New Member, New Diagnosis

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New Member, New Diagnosis

Postby SJK139 » Wed May 17, 2017 3:22 pm

Hello All,
Two weeks ago on an uneventful Tuesday I went to bed in perfectly good health. My husband woke up to find me having a seizure 3 hours later. We rushed to the emergency department and it set off a whirlwind of a week. When my MRI was completed the radiology tech had a terrified look on her face and I knew it wasn't good news. I was told I had a 2cm brain lesion in my right posterior parietal lobe. I'm a 28 year old resident physician in anesthesiology and my understanding of medicine made things quite frightening. A new onset seizure coupled with a brain lesion can often mean malignancy. As odd as it sounds it was quite a relief to hear that it was a cavernoma. While not the best news in the world I was simply overjoyed that it was benign.

Thankfully all of my other testing including blood work & EEG has returned normal. I was prescribed Keppra to prevent more seizures. I have an MRA next week followed by an appointment with a neurosurgeon. I am interested to hear what experiences people have had with surgery. Since my cavernoma is largely asymptomatic I am leaning against it.
Sarah Jane, MD
2cm cavernoma in right posterior parietal lobe. Diagnosed at 28 years old following seizure. Work as resident physician in anesthesiology.
SJK139
 
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Re: New Member, New Diagnosis

Postby Elizabeth » Thu May 18, 2017 12:43 am

Welcome,
I too was relieved when I was told that my brain "lesion" was just a cavernous angioma....and not melanoma as some others had suggested. Guessing you already know the basics, but if not...check out the newly dx section on the main site. There's lots of good general information there. General recommendations are: NO blood thinners of any type(advil, aleve, aspirin, etc), NO rollercoasters, and NO scuba diving. Hopefully you will have good seizure control. Multiple failed seizure meds would obviously be a consideration for surgery. Risk benefit is the name of the game for surgery. Hopefully yours will behave and not bleed, you get good seizure control and then surgery is less likely to be needed. Surgery stories are all over these threads. My surgery story is laid out in my blog. Mine was a high risk, deep, difficult surgery, complicated by a stroke. I'm lucky though, my recovery was excellent and my aggressive cm is gone. There are many more stories from super easy to very hard. Location and the doctors ability are two very important factors among many others affecting surgical outcomes. Ask any questions, we will try to help!
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. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Location: Los Angeles


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