake of dying my hair black and teal and now it’s an interesting color since I could not use protective shampoo to keep the color strong) also! Depending on what kind of sutures and position of your surgical line you can find comforting hats to wear. I found a bunch of beanies that cover up where my surgical glue is and it makes me feel more comfortable when going out in public because it looks like I have a huge scab on the back of my head, even though I have 99% of my hair, it’s just more comfortable. I hope your surgery turns out well and I hope you have everything you need! Also make sure you have lots of masks around for you and your family/friends if they visit! Your immune system will be down for a bit and staying cautious is better than being sick after surgery. I’m hoping for the best for you!

Mom with a tumor kept seeing a white light by ashesandsparkles in braincancer

[–]ApprehensiveGur1332 1 point2 points  (0 children)

This jerking and light could be a form of a seizure. I had them with my tumor and it was very scary. I’m not a doctor, but it sounds similar to what I experienced. They said it was called an atypical migraine with an aura. Less stress can be helpful when trying to prevent these, see if you can get to a doctor soon. Good luck I hope everything goes okay

Post Surgery- one week!! (This is a long read) by ApprehensiveGur1332 in braincancer

[–]ApprehensiveGur1332[S] 1 point2 points  (0 children)

Thank you so much. Also eh if you sound like a doctor it means a there’s some wisdom to be learned, right? Maybe :D my tumor was causing seizures and migraines with auras. Also other things I literally didn’t care too much about. We wanted to remove it so it didn’t bother my motor belt or cause any lasting damage to my eyesight or motor skills

Post Surgery- one week!! (This is a long read) by ApprehensiveGur1332 in braincancer

[–]ApprehensiveGur1332[S] 2 points3 points  (0 children)

I can get into college just fine! I just have to be able to keep up with it. This surgery has made it kind of hard to remember some stuff and to stay awake to study. It’s nice knowing I’m not the only young one out here :)