I am preparing for my NS apointment next Friday by gathering MRI scans and reports when I remembered several years ago I had an MRI when I was out of town. I couldn’t remember why I had it just that it was terrifying but everything was said to be fine by the nurse that called me. I tracked down the hospital I had it at and asked for a copy of the scans and report. Turns out it was 8 years ago and they don’t keep the scans for that long but they did send me the report. The report is below:
Reason for exam: ride side facial numbness
The cerebellar tonsils are noted to be low lying but not beyond normal limits. Inferior tip of the cerebellar tonsils reside about 11mm below the foremen magnum.
mild cerebellar tonsilar ectopic which would be of no clinical significance.
Are you freaking kidding me?? They knew this 8 years ago and never told me? Do you know how many tests and doctors visits, sick days and well just days of my life I could have actually lived rather than being sick? I’m so furious they never told me nor did they find this of any significance. Are doctors and radiologists really this ignorant to the significance of CM? I am so thankful I have a good doctor now who told me about the CM. I am sooooo angry, we pay these people thousands of dollars, for what? If we don’t have cancer, diabetes or some other well known disease they don’t even take a second to learn more about it? I feel like the past 10 years have been wasted on being sick!! I wish there was a way to hold these people accountable!
Sorry just my rant but it makes me wonder how many others are being misdiagnosed or not diagnosed at all!!!
Uneducated physicians!!!!!! I had literally dozens of MRI's from when I was 20yrs old to 30 yrs old before a radiologist caught my 18mm herniation! My NS and I went back through all the MRI's from 10 years and it was there the entire time (duh!). When I was first diagnosed I thought of all the ER visits and 10+ years of pain that I endured, thinking I was going crazy...then I just had to get past it and decided that was the past and I couldn't dwell on it...just move forward! It sucks, huh? Pretty crazy how things like this don't get caught!
At least now you know and can get treatment. Not that makes your feel any better right now....you have every right to be frustrated and angry! Ridiculous, I agree!
Vent anytime you need!!!
Hang in there and let us know how your appointment goes!!!
it is pretty crazy how things are missed, or under-diagnosed, honestly though i think a lot of it is from uneducated radiologists especially if they are older ones, and over educated radiologists -newer ones, who tend to be arrogant and believe they know better then ANY person even other specializing doctors.....
Now to you I say I know how upsetting it is to realize that you "might" have been able to be diagnosed years ago but because of this person you were not. I understand how you feel. But I ask you to put away the anger of the past and change that energy to the future and into healing and moving forward, dont dwell on the past-look towards the future.
Hey you can also look at it this way- there is a reason you weren't diagnosed then like maybe the lack of knowledge by ALL..and now there are more doctors/specialists out there who know what they are doing.. :)
I think it would be great to have educational pamphlets to distribute to PCP, radiologist and even some NS!! If nothing else to educate and open their minds to the possibility this disease is more significant than once thought and it’s finding is not nessessarily incidental.
It is funny that you posted that. I was just thnking the same thing this morning. I wonder if ASAP has pamphlets that can be preinted out. I am going to check on that. It would be great if we could take our pamphlets to our doctors and let them know that WE KNOW OUR OWN BODIES!!! I have an appt with a new NL in April and have compiled a bunch of info to hand him. He probably isn't going to like me too much, but dammit...this is MY LIFE!!!!
Krissy Ann said:
I think it would be great to have educational pamphlets to distribute to PCP, radiologist and even some NS!! If nothing else to educate and open their minds to the possibility this disease is more significant than once thought and it's finding is not nessessarily incidental.
It took me almost 5 years to be diagnosed and I had an MRI 3 years before I was diagnosed and they missed it. I was pregnant with my second child and they did an MRI at 37 weeks because I was having awful pressure symptoms and they wanted to make sure I wasn't in danger of having a stroke during childbirth. That's all they looked for and ignored/missed my 14mm herniation.
There is a great little book to bring to doctors or show family members it's sold at Amazon it's ...."The Chiari Book" by John Oro It's great because it has a nearly complete symptom list but also a third of it is reference information on studies and medical papers on chiari. So a doctor that's interested can look up the information.
Agree! I now have a copy of all my films reports and any doctor notes relevant. Just wish I had thought of that 8 years ago! Although maybe it was just meant to be, let’s face 8 years ago Doctors knew even less than they do now!
Abby said:
It is always helpful for future reference to have the old MRI’s to compare with the new ones. Most of our doctors and the radiologist do not see many Chiari patients. They try to play it down, and when we are crying out in agony then they decide it is time for treatment. They say, “you had it all your life, and it didn’t bother you.” Yes, it did and does now.
I always ask for copies of my MRI’s and CT’s, because, I want to know exactly what was found for myself and for future comparisons.
Wendy, I have THE CHIARI BOOK also, I am a big reader of Dr. Oro’s publications. He is one fine doctor when it comes to knowing about Chiari.
One of our members pointed out that I have Retroflexed Odontoid, in my MRI, that the radiologist did not record either, and it is in plan sight. Neither did my neurologist recognize it, but you can bet I will be asking when I go in May for my 6 months check up. Thanks Bill.
We all have so much in common (chiari) and by having to be our own advocate and our own voice. We learn so much from on another and that is why this site such a valuable resource for us.
You would be surprised to know how long the doctors knew about your chiari, but failed to tell you. Play it down, sweep it under the rug, sort of thing. Maybe it is because they don’t really know what to do for us, Michael says it best, GET A GOOD CHIARI DOCTOR.