My recent MRI

Discussions of issues related to living with cavernous angiomas

My recent MRI

Postby PattiG » Sat Feb 10, 2018 8:02 pm

After several months of experiencing intermittent dizziness, along w/ a feeling I might pass out (but didn't), I requested an MRI through my neuro. Thankfully the scan showed no blatant changes, or evidence of a new bleed. However it did show a very small bleed in my right frontal lobe from a CM I believe has previously shown minimal activity in prior scans. While I don't feel scared, I feel sickened, sad and anxious from this reoccurring nightmare of 30 yrs. In the meantime, I await discussing my symptoms w/ my neuro and also, awaiting MRI review and the opinion from my neurosurgeon, while knowing there may be no answers.

In the past as recommended, I faithfully had annual MRI's to check for any changes with multiple CMs. Within the past few years, I made a personal choice to not have annual scans. After having four bleeds from multiple CMs requiring surgeries, my poor brain has been through too much and the scans show it. :( Seeing my scans, or reading MRI reports makes me feel sick to my stomach and is like viewing my own personal horror show. This recent MRI was a reminder why I chose to discontinue annual MRI's.

Back in the day when first diagnosed in 1987 w/ multiples and having my first surgery in 1988, I felt blessed to have survived, feeling the scary parts were behind me, not comprehending this was a lifetime disorder, requiring self-advocacy, routine neuro follow-ups, decisions and many, many emotional, physical and life-altering ups and downs...

Thanks for listening. :)

Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
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Re: My recent MRI

Postby Elizabeth » Sun Feb 11, 2018 12:32 am

I just typed you a long response and it disappeared! Ugh.. I'm so sorry you are at this crossroads again. I will say more later.
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: My recent MRI

Postby Elizabeth » Mon Feb 12, 2018 5:34 am

Oh no Patti! I'm so sorry. I'm not doing "routine" MRIs anymore either because they cause me too much anxiety for probably no reason since I'm not having another surgery unless its absolutely necessary. The MRIs tend to leave me with more questions than answers, so as long as I feel OK...I'm good with skipping for now. But for you, being newly symptomatic...obviously you know when its time to get back on the rollercoaster. I'm sure with all of your surgeries and multiples, your images create extra anxiety, disappointment, and the sadness that comes with the harsh reality before your eyes. You are my hero as you exhibit such strength and grace through tremendous struggles. You are amazing and I wish you had a cure...now!!! Enough is enough. Please know we are cheering you on sending you love..hoping this new bump in the road is either an old bleed or a small ooze that doesn't require any "decision making". Hoping the best for you always!
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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Re: My recent MRI

Postby PattiG » Mon Feb 12, 2018 2:00 pm

Oh thank you!, Elizabeth!

You always have the right words to lift my spirits. <3
I think this new "bump in the road" is just a temporary scare and ugly 'reminder', but one that will resolve itself w/ no big decision making. Knowing it may be oozing I can handle.
I too don't think I could ever go through another surgery unless it was critical.

Best wishes always and hugs,

Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
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Posts: 1089
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: My recent MRI

Postby Michelle2000 » Mon Feb 12, 2018 8:14 pm

Patti,

I'm sorry you are once again confronting ccm in a new way. Your daily struggles should be enough! You have certainly earned the right and wisdom to make the choices that are best for you. Heck, you've taught the doctors more than most of them even know.

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)
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Re: My recent MRI

Postby PattiG » Wed Feb 14, 2018 9:48 pm

Thank you, Michelle.

Yes, one would think enough is enough, but then life might get boring? lol ;)
With the assumption it's probably seeping, I'm feeling ok about it.
As for intermittent dizziness, I'm relieved that's lessened and am guessing there probably won't be an answer as to what caused this.

Best wishes,

Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
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Posts: 1089
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: My recent MRI

Postby oleblue » Tue Feb 27, 2018 1:23 pm

Good Morning,

Spot on. Dave has taken that approach as well. We have our emergency excape plan, other then that one day at a time. Hate this disease, it takes and takes from us.

Please take care and sending you sunshine and flowers always.

Dave & Barb
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Re: My recent MRI

Postby PattiG » Fri Mar 02, 2018 4:48 pm

Good news! from my NS.
"The mri does show some new blood product in the right frontal lesion but it has not changed in size compared with the last couple of years." He recommends a follow-up MRI in 1 year. I can cope w/ that. :)
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
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Posts: 1089
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: My recent MRI

Postby Elizabeth » Sat Mar 03, 2018 6:39 am

Great news!!! Hoping next years is unchanged and without more symptoms!!
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
Moderator
 
Posts: 1638
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


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