Tuesday, April 30, 2013

Getting My MRI

Today I had my MRI for my myoclonic body jerks. It wasn’t so bad being that I didn’t get claustrophobic. In case your child ever needs one, let me give you the highlights.

First I had to come wearing no metal, which was no big deal other than my wedding ring finger feeling naked. Next I laid on the MRI table and ear plugs were placed into my ears. After that, ear pillows were placed on both sides of my head. Then a plastic mask/hood was placed over my face, connecting to the bed I was on. I could still see through a small window on the mask that was about 3 inches big. Above me was a glass ceiling that looked like blue sky, it was a nice touch I might add. The nurse handed me a devise to squeeze in case of emergency and then I was told to close my eyes.

A moment later I was slid into the MRI machine and then the procedure began.

As the MRI started, I was surrounded by incredibly loud noises, some sounded like noises from a star wars video game and other noises sounded like construction noises or grinding machines. The noises were varied and inconsistent, sometimes moments of silence would occur just before more banging or grinding noises. The first half was 40 minutes long and the biggest challenges was trying to stay perfectly still. Thankfully I only had one body jerk and an itchy nose that was dying to be scratched. After the first 40 minutes were over, the nurse slid me out and injected a dye into my bloodstream for more imaging. Then back into the machine I went for another 15 minutes or so.

After it was over I left feeling like I had attended a loud concert. It was a fairly easy procedure, but if your child has sensory issues it may be too much noise and it may be too difficult to stay still for so long. This was the case with my oldest when he had his MRI in 2010. Read this old blog post to see how we handled that:

http://mysonhas2brains.blogspot.com/2010/09/getting-mri.html

Now comes the waiting... I expect to get good news on Thursday when I see my Neurologist, but I admit it’s a little creepy thinking they might find something. It’s hard not to think of loved ones I’ve lost who also had MRIs and soon after began the fight of their life. But overall, I have a good feeling that everything is going to be just fine. I’m not going to worry about it.


6 comments:

  1. Good luck for Thursday with your neurologist.

    I also had a brain MRI for my ADHD and learning issues. It went well for me too. In my case, it did show brain damage (neurologist was confident that we would find brain damage on the MRI).
    My neurologist hypothesized that my ADHD, sensory issues and learning issues were linked to some brain damage, especially when he read my medical records I brought.
    Unfortunately, I won't have the whole results until the month of July :-(

    For my sensory issues, I got a special ear plug in my hearing ear, the headset and it went well ;-)

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  2. Thanks for sharing Giulia, I hope everything turns up fine in July!

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    1. I don't worry that much about these results.
      The radiologist gave me the very first results, even before they were interpreted, and it helps me to be patient.
      The radiologist was quite clear that the brain damage he found at first sight, and was very obvious, cannot be fixed by surgery. It can only be helped with ritalin.
      Contrary to what you said in the post about the results of your son's MRI, brain damage cannot always be fixed. It sometimes can be fixed, but not always.
      I understand that it was a thought from a long time ago, but I need to say for other readers that brain damage cannot necessarily be fixed.

      My neurologist thought about brain damage and we have it on the MRI.
      Worrying about it won't change the MRI result and won't change the damage.

      If the radiologist found something very serious, don't worry, he would had called right away.
      Here, radiologists have to call the patient if they find something who looks like serious.
      Even, my neurologist would had called me without even waiting if something serious was found.

      If it was a cancer, or a brand new stuff, I would had new symptoms. Currently, there are not any new worrisome symptom, and there never was: pretty much the same story since childhood.
      Neither I, nor my mom, nor my neurologist worry about a cancer or a serious cyst because there is no clue for it.

      And even if the MRI shows other damage than the first most obvious, it does not change the care I currently need.
      It was a MRI I need in order to back up my disability claim and help shut up naysayers. You know, those who say that ADHD does not exist and that everything comes from my "bad parents who need to have surrendered their parental rights", or that "with a grain of willpower and committing to therapy, you wouldn't have ADHD" yada yada ?

      Now, if I need other exams, I will get them.
      If I need a follow-up in neurology, I will have it.
      But I don't worry right now about the "what ifs" because we'll get the answer at the moment it'll happen. Panicking and worrying won't change the end of the story.

      The "what ifs" won't change what I have, won't change the treatment I need and won't change the person I am.

      Of course, my situation is rather different than yours. We get a MRI to try to explain old issues I still have.
      It's not like we suddenly found new worrisome symptoms and have any reason to suspect something potentially fatal, like you.
      So, I can completely conceive that you are very worried.

      Call me crazy, but these first results help me to be patient until July.
      The waiting is not nerve-racking because I can reply to naysayers : "If you know how to heal brain damage, tell it to my neurologist : he'll be very happy to know it !".

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    2. Hi Guilia, as you probably know, the brain is capable of new growth, not in the damaged area, but in the healthy areas around it. There have been studies done with stroke victims where they were (with extensive neural therapy) able to regain significant portions of the functioning they had lost. I hope when you get your results in July that they offer you a treatment plan that will help your brain grow work-arounds for the damaged area.

      Best of luck to both you and Mama Bear!

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    3. Thank you Heather :)

      I already knew the info you gave me. I don't absolutely discount it.
      Sincere thank you for the well wishes.

      The quote about "if you know how to heal brain damage, tell it to my neurologist" is targeted to the naysayers, who say that my ADHD is due to 1) lack of willpower 2) lack of good character from my parents 3) a choice to bring it upon myself because of laziness 4) I am delusional when I say that I have no criminal record (I don't know how to make up a criminal record, btw).
      Now, I have a ready made answer that 1) I don't see how ADHD is linked to lack of willpower, except by parroting pseudo science without thinking 2) they have no rights to insult my parents, even more so when they have not even met them 3) I didn't choose to bring ADHD upon myself 4) they have no evidence that I am delusional when I say that I have no criminal record besides me taking ritalin.
      You know it, but better when said, ritalin is not an evidence of having a criminal record.

      In France, ADHD is a very stigmatized condition, parents are blamed for this condition and adults with this condition are more often than not treated like human garbage by doctors.
      In 2010, I had to see a specialist of infectious disease for a problem with a vaccine. I don't see even a remote connexion with ritalin and ADHD.
      Well, the guy was completely obsessed about my ritalin. That guy started to say that "if I were your father, I would had redone all your education without your incapable mother". For the record, I was 24 years old, so I was already raised and he didn't even meet my parents, mind you !
      Then, he continued by saying that he would not accept that his children, who were 14 and 15 years old, to be so socially unacceptable like I was, and how good father he was by not letting his children being socially unacceptable like I was because they are always well educated.
      After all his bragging about his being a good father, he proceeded to tell how come my GP does not know her job of doctor because she dared to ask him a professional opinion about a vaccine and contraception. At this point, he was screaming and I feared he would throw me some objects.
      Then, he sent me in the waiting room to find a paper, where other patients were waiting. Well, needless to say, I lost it. I was crying like crazy, then I ran into the bathroom because I could not even stand any noise, not being touched and so.
      When the guy came back, he asked : "How responsible I am that she is crying this way ?". I was speechless, and continuing to cry. He was even surprised that I couldn't stand being touched, mind you.
      The actual reason I was coming to see him, the vaccine ? It was the last on his todo list, he was too obsessed about how ritalin "led her to have loose moral and how it is all caused by a family without good character" to care about the vaccine.
      I did not even come back to that specialist at hospital, and I won't even if it means being drop dead.

      My GP was speechless and is still speechless that such a mistreatment happened to me just because I suffer from ADHD and take ritalin.
      She still cannot see how a doctor, who sees me for the first time, who does not know my parents can conclude so quickly that "because I take ritalin, it means that I have loose morality and that my parents are unable raise a child". The reasoning does.not.add.up. Period.
      This reasoning is very flawed, yes. But many doctors believe it here, in France. I am ashamed of being French when I see this.
      This. had. to. stop. NOW !

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    4. I'm so sorry to hear about this experience. The way that specialist treated you is un-professional. (and mean!)

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