Recently diagnosed with Cavernoma

[revdaw]

Hello, I have been diagnosed with cavernoma within the right cerebellar hemisphere.

I fell on my head while running, so I went to hospital , had an MRI, they told me I had a bleeding (hemosiderin staining) measuring about 7,5mm in diameter.

I sent my MRI scans to a recommended neurologist (was away) he said the bleeding was not from the cavernoma but from the fall and that the cavernoma in my state is minor. I have not gone and seen him personally yet.

I always had difficulty breathing years ago during running, and recently I feel it more, I also feel that my legs are stiff and my running isnt as good.

I am planning on seeing the neurlogist in person to find out more information about the risks, etc.. but at the same time I dont want to know. He said I could run normally but lately I have been having headaches

My question is, does anybody know if it is safe to continue running? And is it worth to think about having it operated on or are the risks higher than living with it?

Thank you,

[EmmaJ70]

Hi - you would be better asking this question on the Cavernoma Alliance UK secret Facebook page where there are many in similar situations. If you go to cavernoma.org.uk/ and apply to become a member (it's free), then they will add you to the Facebook page where there are lots of us 🙂

[revdaw in reply to EmmaJ70]

Thank you, I will do 🙂

[CAUKcommunity16 Partner in reply to revdaw]

Hi Revdaw! Did you join Cavernoma Alliance UK? If not, you'd be most welcome.

[LunWong84]

Hello Revdaw

I have a similar situation to you. I am 33 and have a cavernoma that is 1.3cm big, which was discovered when a car park barrier hit me on the head (of all things!)

I was recently diagnosed (October 2017). Long story short in regard to excercise in general, I have had to cut down almost completely. I find running or anything that gets my heart rate up will irritate the cavernoma.

After seeing a few doctors, the most recent one has explained to me that the location of my cavernoma is close to the memory/emotion 'bank'. Because the outside of the Cavernoma has calcified, when irritated it sends electrons to that part (being closest) which leads me to have 'episodes' where i would be washed over with a state of depression and general fear and paranoia. What the doctor explained to me is that these are actually convulsive seizures.

Right now these seizures have been alot more manageable over the last few months with painkillers and less physical activity but it still plays up. My recent doctors visit gave me 2 options; seizure meds to control the seizures (but I would have to be on these for the rest of my life) or, surgery. Given the location of the cavernoma he said that it is not too far deep and a there is a good chance of it being removed with low risk. I'm actually going to follow up soon with the doctor with more questions about the 2 options but ideally I'd like to opt for the surgery if there is a good chance of it being removed.

I hope this helps.