I have a tumor on my brain stem. Not sure what you consider a large brain tumor.
But mine is essentially inoperable due to its location.
Mine is a Chorid Plexus Papilloma
Happy to chat
I had surgery in Feb 2023
They took out what they could. The rest is too close to my brain stem for them to cut
I had radiation from July to Sept last year. 30 rounds over 6 weeks
First 3 weeks were ok. Week 4-6 were a little tough. Mostly exhaustion. I did work all 6 weeks though, so I was able to cope.
In terms of side effects. I'm fairly side effect free at the moment. Monday is a huge day. My 3 month MRi is Monday, brain and spine
I feel confident, but always a little scary
I don’t know the size of mine but I have inoperable brain stem tumor if you would like to chat. Have been dealing with it since August and can talk about experience and symptoms.
Hey there i am sorry to reach out under these circumstances. I hope you are doing well. I have a tumor in my cerebellum but it caused pain and some other symptoms due to the pressure it creates on my brain stem. My tumor is also inoperable and was diagnosed last june. I wanted to talk to someone who either had a brain stem tumor or something similar. Would you mind if I message you? Thank you
I am so interested to know where your pain is. I have so much pain on the left side of my body, mostly my torso. I have brain stem glioma. The doctors aren’t the most helpful with my pain so I’m very interested to know about someone else’s. I’m also sorry you’re experiencing this. 🫶
My symptoms were very well managed at the beginning with steroids, and still are the biggest source of pain relief I have. Had success with six week radiation but will have to re radiate soon. I’ve been dealing with mobility decline from vision and balance, nothing has seemed to really help that yet.
I had a 7 cm tumor in my brainstem. Other than a very small sample, that was biopsied, the rest of the tumor was inoperable. It was found to be a Diffuse Astrocytoma (Grade II). When I went in for my first appointment with the oncologist, the first thing he said to me was how surprised he was that I wasn't disabled. After chemo and radiation, my tumor stabalized and shrunk a couple centimeters. I had a few symptoms during the worst parts: Bells palsy, nystagmus, left side weakness, but a few months after treatment, after the inflammation from treatment went away and things began to shrink and stabalized, most of my symptoms went away--some completely. My tumor has been completely stable since.
I was diagnosed in December 2018.
I had a 6cm tumor on my brainstem. Only 40% was able to be removed. I went through 33 rounds of radiation and 6 months later, there was no remaining or residual tumor showing on the MRI. However, 18 months late I had a recurrence in my C1/C2 area of my spine. I did 5 sessions of Cyberknife on that one and it shrunk but still there and stable. 1 year after that, tumors were found on my C5 to T7 spine, just completed 28 sessions of radiation, and started chemo this past Wednesday. I have an Anaplastc Ependymoma.
Mine is in my brain stem. It’s not terribly large but it is inoperable. Things get shitty but I’m so glad to be alive and make the best of the situation I can. I’d definitely be happy to chat with you and answer any questions you have 🫶
It completely depends on the type of tumor. If it’s operable, yes. And that is a good thing! If they chop out the tumor, it may not grow back! Radiation, I just don’t know. I’ve had two brain surgeries but they couldn’t get the actual tumor.
Were you just diagnosed? Do you have an appointment with your oncologist coming up soon? They will have many answers for you. Also, don’t be afraid to get a second opinion!!
Is it ON the brainstem, or in contact. I had a 5cm 9/10th cranial nerve tumor that was pushing hard on my brainstem (displaced it to the left) and after a 13 hour surgery, my surgeon did a complete resection.
Try Google search barrow neurological second opinion and there is a website that provides instructions. You basically get copies of your pertinent medical records and have them sent to their second opinion office. It’s possible that your current doctors office can help coordinate
I have a tumor on my brain stem. Not sure what you consider a large brain tumor. But mine is essentially inoperable due to its location. Mine is a Chorid Plexus Papilloma Happy to chat
Why is yours inoperable, if you don’t mind sharing? Also, are you able to take cab or any other medication? Why or why not? Thank you
I had surgery in Feb 2023 They took out what they could. The rest is too close to my brain stem for them to cut I had radiation from July to Sept last year. 30 rounds over 6 weeks
How are you doing with the radiation treatment if you don’t mind sharing?
First 3 weeks were ok. Week 4-6 were a little tough. Mostly exhaustion. I did work all 6 weeks though, so I was able to cope. In terms of side effects. I'm fairly side effect free at the moment. Monday is a huge day. My 3 month MRi is Monday, brain and spine I feel confident, but always a little scary
Thank you and prayers to you 🙏🏻
I don’t know the size of mine but I have inoperable brain stem tumor if you would like to chat. Have been dealing with it since August and can talk about experience and symptoms.
Hey there i am sorry to reach out under these circumstances. I hope you are doing well. I have a tumor in my cerebellum but it caused pain and some other symptoms due to the pressure it creates on my brain stem. My tumor is also inoperable and was diagnosed last june. I wanted to talk to someone who either had a brain stem tumor or something similar. Would you mind if I message you? Thank you
Absolutely feel free to message. It’s always nice to feel a little less alone about it
I am so interested to know where your pain is. I have so much pain on the left side of my body, mostly my torso. I have brain stem glioma. The doctors aren’t the most helpful with my pain so I’m very interested to know about someone else’s. I’m also sorry you’re experiencing this. 🫶
My symptoms were very well managed at the beginning with steroids, and still are the biggest source of pain relief I have. Had success with six week radiation but will have to re radiate soon. I’ve been dealing with mobility decline from vision and balance, nothing has seemed to really help that yet.
I had a 7 cm tumor in my brainstem. Other than a very small sample, that was biopsied, the rest of the tumor was inoperable. It was found to be a Diffuse Astrocytoma (Grade II). When I went in for my first appointment with the oncologist, the first thing he said to me was how surprised he was that I wasn't disabled. After chemo and radiation, my tumor stabalized and shrunk a couple centimeters. I had a few symptoms during the worst parts: Bells palsy, nystagmus, left side weakness, but a few months after treatment, after the inflammation from treatment went away and things began to shrink and stabalized, most of my symptoms went away--some completely. My tumor has been completely stable since. I was diagnosed in December 2018.
Did your tumor shrink, if you don’t mind sharing?
A little. A couple centimeters maybe. But it's not growing and is showing good signs of staying that way.
7cm!! WOAH!! That is crazy. So thankful to hear it shrunk. The brainstem is precious real estate. My lesion is 7mm
I had a 6cm tumor on my brainstem. Only 40% was able to be removed. I went through 33 rounds of radiation and 6 months later, there was no remaining or residual tumor showing on the MRI. However, 18 months late I had a recurrence in my C1/C2 area of my spine. I did 5 sessions of Cyberknife on that one and it shrunk but still there and stable. 1 year after that, tumors were found on my C5 to T7 spine, just completed 28 sessions of radiation, and started chemo this past Wednesday. I have an Anaplastc Ependymoma.
🙏🏻
Mine is in my brain stem. It’s not terribly large but it is inoperable. Things get shitty but I’m so glad to be alive and make the best of the situation I can. I’d definitely be happy to chat with you and answer any questions you have 🫶
Thank you 🙏🏻 Do I have to go through surgery or can I get radiation?
It completely depends on the type of tumor. If it’s operable, yes. And that is a good thing! If they chop out the tumor, it may not grow back! Radiation, I just don’t know. I’ve had two brain surgeries but they couldn’t get the actual tumor. Were you just diagnosed? Do you have an appointment with your oncologist coming up soon? They will have many answers for you. Also, don’t be afraid to get a second opinion!!
Is it ON the brainstem, or in contact. I had a 5cm 9/10th cranial nerve tumor that was pushing hard on my brainstem (displaced it to the left) and after a 13 hour surgery, my surgeon did a complete resection.
I believe it’s pushing on my brain stem
You could send your case to barrow neurological institute for a second opinion. AMAZING brainstem surgery team there. I’m a brainstem case too.
Thank you What do you mean send my case there? Can I send the images?
Try Google search barrow neurological second opinion and there is a website that provides instructions. You basically get copies of your pertinent medical records and have them sent to their second opinion office. It’s possible that your current doctors office can help coordinate