Newly diagnosed

[Optomisticgirl]

I have a cavernoma in my fourth ventricle, which was discovered a month ago after a bleed. I was discharged from hospital after 2 days with an MRI arranged and more to follow. Like others on this site the doctors do not have experience of dealing with this and haven't given any advice. I rang my doctor to ask if it is ok to drive, swim, climb ladders and was told they cannot find anyone to advise me. Have decided that i will continue to live with optimism and not restrict my life. I am going to the local meet up in November and hope to meet others with same condition and gain some advice.

[otonal]

I’m so glad you have found Cavernoma Alliance as they really helped me after my bleed in the left temporal 3 years ago. Stay optimistic it’s not the end of the world!

It’s worth asking about Caverbuddies and Neurology referrals at the meeting, they will know what is available in your area.

When I saw the consultant (Professor Werring at University College London), he was very reassuring, but advised me to avoid driving, heavy lifting and excessive alcohol. I had 2 further scans but have now been discharged.

You will need to tell the DVLA. You can do this online.

My GP stopped any medication associated with a risk of bleeding which includes painkillers such as aspirin and nurofen. I was put on statins and blood pressure control, but of course this may vary.

I was lucky enough to avoid any mobility problems, but continue to struggle to find words sometimes and still get uncomfortable in crowds, particularly if there is bright lighting and noise. Your symptoms may be very different or you may find you get back to normal very quickly, fatigue is very common.

There’s a lot of alarming and out of date info. on the internet, but good links from the Cavernoma Alliance site.

No sign of another bleed and have just taken up running (NHS Couch to 5k).

Good luck! Ottiex

[Optomisticgirl in reply to otonal]

Thank you so much for your reply, I have been really relaxed about it but started reading too much this morning and felt a bit anxious after. I am looking forward to the meeting and obtaining more info as I haven't been given any advice so far.

Glad to hear about the running, thinking of taking it up myself. Hope your heath continues to improve x

[otonal in reply to Optomisticgirl]

Hi, thanks for your kind wishes, It’s nice to call myself a runner rather than a patient. The Cavernoma Alliance groups on Facebook are much more active than Health Unlocked & you can get an invitation to join the private UK Support Group via the website. There’s nearly a thousand members, enjoy!