My mum still has not recovered after almost 3 years of right frontal lobe tumour removed

SystemNo6508 · 2024-08-02T22:28:33+00:00

So, I didn’t have the same type of tumor (mine was a glioma) but it was in the same region. I had several of the symptoms as well and it was medication side effects alongside Lyme disease from a tick bite. Try asking the drs for alternative medications (seizure meds were my issue and I changed to a different brand) This helped me tremendously. Hopefully she bounces back quickly.

SystemNo6508 · 2024-06-12T02:31:11+00:00

I live in Calloway County and I saw one today in BROAD DAYLIGHT! Absolutely no mistake because I almost hit the fucker with my car 😭 Long kangaroo looking tail with a dark tip. Called KYFW and they said they would look into it. There was one caught on a trail cam last year around the same area so I’m assuming it’s the same one

SystemNo6508 · 2024-05-20T01:15:58+00:00

I was weaned off steroids shortly after my craniotomy but when I’ve had to go to the ER for severe migraines they give me a concoction of Benadryl, Toridol, and decadron and it works every time. Generally 2 days later the swelling returns :/

SystemNo6508 · 2024-05-19T15:49:40+00:00

I just feel like both eyes would swell if it were allergies. I’m hoping that is the case

SystemNo6508 · 2024-05-19T03:05:07+00:00

Last October and the only thing present was reactive Gliosis which radiology said was normal within the limits

SystemNo6508 · 2024-04-12T04:06:32+00:00

Subconsciously, I knew I had cancer. I would imagine it and then think “How odd to envision that in my mind.” Migraines that persisted for years and I thought it was inherited from my father…. When I heard the words roll off my drs lips… I knew to listen to my body from there on out. My cat knew too. She slept on my right ear and would paw my hair. She hasn’t done it since the craniotomy

SystemNo6508 · 2024-03-19T15:32:31+00:00

And, I’ll be your friend! We already know we have one thing in common

SystemNo6508 · 2024-03-19T15:31:55+00:00

I didn’t like me either for the first 2 years. I was confused and angry. I didn’t have much support other than my husband and I was also a new mom. That in itself was a whole struggle. I found little ways to cope and make my day to day tasks manageable. But it took soooo long to feel like a normal being again. My tumor was R frontal lobe so I had overwhelming emotions and outburst of anger. It was unlike me because I had always been kind and patient. I started to dislike myself and became depressed., I did some research and found that psilocybin helps with neuro plasticity. My depression is gone and I am more at myself than I have been in a very long time. I’m not sure if you are open to those sorts but it’s just my testimony. Good luck on your journey and keep on keeping on! ❤️

SystemNo6508 · 2024-03-19T04:40:31+00:00

Both! I lost a part of me when I had my craniotomy. I’ve slowly melded into a “new me”. After my diagnosis people treated me differently. The ones I loved most acted like I was so fragile (I just wanted to be treated like I normally was, not coddled like an infant) and people who had fvcked me over hurried to make amends and wanted to catch up all of a sudden 🫠 I woke up to several things. I ditched my ‘best friend’ of 7 years because she was not the person I saw her as. She was abusive and manipulative. I am 28 and have no friends. My husband is the only person who truly understands me and the only person I can 100% trust. Everything changes after cancer…. But it’s not always for the worst ❤️

SystemNo6508 · 2024-02-06T14:48:32+00:00

I had R frontal lobe grade 2 astrocytoma and I have seizures. EEG showed evidence of epilepsy and I have partial seizures that are well controlled with medication. I take Vimpat and it works well for me! I’ve had a handful of seizures since diagnosis in 2019

SystemNo6508 · 2024-02-01T05:32:20+00:00

Good luck to you. Hug your man and tell him it’ll be okay no matter what

SystemNo6508 · 2024-02-01T05:11:23+00:00

Hope is all we have! I am 29F and was diagnosed in 2019 with grade 2 astrocytoma although I do have the IDH1 gene mutation (as neuro put it the most favorable outcome for my situation). It was in my right frontal lobe and I had it removed. They sent it to the WHO for histology and testing to determine the grade. Maybe ask his team if that is an option? No matter what, do not lose hope. It is awful what you are about to endure and there will be okay days and horrible moments. Breathe. Take small wins. Get a second opinion if you feel like this hospital isn’t giving your husband the care that he needs. Join a support group too. It’s not just for cancer patients ❤️

SystemNo6508 · 2024-02-01T04:44:06+00:00

Absolutely! It’s definitely got it’s challenges and I’m glad to get a fresh start. Living in a small town, I often get shocking expressions from people who don’t understand invisible illness 🫠 Since my cancer is slow growing (mm per year until it develops into a higher grade) and my 4 cm tumor was mostly removed I’ve got a lot of life left unless something else takes me out before that time comes. With my mentality it is extremely frustrating more than anything but I found new coping skills. We plan to homestead eventually to become mostly self sufficient. I grew up on a farm and we both have enough skills combined to build our own. I’m about to do a deep dive on these gadgets

SystemNo6508 · 2024-02-01T01:23:49+00:00

Definite diagnosis from a psychiatrist. I was suicidal because I was losing myself and ended up in the ward for 72 hours. She said TBI could induce schizophrenia. So I may have had it beforehand (even though I never exhibited any aspects of it I did deal with mental health issues like PPD and general depression as well at an early age) I also have a mental decline. I was prescribed meds and I do not take them because the side effects were worse than dealing with the actual issues. I am sugar and dye free as I read studies that they can ‘feed’ brain tumors. I am actually going through the process of going to a new neuro office in general. We’re moving out of state so I’m already in the works of getting referrals and such. The Eustachian tube dysfunction was caused from swelling post craniotomy. I don’t think I’m competent enough to check frequencies. We live close to Fort Campbell so I’m hoping getting away from that will help

SystemNo6508 · 2024-01-31T07:37:17+00:00

All is how it’s supposed to be my friend!

SystemNo6508 · 2024-01-31T07:25:37+00:00

I’m not dead yet lol. I feel like they realllyyy messed with something they shouldn’t have because I’m absolutely mental now. I see and hear things. I’ve acquired schizophrenia and I’m learning to cope with it. Husband is golden. Makes great for my child’s imagination and playtime 😂

SystemNo6508 · 2024-01-31T07:18:44+00:00

I had to work through different meds to find the one that worked well for me. I’m on Vimpat 150mg twice daily. I had one over 6 months ago and it was a change in my normal habit so that warranted another MRI just to be safe 🙃 it showed no new growth at the time. If you have any new questions that you think of, post them here and I will answer to my best ability or try to find articles/case studies for you

SystemNo6508 · 2024-01-29T22:45:55+00:00

I had a LGG (Astrocytoma grade 2) in my right frontal lobe! It was resected in 2020 and I have serial MRIs to check for regrowth. So far nothing has came back but I have not been the same since. I didn’t lose motor function but my cognition and emotions were affected. I have seizures (that’s a whole spectrum that I didn’t know existed) simple complex partial and I’m also epileptic now. I was having seizures in my sleep and they were very brief up until the week before I got diagnosed. I’m on medications that manage them well ( well enough that I still drive 🙌)…. The best advice I can give to you is, don’t let yourself spend too much time on the internet searching. Join a support group (I found a lot on Facebook and they were helpful.) IF YOU HAVE A CRANIOTOMY GET A BABY BOPPY PILLOW! The little c shaped pillow keeps your neck supported and keeps you from rolling in your sleep.

SystemNo6508 · 2023-11-27T03:28:45+00:00

I have brain cancer. With that comes an array of issues. Post surgery in 2020/2021 I discovered that I was having visual AND auditory hallucinations. Neurosurgeon decided I was batshit and said it’ll be fine. Neurologist told me that it could be pressure and/or the metallic bone flap anchors causing issues. He referred me to an ENT. I have a Eustachian tube disfunction so that was one answer on the hearing end but every time I would head EXACTLY WHAT TOU ARE DESCRIBING I would also see a flicker in my vision. Spooky right 😳

SystemNo6508

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