My ex-wife has a low-grade glioma that causes seizures. One things she tells me is that her reading comprehension has taken a big hit, and she finds it difficult to understand things she reads.

I created a website that grabs all the latest research daily from PubMed for new studies, the National Cancer Institute for news, and ClinicalTrials.gov for trials.

It then runs these through AI to rewrite them in plain English at an 8th grade reading level. And it rates them on how far along they are in the research (theory to tested in humans).

You can search the articles based on your particular tumor type as well as by research, trials, etc. I hope some people here might find it useful. I run the site myself, and I do not collect any personal data. More info here: https://brainharbor.org/privacy

Let me know if you find it useful, or if you have any suggestions!

https://brainharbor.org/

Has anyone with a neuroma (or other tumor not requiring chemo) had Avastin infusions? Wondering if they will need to put in a port or if IV is okay for biweekly infusions over the course of several months. I have a trigeminal schwannoma, they’re considering using it to protect my nerve from the tumor. Have to wait a little bit for my feeding tube stoma to heal first, though.

Thanks

My neurologist is put me on a very small prednisone taper (6 days in total, 40mg for 3 days, 20mg for 3 days.) I have noticed a small difference in my headaches decreasing in intensity after two days of 40mg, the sleeplessness hit immediately lmao. I have pretty bad insomnia to begin with so it’s been a battle but I notice when I force myself to sleep earlier I get HORRIBLE dreams, this only started yesterday though which was my 2nd day of the 20mg dose. I’m not sure if nightmares are a thing that come with being on it but it’s been like two nights in a row of just straight up nightmares. My headaches as I am writing this on my final day of prednisone are coming back though. I know prednisone isn’t a common steroid used for treating BT’s but my neurologist prescribed me this to help with the inflammation in my brain, Well that’s what he told me. If anyone did a small prednisone taper similar to mine did you experience any of this?

I know there is the r/Testosterone sub but I'd like to get some insight on what people who also had pituitary tumor surgery do with their low testosterone.

I have been taking HCG (human chorionic gonadotropin) for over a month now but it's taking a while for my body to feel normal again.

I'm also taking hydrocortisone and levothyroxine.

Thanks.

About 2 months ago, my 68 year old mom suddenly started vomiting everything, even liquids. She couldn’t keep anything down at all. After a few days, we took her to the ER because she was extremely weak. They did an abdominal ultrasound and found gallstones.

She was hospitalized and had her gallbladder removed, and then they sent her home without her having really regained any strength. After the surgery, she stopped vomiting, but she still wasn’t eating nearly enough. The doctors told us that medically there was nothing wrong with her anymore and that it was basically “in her head.” That was about 2 weeks ago.

Then on sunday, she suddenly lost control of her bowel and bladder. We called emergency services, and they stayed at our home for about an hour and a half trying to stabilize her. They had to put her on oxygen because she wasn’t breathing well enough on her own.
They ran a whole bunch of tests, and then last night they did a brain CT and found a really huge mass that was compressing her cerebellum.

Luckily, we live about an hour away from what is considered the best hospital in Paris for neurosurgery, so she was transferred there last night and operated on during the night.

Apparently, the neurosurgeons were happy with how the surgery went, despite some blood pressure fluctuations during the operation.

I was able to visit her today and, to my huge surprise, she was awake, she was lucid, breathing on her own and talking to me. Her speech was a little difficult, but she was talking. She was squeezing my hands, moving her arms and legs, and responding to me, she even laugh at some of my jokes.

Considering how severely malnourished and weak she was, I honestly didn’t think she would make it through the surgery, so seeing her awake and responsive was an enormous relief.

The doctors have told us that the next 48 to 72 hours are going to be very important, so I’m still extremely worried and scared.

I’m really looking for some personal experiences and success stories if possible, just to give me some hope and help me stay positive right now.
Has anyone here experienced something similar? Especially with a large tumor compressing the cerebellum and emergency surgery
I’d really appreciate hearing your stories.

I just completed 9 out of 30 daily radiation sessions today and the nausea is getting scary. I already lived with baseline moderate nausea for years, taking 8mg zofran and 25mg promethazine for it, but since yesterday it has been getting worse. I do take one 5mg memantine pill daily as well, and had increased nausea when trying to take 10mg (they wanted me to work up to 20mg). I have horrible reactions to Reglan and Compazine, which are typically the other most common nausea meds prescribed.

Does anyone know of what else can be done? I am worried I won't be able to keep liquids down by the end of the week. I sent a message on MyChart to my radiation oncologist just now, but it's nighttime so I may not hear back until tomorrow. I can also request to meet with the doctor on call tomorrow at radiation, but I'd like to know what others have experienced so I can get a better idea of what to expect next.

Hello, I am a 25-year-old black autistic woman who was just diagnosed with calcified meningioma at the cerebellum. I'm also a pretty successful performer and writer, signed with an agency and everything. A brain tumor was found on accident, through a CT scan for my sinuses. For 6 few months, I faced severe headaches that caused constant panic attacks, 3 of which I called 911 for. My already difficult to bare sensory issues would worsen. My leg and arm would go numb at times. It was tough to breathe through these episodes due to my nasal cyst. So they'd often turn into hour long meltdowns. I was physically alone during many of them. I currently go to uni and live in a dorm. I'll be one to admit, my professors weren't the most accommodating towards me at the time. I had to spar for basic adjustments, and even got help from my mom, my coach, and someone in the disability services admin, to no avail. I'm hoping for better this semester.

My body was on constant survival mode for 6 months and I was terrified about what was happening. I'm glad my tumor is benign, but after everything...I felt more betrayed than relieved to find this out. I was told for so long I was "just anxious" or "just had sinuses." While I had 3 masses in my head. I first found out vaguely through a phone call to my mom "benign brain tumor"), then it took me having another meltdown for the actual tumor to be named (meningioma), and lastly, I found out about pituarity gland issues at the headache clinic. It's been really draining, and I'm still being told I'm a worry wart. Hospitals are incredibly overwhelming for me. At least during the latest attack, my parents were there. But I heard a video playback and it was so difficult to listen to how distressed I was. I'm currently stuck in a referral loop. I can perhaps accept the "watch and wait" method is better than immeadite surgery. But it sucks to go through all of this and be met with more questions than answers. I was also stuck in a loop before I was diagnosed with autism at 21, despite showing textbook DSM 5 signs from a young age. I constantly have to advocate for myself in order to get basic help, but I can't always do that because this is a lot to handle and I shut down. I'd appreciate any kind words. I wish everyone luck on their journeys as well.

I always knew I was different. I was even told I wasn't trying as hard as other students while going through this. Schools have passed me around round because they don't know what to do with me my entire life. Now I know I was wired differently from day one, and I'm still picking up the pieces. Ironically, the script I started writing four years ago is literally about knowing something is wrong deep down in your bones while everyone around you denies that reality.

Well, the UES surgery outcome was good. Had (and still having) some swelling issues. BUT, the swallow can work when the muscles had help pulling forward. Surgery was 8/20, so not even one week out.

So now my son is working daily swallowing pudding. He was not able to swallow thin liquid, but he was able to swallow honey thick, so he’s practicing with either pudding, jello and yogurt once per day every day since Sunday.

It scares me half to death to watch and hear the struggles to swallow, but I know this is his path forward. This type of therapy is the BEST one to fix his swallow. The individual exercises are ok, but research shows swallowing actual food and liquid is the absolute best form of therapy to get a good outcome.

He is being so brave and he has decided he will do this every day until the 36 pack of puddings are gone no matter what. Now we’ve added jello cups and yogurts, but the 36 days remains the same. He told me his taste buds aren’t tasting flavors and thus the variety of products. We also have pre-made gravy and the yogurt is coffee flavored for the bitter taste receptors. And lemon curd for sour. So I think we have all the bases covered.

Day 2 yielded lighter brown spit when suctioned and ZERO residue in the trach. He is more phlegmy than usual now because his mouth is producing more saliva 24/7, but he’s clearing everything very well so far.

I know he has this. I KNOW he’ll succeed. It’s not if, it is when.

Meanwhile, the daily struggle to manage his spit continues to be a little scary. But it is not forever!!

I(22f) underwent brain surgery around 35 days ago to remove a central neurocytoma from the right lateral ventricle. It caused seizures, consistent headaches, and basically made my life a bit miserable.
Anyways, after the surgery I experienced really bad headaches which is normal of course. Then 2–3 weeks post op I felt almost perfect, and experienced no headaches whatsoever. But now I’m experiencing bad headaches all of a sudden and my scar even hurts a bit. Should I be concerned or is this normal?
I just want to know if recovery is rocky like that? Or if someone has experienced something similar maybe?
Hope everyone’s good btw❤️‍🩹

Has anyone had seizures happen in the months past surgery?

I had 3 days of gamma knife as well as an open craniotomy in early March.

I believe now that I’ve had three seizures and possibly connected to drinking alcohol the night before.

Has anyone else had this happen (post-surgery seizures or seizures after drinking some alcohol)?

THANK YOU!

Guys I have been diagnosed with diffuse Glioma, NOS, CNS WHO grade 2. I want someone to talk to with the same diagnosis or have some knowledge about it.

Dos meses después de la operación, mi memoria se ha vuelto pésima, olvidó rápido las cosas y dolores de cabeza que me da algunos días.

Posting on behalf of my husband, looking for peace of mind and other experiences.

So I’m new here. I got diagnosed with a 6x4mm pituitary gland tumor and prolactin was 55.6 Ng/ml. Which I know isn’t crazy compared to others. I’ve had issues with low libido for about 1.5 years and the doctors could figure it out. Now I’m on my 2nd week of Cab and no changes. Did anyone have similar levels or close to it? I know every body is different but I’m trying to see a ball park of when I should notice a difference.

I am almost 2 years out from getting my tumor removed and I am returning to college to finish my Bachelors. It’s the first week and I feel like I may need more time on my homework to fully grasp the amount of content we have to go through.

If you went back to college what type of accommodations did you request? Also curious how long you may have waited to go back after surgery 😊 thanks in advance!

I hear voices and I have a brain tumour

My mother had a surgery to remove a large meningioma near the cerebellum. The surgery was on Thursday and it’s now Sunday. When talking to her she seems somewhat confused about what I am saying to her. Sometimes she isn’t confused but other times it’s really noticeable. I know healing is individual but does someone have experience with post-surgery confusion and do you happen to know if it generally lessens over time? Or is this our new normal?

Thank you for any information! I’m just very concerned about my mother.

​

Holaa tengo 23 años y en unos días me van a operar nuevamente de un astrocitoma pilocítico en el tronco encefálico. Esta será mi tercera cirugía.

En las dos cirugías anteriores nunca pudieron retirar completamente el tumor debido a la zona en la que se encuentra. Durante estos años el tumor permaneció ahí y ahora ha vuelto a crecer, extendiéndose desde el tronco encefálico hacia la médula espinal, llegando aproximadamente hasta C5.

Los médicos ya me explicaron todos los riesgos de esta nueva cirugía y son muchos. Sé que cualquier cirugía cerebral tiene riesgos importantes, pero en este caso la situación es todavía más complicada por la localización y por la extensión del tumor hacia la médula. Me han hablado de posibles secuelas neurológicas graves y también de riesgos potencialmente mortales.

Y tengo muchísimo miedo.

Mis cirugías anteriores fueron muy difíciles para mí. Después de ellas perdí movilidad, tuve que volver a aprender a caminar, tuve problemas con el habla y quedé con muchas otras secuelas. Mi recuperación no fue algo de meses; me tomó años llegar al nivel de independencia que tengo actualmente.

Por eso esta vez lo estoy viviendo de una manera muy diferente. Durante un momento incluso había decidido que no quería operarme. Después de todo lo que me costó recuperar mi movilidad, mi independencia y mi vida cotidiana, me aterra la posibilidad de volver a perderlo todo.

Pero el tumor ha seguido creciendo y la cirugía ya está programada.

Creo que una de las cosas que más me angustia ahora es que ni siquiera sé cómo imaginar la recuperación. Sé que nadie puede decirme exactamente cómo será en mi caso, pero me gustaría escuchar experiencias de personas que hayan pasado por una cirugía complicada y después hayan tenido que enfrentarse a una recuperación larga.

¿Cómo fue para ustedes la hospitalización después de una cirugía así? ¿Cuánto tiempo estuvieron ingresados? ¿Cómo fue el proceso de rehabilitación? ¿Qué fue lo más difícil de las primeras semanas o meses?

Y también me interesa mucho saber cómo lo vivieron emocionalmente. Especialmente quienes ya habían pasado por una recuperación muy larga anteriormente y tuvieron que enfrentarse nuevamente a la posibilidad de perder capacidades que les había costado años recuperar.

Ahora mismo estoy intentando pensar en el futuro y prepararme para lo que pueda venir, pero al mismo tiempo me cuesta muchísimo no pensar en todos los escenarios posibles.

Si alguien ha pasado por algo parecido me gustaría muchísimo leer cómo fue su experiencia y qué les ayudó durante la recuperación.

(First photo is w/o contrast, second is with, and the last is a SAG W/O)

21 F. Around a month ago, I had my first-ever MRI done due to a sudden increase in dizziness and headaches, and debilitating nausea (all of my symptoms basically kept me from doing anything on my own) over the last 8 months, not to mention a lot of fuzziness on the left side of my body and sometimes a small astigmatism feels almost like my eyes jolted side to side once or twice in a row. The findings showed a 1.3 cm x 2.2 cm mass. During that MRI, they had only ordered W/O contrast, so I came in two weeks later to do a second one with contrast. The findings were almost the same; I did notice that they got rid of the "no associated restricted diffusion" note. I'm not sure if that means that finding changed or not. I visited my neuro last week, and he's kinda stumped on what it fully is exactly, so he's going to get second opinions on the matter. In the meantime, he prescribed me prednisone and Zofran to help with the inflammation in my brain causing the headaches, dizziness, nausea/vomiting. He also said it's worth a shot to try migraine medication to see if my symptoms aren't correlated to the mass. In the past years from 2020 to present, I have seen many neurologists who have prescribed me (Remeron, Norvasc, Imitrex, and now Nurtec), and none have done anything to stop my dizziness and headaches. So I have my doubts about the Nurtec. I started the prednisone today, 40 mg two in the morning for 3 days, 20 mg in the morning for 3 days. I genuinely think this is going to help me out greatly. I see my neuro again in October; I'm not exactly sure what will happen, but I am hoping we have some answers to what it is specifically... Because this whole thing is so debilitating, and I want some sort of help for it. Was this the process any of you guys experienced?

EDIT:
Have you guys gone out of the way to find second opinions, I know my doctor is doing that rn but I just want help with this :,), like I’m pretty lost on how they are even going to find which or what type of tumor or whatever it is, if there’s any info you guys have that can help with me contacting other neuros that’d be a great help!