New member with pontine cavernoma

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New member with pontine cavernoma

Postby Wanmokh » Wed Aug 23, 2017 3:26 am

Hi folks. It feels so refreshing and liberating to finally find some avenue for sharing on a topic which I have for most part made me felt so isolated due to lack of support and understanding from people around my social circle.

I am 40 and first had symptoms most likely due to bleeding from my later diagnosed pontine cavernoma 10 years ago. I was standing in line for buffet spread at lunch when suddenly everything started spinning around and I lost my balance followed by nausea and extreme lethargy. My friends brought me home and I slept for the next 10 hours and woke up feeling almost normal.

The second episode was 7 years later and this time it was less dramatic with intermittent giddiness and numbness over my left cheek over almost 2 weeks. I went for medical assessment before a brain mri confirmed a pontine cavernoma with evidence of intralesional and extralesional bleed. I took medical leave for 2 weeks and life went back to normal after that.

It has been 3 years since my diagnostic mri brain and my neurosurgeon says I won't really need another one unless the symptoms return.

Personally for most part I'm more self conscious of the vague symptoms that I have that may be attributable to the cavernoma nowadays. It's now mostly vague non specific headache and easy fatigability especially after a long and hard day at work.

Looking forward to hearing from the other members and share more information especially related to planning your life around this condition. Ie. Should I hold back on deep sea diving n sky diving etc for fear of bleeding and so on.

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Joined: Wed Aug 23, 2017 3:01 am

Re: New member with pontine cavernoma

Postby Elizabeth » Thu Aug 24, 2017 3:04 pm


I'm sorry you are affected as well, but I'm glad you found us. Your vague complaints are very common and typical for "us". Headaches can be a real problem for a lot of people especially with brainstem cms. Fatigue tends to go with all types of " brain injuries". Fatigue is my biggest remaining deficit and it impacts me daily. I've tried just about everything, but naps and lots of sleep are the only real remedy for me. Even though you are not new to this dx, you might want to check out the newly dx section on the main site. General recommendations are: NO blood thinners of any type, NO scuba diving, and NO roller coasters. I'm not sure but I would probably skip the sky diving too. I'm not sure if that would be worth the risk for me personally. You will have to decide for yourself what kind of risks you want to take.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery.
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Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: New member with pontine cavernoma

Postby plopez6 » Mon Sep 04, 2017 6:15 pm

Sorry you're going through this. Most neurosurgeons won't operate unless you are actively bleeding. It also might be in a difficult to operate area. Best of luck.
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Joined: Mon Oct 15, 2012 4:48 am

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