Cavernoma Alliance UK
322 members97 posts

Pontine Cavernoma

Hi everyone! I consider myself very lucky for finding out about this community as I felt so alone for almost 5 months now ever since I was diagnosed with cavernoma. Symptoms started a few years ago when after being so stressed due to one of my relative's death, I experienced extreme vertigo and was needed to be hospitalized for a few days. At that time, I did not manifest any neurological symptoms, so I was discharged once the dizziness was gone. But last year, there was this time when I did not feel the ground on my feet while I was walking, and suddenly had severe vertigo again. My anti-dizziness medications were no longer able to control my dizziness and that started my fear. Just 5 months ago, while at work, I started to feel numbness at the tip of my tongue, which eventually progressed to the whole left side of my tongue and throughout the left side of my buccal area. On the way home, I experienced severe vertigo, and I had several bouts of vomiting, which caused be to be admitted again. On MRI, it was found out that I indeed have cavernoma on my left dorsolateral pontine area. My neurosurgeon advised for me to take a rest first. Now, my family and I contemplate on having it removed for we worry a lot whether it would rebleed again. I just graduated from a university and am just starting my career. I no longer want my future to be limited because of this, and so we're choosing to take an action. Neurosurgery or gamma knife are being offered to me. I am having a dilemma on which one to take. I would gladly take up any suggestion from someone who has almost the same, if not the same case as mine. What were the options offered to you? Does anybody know whether we are allowed to ride in planes or not? If you did have surgeries, did you experience any rebleeding again? Thank you. God bless all of us.

2 Replies

Hi I've just read your message and replied to another message earlier. Here is our story.

February last year my partner came home from work not feeling very well, blurred vision (which looking back he had had for months) tingling feet and hands and face and generally feeling unwell, we went to A & E who were going to send us home with a viral infection but at the last minute they decided to do a CT scan, which came back that he had had a bleed (stroke).

He was admitted to the stroke ward but progressively got worse over the next few weeks, we waited another week for an MRI scan which came back with a Cavernoma in the Brain stem which had burst and was causing the stroke and these symptoms. At this point he had limited use in his right arm and leg, he couldn't walk, he couldn't see, couldn't hear, go to the toilet, he couldn't sit up, was feeling dizzy and sick, his body was shutting down.

They did emergency surgery within 2 days of the MRI to remove the cavernoma, there were very high risks as it was deep in the brainstem, but we had no choice and didn't know how it would turn out and didn't know what medical issue she would be left with.

When he came out of the operation he could see again, hear again, the sickness had gone, but he was paralysed down his right side. We were devastated, it felt like our lives changed.

A year on and through determination he is walking again, albeit with a stick, but unforntunately his arm and hand will not return. We are learning to adapt and we do, he has just started to drive again and has had a car adapted and we have set up a new mobility business, we have been abroad on holiday and are going again in July.

So life can carry on and whatever the outcome you will adjust. . We knew nothing about Cavernoma until Colin was 47 and going to A &E that day to having surgery it was 4 weeks.

We went for another MRI in September and all clear, so although Colin has been left with the disabilities it has gone and I did read it was better to get rid of it altogether.

I hope this helps and all the best.


I just read your post. Thanks for the reply. I'm glad to hear you are coping well with the situation. I, on the other hand, is trying to live a normal life. I am just 30, but when I tried to apply for work again, the employers are so afraid to hire me because of my condition. My only deficit is the loss of taste sensation on the left side. I am now starting to feel depressed again because despite me trying to live as normal as possible, the community treats me otherwise. Thank you.


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