Newly diagnosed with a (probably) inoperable brain CCM

Types of Avm's CCMs and DVAs
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Hi everyone

I’ve been lurking for a little while now, and thought I really should post and share my story.

Had random twitches/seizures in one hand for a few years, and (what we now know to be) nighttime seizures for quite some time.

The GP has been ok, but clearly was out of their depth - initially diagnosing tight muscles; then essential tremor. I eventually managed to see a neurologist who described the symptoms as ‘curious’ and sent me for an MRI and an EEG.

The MRI was a couple of weeks ago; the EEG is booked for next week.

In the meantime, the neurologist rang to tell me that I have an AVM and referred me to a neurosurgeon to look at options. I spoke with the neurosurgeon last Friday: after reviewing my scan, he thinks it’s a CCM/Cavernoma.

I’m just waiting now for the results of a multi disciplinary team meeting to confirm which it is. I’m expecting a CCM though.

Unfortunately, whilst it’s right on the surface of the brain, it’s location was described by the neurosurgeon as ‘unattractive’ as it’s close to / tangled with some motor function areas. It’s about 4cm x 2.5cm, and triangular.

It sounds as though gamma knife isn’t likely - it sounds like it’s rather controversial in the world of neurology for Cavernoma, and if it’s Cavernoma, then there’s no way to embolise it.

I think that’s everything that’s happened over the last 2 weeks or so…

It’s exhausting having this - feels like it’s dominating every waking moment. I’m very lucky to have an amazing wife who has been incredible throughout. I think I just need to know which of CCM/AVM it is so that I can start to mentally prepare for what might be to come.

I know this is predominantly for AVM, but is there anyone else active who has a Cavernoma?

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Hey User_82,
My name is Merl from the modsupport team here on Ben’s Friends.

In very basic terms it seems the CCM is a type of AVM. With a typical AVM there’s a high rate of blood flow, where as with a CCM the blood flow is much less. I can see how and why obtaining a clear diagnosis/treatment plan would be difficult. Often obtaining a diagnosis can be difficult enough without having a rarer type.

To be honest, it sounds to me like you are doing and have done everything to obtain that diagnosis and to have done it all in the last 2 weeks, just WOW. It took me much, much longer to get anything like a true diagnosis, lots of ‘it could be… or it could be…’ but no answers. So, 2weeks WOW. But now, you’ve got to wait for the dr’s and I can tell you that wait can be a torment. Me, I wanted answers and I wanted answers NOW. After diagnosis, I initially was told 'Wait and Watch". My view was ‘I have a timebomb in my head and you’re telling me to wait…???’ My stress went from zero to 1000. I made an appointment for a 2nd opinion. That opinion was to operate and I took the 2nd neuro’s advise.

Now, I have to say here that although I took that 2nd opinion, that was only the start of my neurosurgical journey and since then I’ve required a further 5 further neurosurgeries to ‘try’ and manage it all. I thought ‘operate, fix and everything goes back to normal’ only that hasn’t been the case. So please, do consider all of your options objectively and in full.

Merl from the Modsupport Team

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Just a quick welcome from me, was away for a few days and shockingly enough in an area with no cell or internet coverage to speak of. I agree with Merl in Wow, a few weeks in the medical world seems awesome these days! Take Care, and welcome aboard, great you found us, too bad you had a reason to! If you’ve been lurking, you’ll know we have a ton of varied experiences and an incredible group of folks who share openly and are always willing to help however we can in this virtual world. John.

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Hi both

Thank you for your welcomes. You’re right about the timescale - I’m fortunate to have private medical, and to have found a couple of great specialists.

I’ll update this thread as things progress.

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Evening.

Today was the VEEG. Pretty straightforward - though our hospitals in the UK really aren’t geared up for the hot weather we’re having, and a couple of the electrodes were slipping off with the sweat :nauseated_face:

Still anxiously waiting for a diagnosis either way: My neurosurgeon is on holiday for a week now, though I’ve managed to secure an appointment with the neurologist when the VEEG scan results are ready in just over a week.

Merl - just reread your post. Thanks for your insight - I think my starting point was ‘get this thing out of me’, so interesting to hear it might not be as easy as said!

Thanks

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@User_82

Welcome!

If you do get a CCM diagnosis, we do have a small group of @BrainCCM members.

I’m doing a bit of organising and I’ll see if I can gather some of the more recent CCM stories together into this category. What I’ve found so far is that a good proportion of CCM people report having their CCM in their pons or brainstem or basal ganglia, so as well as having a read round this category, take a look for stories in the Brainstem & Cerebellum category or use the Search magnifying glass. The one caution I’d offer is that we moved platforms in 2016 and it is more likely when you find stories before that date that you’ll not get a reply.

However, I’m hopeful that some of the current CCM members will stop by to say “Hi” and if you get a diagnosis, please let us know.

It’s good that your neurologist’s interest was piqued. I think all of us who have discovered these kinds of things without a stroke are suddenly frightened by the route life is taking but I hope that with time and reading around and the ability to ask us about anything we can help you worry a bit less about it.

Great to have you on board!

Richard

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Dear @User_82

Welcome to the community! As others have said, we go through many emotions once we start learning what an AVM / CCM is. Like you, I found out about my AVM in an incidental checkup, we are lucky about that. Also like you, mine was fairly recent, in May. And again, like yourself I went through all of the information I could gather, spoke with many doctors and started building a plan on how to deal with my diagnosis in about 2 - 3 weeks. I live in Guatemala, where all of the doctors recommended, I go to the States for treatment, and thankfully my insurance provided that opportunity. On June the 1st, we got to see a specialist in Cleveland Clinic, and story short after many labs, exams and appointments I had a craniotomy on June the 7th. My AVM was located in my cerebellum, grade 3. I have been recovering ever since, it is supposed to take 3 months. Most of my issues have been with balance when walking, but every week I have made progress and I am now back home.
I know our stories have similarities and also are different, I believe that everyone’s story and journey can help others with ideas and also it gives us comfort knowing that we are many, worldwide.
I wish you all the best and hope you can get more information from doctors.
Best
Francisco

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Dear User_82,

Hope this note finds you well, albeit with your recent discovery of an abnormality.

This is a very daunting time indeed, not knowing what is happening in one’s brain and whether this is a ticking time bomb or not. I sincerely hope that you have a CCM rather than an AVM. I was originally diagnosed back in 2017 with a CCM and DVA. They are in close proximity of each other, located in the right cerebellum. Unfortunately, due to their close proximity as well as location, surgery is not an option. The only saving grace, is that a CCM is a slow bleeder and thus will not cause a sudden stroke or massive haemorrhage. However, the headaches are rather bothersome, but this is still the better option to take. I am based in SA and there is not overly much research that has been done to date. I do however have a wonderful neurosurgeon monitoring me, which is done on an annual basis due to a previous bleed. Thankfully, thus far, there has not been an additional bleed.

Wishing you strength and positivity in your journey and that your diagnosis is finalised soon in order to know which course of treatment is best. Trusting for guiding specialists to take care of you and provide you the best treatment possible.

Take care,
Debs

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Francisco - that’s an amazing story, and I’m so glad you’re recovering. Small steps I suppose?

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Hi Deb’s, thank you for your message. That’s the key for me right now - to find out which it is. Once I know that I can start to understand the likely progression: what I’m reading online seems to start with people having grand mal seizures or strokes.

I think I’m also hoping for a CCM (well, I’m hoping it was a mistake and there’s nothing there, but that seems unlikely!).

Have your symptoms changed much since you were diagnosed? Have you always had the headaches? I’m trying to get a feel for what I might expect in the future.

Thanks

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Hi User_82,

My symptoms have remained fairly constant. Daily headaches, dizziness is worse on some days, with no particular reason for it. I have just learnt to try cope and continue to make this my new normal, as there is no treatment for my CCM and DVA.

Wishing for the best diagnosis for you and trust that you will be able to receive treatment. Please do keep us posted on your journey.

Take care,
Debs

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Hi everyone

Been a little while since I posted, and thought I should give an update.

In summary, not a great deal…

I’ve had two teams of neurologist and neuroradiographers look at my MRI. One team were convinced it’s CCM; the other are 95% sure, but want to do an angiogram to check.

Whilst I don’t fancy the thought of the angiogram, I think I need to know for sure for my own sanity, so waiting for an appointment to come through - should be at the end of this month.

The neurosurgeon is reluctant to remove it, as it’s in a ‘very, very eloquent’ place - though he did say it’s not an impossible procedure. Interestingly, he said that the most likely downside of the craniotomy would be loss of motion in the arm and hand that’s currently affected.

The neurologist literally shrugged when I asked about lifestyle changes as a result of the CCM. It seems counter intuitive to ignore it and carry on with extreme rollercoasters, take up scuba diving etc etc. His view was that if it’s going to bleed, it will do whatever I do (or don’t do), so stuff it.

I think I’m also still nervously trying to determine what’s likely to happen if this progresses. The neurologist reckons: increased localised seizures and migraines, with an incredibly low risk of stroke.

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