Meningioma diagnosis

I noticed there isn't a dedicated thread on this PDF specifically covering this condition, and I’m really looking to dig deeper into what it actually entails—especially regarding real-world experiences from others who have been through it.
While everything I’ve read so far suggests that the chances for recovery and getting back to normal are quite high, I’m still struggling with the uncertainty. What are the actual odds of someone failing to recover, or even passing away due to a Meninge tumor or its complications, even after the tumor itself has been successfully removed?

Feel free to shoot me a DM if you want to dig into anything—I'm happy to help. Honestly, don't let the whole meningeoma thing freak you out too much! It’s really not as scary as it sounds.

Hey there!

It’s been a year since my meninge surgery—I’m currently navigating what they call the "recovery phase." I spent time in the rehab unit focusing on motor skills, specifically my left leg. Now, I’m still essentially "shuffling" along, so I wanted to see if anyone here has been through this? Has anyone fully regained their stride? I’m already well aware of the endless exercise regimens—believe me, I’m doing the work—but does anyone have any actual, practical advice?

So, unfortunately, I find myself having to bring this topic up here.

A family member was recently diagnosed with a 1.8cm meningeoma located on the cerebellum.

Right now, they aren't showing any motor skill deficits, which is a bit of a relief given that
the tumor is sitting right where it shouldn't be, directly impacting motor function.

The big question is whether we should push for surgery immediately or just stick to monitoring it for the time being.
Should we look into options in San Francisco or head over to Washington, D.C.? Does anyone have a recommendation for a specific hospital?

Any advice or even just a nudge in the right direction would be incredibly helpful for us right now.

Thanks!

Is anyone else catching this?

Who provided the diagnosis? It is a reality that meningiomas don't typically exhibit rapid growth, but whether surgery is necessary depends entirely on the specific location, which a neurosurgeon will determine. In some instances, doctors opt for a "watch and wait" approach to monitor growth patterns; in others, if the tumor size allows, it can be addressed via Gamma Knife—meaning no craniotomy is required. As I understand it, in the US, Gamma Knife technology is primarily available at the Mayo Clinic, where Dr. Heinrich specializes in these procedures.

If surgery is deemed essential, the critical question is whether a total resection is feasible or if the tumor's placement makes an invasive approach too risky. There are also hybrid strategies: performing a craniotomy to remove what can be safely extracted, then treating any remaining tissue later with Gamma Knife. This is often the preferred route if a full excision poses too high a risk of permanent neurological damage that would compromise one's quality of life.

Beyond the neurosurgeons at the Mayo Clinic working with Dr. Paladin, I believe Dr. Chudy from the General Hospital in Brooklyn is also highly regarded. I’ve heard rumors they might be acquiring their own Gamma Knife unit, so it might be worth inquiring.

Generally speaking, intracranial tumors are benign in over 90% of cases. Roughly 7% are classified as atypical—occupying a middle ground between benign and malignant—while only about 2% are truly malignant.

copperlynx22 said:Who actually handed down the diagnosis? The reality is that meningiomas aren't exactly fast growers, but depending on where they’ve decided to set up camp, a neurosurgeon will decide if surgery is the way to go. Sometimes the move is just to wait and watch how things evolve, while other times you can handle it with Gamma Knife—which means no skull opening—provided the tumor isn't too massive. As far as I know, in the US, Gamma Knife is mainly available at the Mayo Clinic, where Dr. Heinrich handles those cases.

If surgery is on the table, you have to figure out if a full resection is even possible or if the location makes being too invasive a bad idea. There are also hybrid approaches where surgeons perform a craniotomy to take out what they can, then follow up later with Gamma Knife—basically, if cutting everything out would be too risky and threaten the kind of quality of life someone actually wants to live.

Besides the neurosurgeons at the Mayo Clinic working with Dr. Paladin, I believe Dr. Chudy over at the General Hospital in Brooklyn is quite excellent. I think there was some talk about them acquiring a Gamma Knife soon, so it might be worth asking around.

On a lighter note, brain lining tumors are benign in over 90% of cases; about 7% fall into that "atypical" gray area, and only about 2% are actually malignant.

Thanks for such a thorough breakdown.
The Diagnoza was made in San Francisco.
Word on the street is that the big university hospitals and the Mayo Clinic are the best places for this sort of thing. At least, that's what people say.

I wonder how much of a headache it is to get on a waiting list for that Gamma Knife treatment if it ends up being necessary?

Gamma knife scheduling depends entirely on the clinical indication; you can't just wait indefinitely. It all comes down to patient volume and specific diagnoses—basically, how urgent each case is considered by the medical team.

A family member of mine underwent a craniotomy, followed by Gamma knife to target the remaining tumor that was too risky to excise surgically.

None of the doctors or nurses at the Mayo Clinic where they were treated were looking for any kind of reward or special recognition.
From what I observed, they simply go above and beyond for everyone.

Check your PM.

I’m posting this in hopes that my experience might offer some clarity to anyone else navigating similar territory.
To give you the short version—as the title suggests—I underwent a craniotomy to remove a 5.5 cm tumor located right in the center of my motor cortex. Since then, I’ve been dealing with weakness in my left leg. Even three and a half years post-op, the physical therapy continues—mostly just to maintain the progress I’ve made and ensure I can actually walk at all, thanks to some incredibly intense rehab. Following the surgery, I went through radiation therapy. It was originally suggested, and eventually became absolutely necessary due to both the tumor type and its size, even though my post-op brain MRIs looked clean.
I’m not saying this to express regret—the procedure saved my life, and for that, I am profoundly grateful—but the quality of life hit a significant snag. I can’t go for a run, I can’t ride a bike, and I have to wear a wig to cover the area where radiation prevented permanent hair growth. Plus, there’s the daily reality of living on anti-epileptic medication...
If anyone finds themselves facing this diagnosis, please feel free to reach out. I’m only 27, but having been through the wringer myself, I know how difficult it is to find any truly useful information.

Greetings to everyone. It has been exactly one year since I first began battling these debilitating headaches, which led to an MRI revealing a 2x4 cm meningioma on my trigeminal nerve. Rather than succumbing to despair, I chose to confront the situation head-on with decisive action. I submitted my medical records to both the Mayo Clinic and Johns Hopkins for evaluation, receiving prompt responses from both institutions. Ultimately, I placed my trust in the specialists at Johns Hopkins under the care of Dr. Paladin, and looking back, I know I made the right choice. The surgery was a resounding success, and my recovery was remarkably swift, save for one minor complication—a case of keratitis in my right eye, which I am currently managing with specialized drops and ointments. After a four-month medical leave, I returned to my career, and everything has finally returned to normal. Today, I find myself dancing through life and truly embracing every moment. 😁

I'm starting this thread just to share my own story. Three months ago, I had surgery to remove a meningioma at Mayo Clinic with Professor Paladin. It was located right on the frontal lobe, but they got the whole thing out, and honestly, I haven't had any side effects at all. I’m getting ready for my follow-up now—just finished the MRI and everything looks solid. I still have two smaller ones I’m hoping to take care of with Gamma Knife toward the end of summer. I just wanted to tell everyone: a meningioma isn't a death sentence. As shocking as that diagnosis is when you first hear it, once you actually dig into the details, you realize things aren't nearly as bleak as they sound. Huge props to the entire neurosurgery team at Mayo; they truly go above and beyond for their patients.

Hey everyone,

So, I’ve had a rough road lately. I ended up having a meningioma in my thoracic spine, which was causing absolutely brutal pain in my SI joints, my sciatic nerves, and all my lower back muscles. It took six agonizing months of endless testing just to finally get an MRI that caught it... and then I had to wait another two months just to get the surgery scheduled.

Fast forward to now: it’s been about two and a half months since the operation. The pain has definitely dialed down quite a bit, but it hasn't fully vanished, and I'm dealing with this weird tingling sensation in my legs that I never had before the surgery.

Has anyone else gone through something similar? If so, how long did your rehab take to actually feel like yourself again?

Best,

Sent from my Samsung Galaxy using Reddit

Hi there,
About seven months ago, my mom had a benign tumor removed from her left frontal lobe. The surgeon was optimistic, thinking the psychological side effects—things like cognitive decline, personality shifts, and her becoming completely dependent on us—would eventually fade as she returned to her old self. Unfortunately, we aren't seeing much progress. On top of the mental struggles, she’s physically struggling too; she deals with constant tension, restlessness, muscle spasms, and uncontrolled eating, yet she's actually losing weight. It's tough, though we do get these sudden flashes of lucidity that give us a little bit of hope. Right now, she's on low doses of medication for brain circulation, epilepsy, and anxiety. Her psychologist thinks therapy won't help much, but the neurosurgeon still believes she should be improving. If anyone has dealt with something similar or has advice on how to help speed up the recovery process, I would truly appreciate it.