Our story: Hi my husband was diagnosed... - Cavernoma Allianc...

Cavernoma Alliance UK

409 members112 posts

Our story


Hi my husband was diagnosed with a brainstem cavernoma in March 2015 and suffered a major bleed which resulted in lots of physio to get him walking again plus speech therapy. He has made the most amazing recovery and is 80% recovered. This year though there has been an increase in the size of the cavernoma plus 2 new bleeds resulting in double vision and numbness in his face tongue and fingers. His surgeon won't operate unless he really has to. Has anyone got a similar experience? We would be really interested to hear your stories....thankyou

2 Replies

I had a cavernoma in my brain stem which bled in 2012 which caused numbness down one side of my body although it didn't affect my sight. It did cause some trouble with swallowing. I was told that operating was not an option. The feeling gradually came back over a couple of months as the bleeding stopped and I was feeling back to normal. I was referred to Sheffield Hallam hospital Stereotactic Radiosurgery Unit. In Feb 2013 I had Gamma Ray treatment. I have not had another bleed and have had yearly MRI scans have been fine. So it may be an option you could consider. Best of luck.

Tanp65 in reply to Warwick

Thankyou for sharing your story. Yes we have heard of this other type of treatment but our surgeon is not keen to refer my husband....but it is definitely worth looking into as he has had 2 micro bleeds within 12 weeks of each other. Good luck to you.......