Newly diagnosed

[Maggier2]

I've been diagnosed with a cavernoma back in June of this year following symptoms that were believed to be a stroke . I've just heard from the consultant today following a repeat MRI completed in October who informed me that my cavernoma is in my brain stem. I am interested in anyone else who has received a diagnosis as I have not received much support over this and still don't know what to expect. I have been referred for possible treatment but thus will be decided in a MDT in Nottingham

[CAUKcommunity16 Partner]

Hi Maggier2 - I am so sorry to read that you have no received much support after your bleed and diagnosis. This can make an already confusing and scary time even more confusing and scary. I completely understand. You are doing the right thing by reaching out and looking for others with similar experience. If you would like to - you are more than welcome to join our charity for free (Cavernoma Alliance UK) where you will gain access to information about cavernoma, and be able to connect with other members who have cavernomas themselves.

We have lots of members with brain stem cavernomas that have bled, just like yours. What you should know first of all is that every cavernoma is different, and no two journeys are the same. The precise location of your cavernoma will ultimately determine what type of symptoms you have and what kind of treatment you are able to receive. What kind of symptoms have you experienced from your bleed? How are you coping with them?

As for treatment, there are a few treatment options for cavernoma is general - resection via surgery, Gamma Knife surgery (stereotactic radiosurgery) or the 'watch and wait' approach. Generally, brain stem cavernomas are less likely to be removed via surgery because of their location deep in the brain and because the risk of damaging healthy tissue around the cavernoma is too high. This is not the case for everyone though and some people do indeed have surgery for brainstem cavs, again depending on their own personal decision and the exact cavernoma location. Gamma Knife is another, less common, treatment option thought we do have members who have successfully had their cavernomas removed through this process. Perhaps the most common 'treatment' for brainstem cav is the 'watch and wait' approach - which focuses on managing symptoms and hoping that the cavernoma does not bleed again. There is every chance that it will not. Many people have 'only' one bleed and learn how to manage and control their symptoms over time.

I hope this bit of information helps and clarifies. Apologies if you are already aware of this.

Are you receiving any help at the moment? perhaps physiotherapy if you have any numbness/weakness issues? are you taking any medication?

Please know that you are not alone - we are here to help you.

Feel free to ask whatever questions you might have and have a look at our website if you would like.

Sending lots of love and strength

[Maggier2 in reply to CAUKcommunity16]

Many thanks for your reply. I suffer with right sided weakness in my arm and leg, poor coordination and dizziness and slurred speech. I have also had some difficulty swollowing and sometimes struggle to talk but i don't know whether this is a symptom of my carvanoma or not as no one else has spoke about these symptoms

[Vixanimal in reply to Maggier2]

I also have brainstem cav (pons) after my bleed i have right sided weakness, i struggled with speech memory, vestibular issues (dizzyness) balance. All the same as you have experienced. Im now nearly 2 years post stroke my cav is too deep to remove and im not a candidate for gamma knife. So i have to watch and wait. Its taken a while to come to terms with things but I'm getting there. Join the cauk thay have been a great source of information.

[Maggier2]

Thanks so much for responding. I am so sorry that you are experiencing these symptoms and would not wish this on anyone. However, and some what selfishly, it is some comfort for me that I am not on my own with this and how you are coping with it.

[CAUKcommunity16 Partner in reply to Maggier2]

This is not selfish Maggier2 - it is certainly comforting to know you are not alone - and I am glad you are finding help in other peoples' stories. I think your symptoms all do sound like those that could be related to your cavernoma, they certainly do not sound unfamiliar. Are you under the care of any rehabilitation/physiotherapy/neuropsychology? Hope you are doing ok this week.

[Maggier2 in reply to CAUKcommunity16]

No, I have not seen anyone. The 2nd MRI has just been done and I'm waiting for something?? Maybe my symptoms are not considered severe enough for any of those interventions and they have improved over the months since the bleed

[lilycat647]

my cavernomas are in the spine and brain (they didn't say where in the brain)

[Maggier2]

So sorry to hear that.

[lilycat647]

Hello, the doc told me that I have a cavernoma in my brain but just said "don't worry, you'll be fine" he didn't tell me where in the brain it was. I have another one on my spine which was found over 20 years ago. Every Cavernoma is different. Take care.

[Maggier2]

Ate you having symptoms currently I have a brain stem cav but ( touch wood) my symptoms after six months have really improved and I am now preparing to go back to work

[Wilkofc in reply to Maggier2]

Your symptoms can just go away?? My daughter is now hardly able to walk she s so weak. Especially on her right side. We took her to ER last Friday because she was lethargic, didn’t know where she was, loss of appetite and could hardly walk. Ended up after all night at ER they released her. All vitals fine. Dr at the ER couldn’t tell me at the time if my daughter’s cavernoma was larger or if she had a bleed. He had nothing to compare it to!!

She was little better next two days, then today not good again!!! What is that about!! Are there good days and bad with this? Is that normal ?? They are talking about doing a spinal tap to see if any relief. And then if not, surgery😱😱😱

[Shanner927]

My son also was just diagnosed with Cavernoma of the pons , yesterday officially. He was referred to a neurosurgeon to further evaluate. Hang in there , sounds like there is a whole community in the same boat with very little information on this condition for the amount of people with this conditon.

[Shanner927]

Also meant to say, I hope you get the answers you need and that your Cav is stable. It is nice to know that you are not alone. Please ask questions to your neurologist and if you would decide on surgery, find the best possible surgeon who has been doing many of these. I wish you well. My son's measured 2.5 cm by 2.7 cm. and has now shrunk since his brain hemorrhage to 19 x 9 mm. I send my prayers to you and all with this condition.