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Cavernoma Alliance UK
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Hello! Coming to terms and Options

Hello everyone

First time posting and apologies in advance if it's a little long-winded..! I am 33 years old, originally from South East London but am currently residing in Hong Kong.

I was diagnosed with a cavernoma back in October 2017. It was a Monday night that I had (what I now know to be) a seizure, but at the time I honestly felt like I was going to die. It was like a continuous panic attack with a severe migraine. I told the hospital team that a few weeks before a car park barrier had fallen hit my head and so they gave me a CT scan which revealed to show bleeding on the brain. A few days later after an MRI it was show that I had a cavernoma approximately 1.3cm big on the right side of my brain, not too far from my right ear (so the right cerebral hemisphere). They told me that it was manageable with painkillers, that I could return home and continue living a normal life.

For the next few weeks right through to December I was experiencing what I called 'episodes' - the way to describe it easiest is similar to the sensation that rushes over you all of a sudden putting you into panic attack mode. I have had about 5-6 of these 'episodes' up until now but also feel my mood being affected quite strongly and also alot of fatigue/tiredness. I regularly attended gym before my first bleed and now I go maybe once a week and very, very lightly (i find any physical activity that raises my heart rate can trigger off these symptoms).

I have seen a few different doctors (all private) who have all suggested I just manage the symptoms, although surgery is an option. I went for a recent checkup (last week( with the hospital and the neurosurgery team there are the best in Hong Kong. I happened to see the head of the department who explained to me clearly that these 'episodes' were focal seizures. The doctor explained that the location of the cavernoma was close to the part of the brain that manages emotion and memory, so when the cavernoma is irritated, it affects this part the most. Very strong overwhelming feelings of depression and fear immediately take over and I just have to lay down and rest.

This doctor has offered two options to consider - seizure medicine to control the focal seizures and the other is surgery. He said that if i take the seizure medicine then I would have to take them for the rest of my life as many people (it's similar to people with epilepsy). In regards to surgery, he said that there is a low risk given the location and that a good neurosurgeon can remove it relatively easily.

I will be following up with the doctor with more questions to both these options but to be honest, I am leaning more toward surgery .

I have read through may posts on the forum and given the status and symptoms of my cavernoma I haven't really felt that I should be saying anything because so many people here have more severe cases. It was my brother and sister who prompted me to reach out and talk about it with people who suffer from cavernoma's. Managing my emotions have been quite tiring over the last few months, but being aware of what causes these feelings has given me some sense of control again. When the seizures/episodes occur, my head goes to very dark places and it can really take it's toll on me. As many of you may have also experienced, I have had a very hard time accepting that this is a part of my life now and only recently have I began to truly take the necessary steps to make my life better. In terms of lifestyle, I cannot workout no where near as much as I am much more tired than before. A good thing is it has helped me focus more on my work (as an freelance illustrator and designer) and my diet and general health.

I just wanted to say hi to everyone and see if anyone has any similar symptoms to the ones I do? Or if anyone has had surgery? It can be really quite isolating and scary when the focal seizures happen.

Another question I have is that my doctor said that this is unlikely genetic, but I wanted to know how can you tell if a cavernoma is genetic or not? I've always wanted children but I've been told that if a cavernoma is genetic then there is a 50% chance of it being passed onto your children and this has made me re-think if I want kids.

Reading these posts have helped me immensely. Apologies again if I'm babbling on.

Thank you for reading :)

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Hi LunWong84.

Firstly, so sorry to read about your diagnosis and the difficult time you have been having. It can be a very scary and lonely time when you are diagnosed, particularly because Cavernoma isn’t the most common of diagnoses and it can be difficult to access information and contact others in a similar position.

All your questions are extremely valid and others with Cavernoma will fully empathize with what you are going through.

If you would like to, what I would suggest is that you becOme a member of Cavernoma Alliance UK (while we are based in the UK we do have a number of international members and a lot of info/support can be done online). Along with gaining access to good and certified information about Cavernoma, the main advantage I think for you would be that with membership (which is totally free and takes only a couple of minutes to set up) you can gain access to our secret Facebook support group where members share stories, ask questions and air any concerns or issues they are experiencing. It is a very warm and friendly community and completely protected (you can’t find it by searching through Facebook). This might be a good place for you to ask your questions and chat it out with other sufferers. We have a lot of members in similar surgery dilemmas, dealing with epileptic medications and managing new diagnoses.

If you would like to become a member you can do it here;

cavernoma.org.uk/

And simply click ‘become a member’. Of course there is no obligation for you to do so but we would be happy to welcome you should you choose to join us.

Best wishes and we hope this finds you well today

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