Newly diagnosed, and in need of suggestions.

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Newly diagnosed, and in need of suggestions.

Postby NicoleM » Sun Apr 22, 2018 10:16 pm

Hello everyone, this is my first time posting within a forum like this, so I apologize in advance for any formatting errors.
I was very recently diagnosed with a cavernous angioma and associated venous angioma, in my left frontal lobe, and it measures over a centimeter in size
I have experienced several symptoms for the past year, which have impacted my life greatly, the first strand of symptoms started about a year ago, lasted strongly for around six months, and then lessened in their level of severity. This was until about a month ago, when my symptoms began to become more severe and new symptoms started popping up. My symptoms include; tremors, weakness, constant headache with sharp pains, doubled, blurred, and spotted vision, vision that "locks" in place for 20-30 seconds, nausea, jolts of pain throughout my body that I would describe as feeling like shocks, slight difficulty with speech and finding words, and some episodes where I feel extremely agitated. Some of the more recent symptoms; (vision issues, jolts of pain, constant headache with sharp pains that come and go) have only been present for the past few weeks and have progressively worsened, (my diagnosis was a week and a half ago). I'm also having trouble telling my left from right for some reason.

I have been a type one diabetic since I was 6, (I am now 18), and doctors always disregarded my symptoms due to my diabetes, so having a diagnosis finally that isn't blamed on my diabetes is a bit of a relief. I went and saw a neurosurgeon and they basically advised me that surgery would be risky unless the angioma grows or heavily bleeds, that I should seek a second opinion, and that they couldn't tell me if all my symptoms are associated or something else is going on with my brain. Reading through posts on this forum has made me aware that the neurosurgeon's response seemed like a common occurrence for someone who maybe doesn't know a lot about what I have, and a lot of the symptoms I read of other people experiencing are similar to what I am experiencing too or find difficult to explain in words.

Does anyone have any recommendations for what I should do/ who I should see? If surgery is a possibility, and would alleviate my symptoms, I would love to find someone who could do it. I live near Chicago but I'm more than willing to travel. Another thing, for the past six months I have experienced severe pain and pressure in my spine and lower back, but I've never been able to get a doctor to do any type of scan on my spine and back. The pressure I feel has progressively gotten worse and worse. I've read a bit about spinal angiomas and I am wondering if this is a possibility, does anyone have any experience with them, or am I at more of a risk for having one in my spine since I have one in my brain?
NicoleM
 
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Joined: Sun Apr 22, 2018 8:27 pm

Re: Newly diagnosed, and in need of suggestions.

Postby Elizabeth » Wed Apr 25, 2018 4:39 am

Welcome,

I'm sorry you are having problems and the doctor run around is sadly normal. Mist of these doctors have limited understanding of cavernous angiomas. Lucky you, in Chicago....one of the best doctors is in Chicago... Go see him. He will help you. Dr. Awad.
Best wishes!
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

Re: Newly diagnosed, and in need of suggestions.

Postby Michelle2000 » Fri May 04, 2018 3:55 am

Welcome Nicole,

I'm sorry you have this diagnosis, but glad you can now get some answers.

Be sure to share your spinal symptoms with Dr. Awad or whichever NS you see. You should get a spinal MRI. Mayo Clinic is also an Angioma Alliance Center of Excellence, and my family has received excellent care there.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
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