Newly Diagnosed-Overwhelmed

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Newly Diagnosed-Overwhelmed

Postby Abbey » Wed Apr 17, 2019 11:32 pm

I am 33 years old. I was just diagnosed with a 7 mm cavernoma on my left temporal lobe. Symptoms have been going on for about 4 weeks starting with major vertigo for 72 hours, followed by a few weeks of headaches and facial numbness. The diagnosis a week ago was a whirlwind. I have since had two MRIs, and an EEG.

I saw both a neurologist and neurosurgeon and am extremely frustrated because the neurosurgeon thinks I'm having seizures. The neurologist thinks it's just migraines. They keep passing the buck back and forth and cannot agree on a plan or even give me options.

In the meantime I have been able to get an appointment coming up at Mayo in 2 weeks which I am hoping helps shed some light on a potential plan.

Currently, though my main concern is that we think the major vertigo episode was a bleed. Is it common to still have daily symptoms since then? And, symptoms that change or come and go?

Thanks to anyone who takes the time to read this. I am just so stressed out because of both the diagnosis and the disjointed medical care.
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Re: Newly Diagnosed-Overwhelmed

Postby Connie Lee » Fri May 03, 2019 10:56 pm

Hi Abbey,
I'm sorry to hear about your diagnosis.

Bleeds are usually pretty evident on MRI when they happen. The Mayo folks should be able to tell you whether you had a bleed and, if so, whether it was recent. Are you going to Mayo in Minnesota or to the one in AZ or FL? The Mayo in Minnesota is a CCM Center of Excellence - you will get the best opinions possible while there.

7 mm is considered a small lesion in the temporal lobe. I will be interested to hear what the experts think.
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
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Connie Lee
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Re: Newly Diagnosed-Overwhelmed

Postby Abbey » Sat May 18, 2019 9:28 pm

I went to Mayo in MN. It was a much better experience than my local neurologist and neurosurgeon.

The consensus was no surgery at this time.

However, they are still trying to determine if my symptoms are migraine or focal seizures. I have now had 2 neurologists confidently say migraine and 2 neurosurgeons say confidently focal seizures.
So, now I go back for a 24 hour EEG to see if they can rule out focal seizures, but my understanding is that this is not necessarily going to give us a for sure answer.

My symptoms that have now subsided for the most part were tingling in my tongue, followed by numbness, difficulty talking. However, if I ate and drank something when my tongue started tingling then it would go away and I would just have a headache.

Now I just have headaches on and off most days.

I feel like I have better direction after my Mayo appointment, but still some concern whether it is seizure or migraine.
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Re: Newly Diagnosed-Overwhelmed

Postby Elizabeth » Mon May 20, 2019 6:14 am

I hope you get answers and feel better. This dx can be so hard with all of the unknowns and all the doctors guessing, but at least it seems at Mayo you will have some of the best doctors guessing... That always helped me to feel better at least knowing I was in good hands.
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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