Diagnosed and full of questions

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Diagnosed and full of questions

Postby soccerlover » Wed Dec 06, 2017 3:36 am

In March, I got extreme pressure in my head on the left side. This resulted in a major panic attack and a trip to the ER. I was extremely dizzy and they told me I had vertigo and blood pressure was high. Saw my prime care doctor who put me on blood pressure pills. I tried allergy meds and things gradually improved over the summer. In August, however, I started getting bouts of extreme dizziness again (Dizziness never fully left, just was more tolerable). I then saw an ENT. Vertigo was ruled out and was diagnosed with vestibular migraines. I was sent for an MRI to make sure there were no other issues.
The report: There is a 7 mm rounded focus of increased T2 signal centrally with a hypointense rim centered at the left basal ganglia. There is no surrounding edema or mass effect. There is
enhancement of vessels extending from the lesion posteriorly and coalescing into a dominant vein that drains superiorly to the left lateral ventricle. The findings are consistent with a cavernous malformation with an associated developmental venous anomaly.
I remembered while in the MRI machine that I had an MRI 9 years ago. I found those results and at the time, the report read: a 4.8mm hyperintense T2 with well-defined hypointense rim seen measuring 5.2mm in left basal ganglia

I was referred to neurologist and am anxiously awaiting the appointment.

Has anyone had a similar diagnosis? What does the change in size mean?

I did read to avoid aspirin, blood thinners and ibuprofen. I fly almost every week for my work. Is this something I should stop?

Could this be causing my 'dizziness' which I explain best as my eyes just can't focus or my eyeglass prescription isn't right?

Thanks!
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Re: Diagnosed and full of questions

Postby Elizabeth » Wed Dec 06, 2017 6:44 am

Welcome,

Sorry you've joined our "club" but I'm glad you found us. I had an angioma in a similar place but mine was on the right. Its a deep location, so hopefully yours will behave itself and you won't need surgery...Mine did not behave bleeding and growing all the time, so it had to go. Yes, the dizziness...ugh! I had that really bad. It was one of my first symptoms that brought me to the doctor. I felt like I was drunk all the time..it was a bad feeling...dizzy spacey, out of it. I was actually having a bunch a seizures too, but I didn't know what they were. Partial seizures..so I wouldn't lose consciousness but I was extra dizzy with a sort of buzzing feeling sometimes. Weird burning smells, bad tastes...it was strange. My eyes were all messed up too. I went to the eye doctor and I could read the eye chart fine, but everything moving was blurry so I couldn't drive. As mine continued to billed and grow over the year and a half we followed it, it doubled in size from about 2.2 cm to about 4 cm. Your increasing size could be growing or bleeding or maybe just a fluctuation in measuring. Consulting with some experts might help you feel better, so they can answer your questions. Most doctors know little to nothing about cms.

Things to avoid: No blood thinners of any type(no aspirin, no advil, no aleve, etc), no roller coasters and no scuba diving. Flying in a pressurized cabin is fine.
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
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Re: Diagnosed and full of questions

Postby Connie Lee » Thu Dec 07, 2017 5:28 am

Where are you being seen? This can make a difference in the quality of the advice you receive.

There is about a 2 mm possibility of a measurement error because of how MRIs are sliced, so the difference in size may not mean a lot. That said, it could also be a real growth in the lesion, but the lesion would still be considered relatively small.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Re: Diagnosed and full of questions

Postby soccerlover » Thu Dec 07, 2017 12:39 pm

Thanks for all the info!
I live in Pittsburgh, PA and was referred to a neurologist group that supposedly works with 'abnormal' bloodflow.

My appointment is Monday and am I working on my list of questions.
If you have any advice on questions to ask, please let me know.

Appreciate the support!
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Re: Diagnosed and full of questions

Postby Elizabeth » Fri Dec 08, 2017 6:30 am

I'm not familiar with any specific cavernous angioma doctors in Pittsburgh, but there is at least one member near you..I think. There was a lady Heather several years ago that had surgery on her cm. You might want to do a search here for her or Pittsburgh to see if anything helpful comes up. I think heather was fairly active with as for awhile...I'm not sure if she still is but i think she organized a "city day" to recognize cavernous angiomas some years back. Also, if you can get to Chicago, one of the best experts is there...Dr. Awad. If you can see him, I would try. As far as questions, look on the main site and read all you can.there is a page with questions...it might be helpful.

http://www.angiomaalliance.org/pages.aspx?content=60
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: Diagnosed and full of questions

Postby Michelle2000 » Wed Dec 13, 2017 5:14 am

soccerlover,

How did your appointment go?

Best wishes,

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