Hi everyone
Emma had an EMG and an MRI this week. The results were mixed.
I was wondering what experiences other parents have had with respect to the accuracy of these tests. I've heard from TCH that the EMG results can be misleading.
I'm most concerned with the MRI results at this point because they were less than favourable. I'm so worried that they will prove to be right, and that we're looking at some serious damage.
I can tell you about my personal results with an MRI - I had a knee MRI where the report said one thing and then when they went in and did surgery - something totally different was inside.
Maia had one MRI - it said "left shoulder girdle atrophy." It didn't show her dislocation. The CT scan report said "Posterior Dislocation."
What does that mean? Well I think sometimes the tests are not that accurate. And maybe it's not the test but the person reading them? If you don't like what the report is saying then maybe you can send the actual scans to your doc and have them read by their radiologists? If I did this, I wouldn't send the reports, so the new radiologist would make his/her own assessment without being swayed by someone else.
Good advice...the doctor says he looked at the MRI film and the radiologists report, but I'm not sure how much faith I have in the information I was given. I purchased a copy of the film from the hospital, and I will probably get another opinion.
This is so stressful!! I'm sure you can relate. It would be so much easier if we could rely on test results!
Matthew's MRI results were reversed. It showed possible avulsion on C7&8 and that C5&6 were fine. When he got movement back it proved the results wrong and when he had surgery it definately proved that it was wrong.
Cindy
Dr. Nath told me a long time ago (couple of years I guess) that they did a little study on MRI's - to assess babies nerve damage... said that out of 100 only 5 matched in surgery what they found on MRI.
and that was a good point about the person doing the test...
when Maia had her MRI they said she was breathing too heavily and they had to run it twice and they said it was foggy because of that.
Our EMG report wasn't accurate. It did not indicate the severity of Elizabeth's injuries. We cancelled the MRI once we heard that the accuracy (5 of 100,like francine mentioned) was questionable. I measured Elizabeth's severity, before surgery, by her lack of function. It was very obvious to me. It wasn't until they did the EMG during surgery at TCH that the true extent of her damage was evident. BTW, Elizabeth is doing really well and has recovered more function than I ever thought possible.
I really appreciate that people are willing to share their experiences. We're still pretty new at dealing with this situation, and are learning as we go. It helps a lot to hear what other parents and children have gone through.
We were told that Gabrielle's MRI and EMG were misleading as well. TCH hold us they could not tell anything for sure from these test. They had to see how much damage was there after opening her for the nerve graft. The EMG I have been told is to hard to get a correct reading on a small child.
Hi, Sarah. Sounds like you all had a tough week. You already got some great info. I'll add our experiences with our daughter, Nicole, who's almost 3 y.o. now.
EMG -- we never had a surface EMG done on Nicole b/c based on physical evaluations, we decided upon surgery and the drs. did an intra-operative EMG at that time -- which is much more accurate and wouldn't hurt Nicole.
MRI -- Nicole had an MRI done at about 3 months old. It gave us false hope and set us behind on the surgical timetable. It did not show the 2 avulsions that the intra-op EMG indicated and it doesn't show the tears, stretches or neuromas. I have heard that at such a young age, that it's hard to get a clear reading of the tiny nerves. Plus, I know that in Nicole's case, they didn't want to use too much anesthesia at such a young age and she did move a little during the scan, which makes the test inaccurate. I hate to tell you this, but I have heard that it's much more likely that an MRI will miss something than to indicate avulsions that don't exist. However, that's not to say it doesn't happen that way b/c I've heard of the results being inaccurate in both directions (just that an inaccurate good reading is more likely).
Nicole also had an MRI done at 22 months old -- to look at her shoulder and it did show a subluxation / partial dislocation to be present -- which is what the dr. expected it would find. I feel that one of the reasons we got more accurate result with the 2nd MRI is b/c Nicole was much older and they were looking at the shoulder joint, not the tiny nerve roots. Plus, Nicole had more sedation when she was older, of course, b/c they didn't want to give her very much as a 3-month old infant. We also had the 2 scans done at different hospitals -- with different machines and different technicians, which could've contributed as well.
So, based on our knowledge and experience and IMO, I think the MRI can be a good tool for assessing the shoulder when the child is a little older, but not the best test for assessing nerve damage in an infant.
I have also heard of CT Scans being done to assess the shoulder joint. Different drs have varying philosophies on that test as well. I know that Dr. Waters usually recommends the MRI up to age 5 and the CT Scan for 5 y.o.+
Has Emma already had a physical exam by a BP Specialist who does surgery? How old is she?
