Do You Feel Like Your Condition Has Been Downplayed?

Many people with cavernoma tell us the same thing: “I don’t feel taken seriously.”

If you’ve ever been told your symptoms are “not that bad” or that your condition is “just something to watch and wait,” you are not alone.

Unlike AVMs (arteriovenous malformations), cavernomas usually bleed more slowly. Because of this, some doctors may describe them as “less serious.” But anyone living with cavernoma knows that’s only part of the story. Cavernomas can still be dangerous depending on their size and location, and symptoms vary widely. For some, the impact is life-changing.

Even if your cavernoma hasn’t bled, just knowing you have a lesion in your brain or spinal cord can be deeply unsettling. Add in symptoms like seizures, weakness, or visual changes, and the anxiety can be very real.

Migraines and Cavernoma

One of the most common frustrations we hear from members is around migraines. Many patients experience them, yet doctors often say cavernoma is not directly linked. Why? Because research hasn’t been able to prove a consistent, biological connection between cavernoma and migraines. From a medical point of view, this means doctors can’t confirm cavernoma causes them.

But here’s what matters: lived experience. Many people with cavernoma do have migraines, and whether it’s caused by the cavernoma itself, by small bleeds, or by the stress of living with the condition, the pain is real and deserves to be taken seriously.

Why This Matters

Being told to “watch and wait” without proper support can feel dismissive and lonely. That’s why the Cavernoma Society exists – to make sure you’re not left unheard, unsupported, or brushed aside.

We believe every cavernoma patient deserves:

• Compassion and understanding
  
• Clear, honest information about their condition
  
• Access to support services for both symptoms and emotional wellbeing
  
• A community that recognises their struggles and their strength
  

 

Your concerns are real. Your symptoms are valid. And your condition deserves to be taken seriously.