Time for my baby to get an MRI....gulp

Discussions of issues related to living with cavernous angiomas

Time for my baby to get an MRI....gulp

Postby Elizabeth » Thu Feb 02, 2017 5:26 am

So, its finally that time that we have decided its time for my baby....now 3 years old to get an MRI. While I know all about how miserable this can be for myself, I now have to parent through this with my child. : ( My baby was born with nystagmus and we have opted not to do an MRI for "just a dx". But at this point he's 3 years old and still has a very significant nystagmus for no known reason so after many expert exams....optho, neuro, etc....they made it clear we should try to figure it out. I'm hoping his MRI is clear... but we won't know til its done...and even its it clear.....which I'm hoping.....then what's causing the nystagmus??? Oh the mysterious brain???
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: Time for my baby to get an MRI....gulp

Postby Kenzielee84 » Fri Feb 03, 2017 1:06 am

Elizabeth, sorry to hear this... Hope your little one does alright.
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Re: Time for my baby to get an MRI....gulp

Postby Elizabeth » Fri Feb 03, 2017 6:56 am

Thank you. I feel like I should be a calm expert with this stuff already, but when the ped told me yesterday she thought it was worth doing the MRI at this point....I just about got sick...
My heart always goes out to the parents here..every time I read their posts. It was hard being the patient but its even more difficult being the parent. Hoping it all goes well and his MRI is clear...then we'll just be left with the nystagmus, which has gradually improved over time.
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: Time for my baby to get an MRI....gulp

Postby Halojo » Wed Feb 15, 2017 7:52 am

Hi Elizabeth, i just saw this so thought I must reply to try and give you a bit of comfort seeing as you do that for so many others.

I think it's way worse waiting for the results than it is actually receiving them. We waited 13 months from strongly suspecting it was hereditary to my 5 year old getting his MRI (genetics done first, 5 year old has it, 3 year old doesn't). And it was so hard to wait, but once we knew it was a relief ,(he has 2 tiny ones, ,1-2mm) because we knew where they were, what to look out for, what to avoid (though in all honesty he lives his life as normal except with vitamin d and without ibuprofen!)

There is still a high chance that there is no correlation - but if there is be comforted in that you have already done the thousands of hours of research. I can't imagine how scary it would be knowing a child has this and having no clue what it was.

And if you have any questions on the MRI and what to expect please let me know, I'm more than happy to share my our experience through the eyes of a mother xxx
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Re: Time for my baby to get an MRI....gulp

Postby PattiG » Thu Feb 16, 2017 4:40 pm

Elizabeth,

Of all people, I'm so sorry you, your baby and family are going through this.
Holding good thoughts for his MRI to be ok.
Pls keep us updated when possible.

Hugs & well wishes to you,
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
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Re: Time for my baby to get an MRI....gulp

Postby Michelle2000 » Thu Feb 16, 2017 5:14 pm

Elizabeth,

I'm sorry you and your son have to do this. I'm sure you know this, but just remember to let all your anxieties out far away from your son. Treat it matter-of-factly and so will he. We're here to listen when you need to freak out!

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: Time for my baby to get an MRI....gulp

Postby Elizabeth » Thu Feb 16, 2017 6:12 pm

Thank you everyone! It was much easier to be the patient than be the parent.
We're back to waiting again...see where it leads us. We had the f/u with his neurologist yesterday, and I thought for sure she would order an MRI because when we were there 3 months ago she said he should have one, but this time she referred him to another eye doctor instead. She said that some new research showed increasing risks of MRI in small children. She wasn't sure the risk is "worth it" since he's only presenting with slightly improving nystagmus and no other symptoms/deficits. She said the next eye doctor will "know whether its worth the risk of MRI or not." Typical....nobody has any answers...this is doctor #4 already.. Here we go.
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: Time for my baby to get an MRI....gulp

Postby Michelle2000 » Mon Feb 27, 2017 4:21 am

Grrr!

I hope the next doctor is your last.

I'd be curious to learn more about the MRI research.

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: Time for my baby to get an MRI....gulp

Postby adelle » Wed Mar 29, 2017 8:09 pm

Elizabeth, I am hear after a long time and just saw your message. Not fair! I am thinking of you and hope all will go well with your little one. Bless!
One brainstem CA removed by Dr. Spetzler on 9/28/10. 2 CA's remain on the right frontal lobe but have not caused any problems that I know of.
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Re: Time for my baby to get an MRI....gulp

Postby Elizabeth » Wed Mar 29, 2017 11:34 pm

Aww, thanks Adelle and Michelle.
I hope you are well Adelle!
Michelle, next time I go to the neuro, I'll ask what specific research she's referring to and pass it along. I'm guessing it mostly has to do with risks of general anesthesia, but I did read some reports about the risk of gadolinium before she mentioned anything...so I'm not sure what the specific risk was she was cautionary of. I sorta prefer less is more anyways, unless were missing something treatable....which we won't know unless we do an MRI... Such a catch 22. If it was a cavernous angioma, we're gonna watch n wait anyways cuz his symptoms are so manageable and I never give either of my kids blood thinners anyways cuz I'm paranoid, but if was something scary and treatable I would be very upset we didn't do an MRI. Chances are it's nothing serious hopefully since he seems to only have nystagmus and nothing else. If anything its improving, so for now we wait.
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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