Watch and Wait > For those in the 'watch and wait' status
Question your MRI comparison results
Ted A:
Hello Everyone:
I posted here a few times over a year ago, and have been on watch-and-wait status since 2005. I would like to share my recent findings so that no one takes anything for granted, particularly the opinion of some medial professionals. Lesson 2 is particularly relevant to those watching and waiting.
Lesson 1. In 2005, two ENTs noted my asymmetric hearing loss and tinnitus, and neither suspected AN. I insisted on an MRI to be sure, which proved up the AN diagnosis. My lesson: See a specialist (otolaryngologist) at a research hospital. I suspect if you are already visiting this discussion forum, the diagnosis has been made, but advise a friend.
Lesson 2. I have had 3 follow-up MRIs since diagnosis in 2005. Each time, the radiologist was asked to compare the results to previous MRI imaging in order to monitor the AN size. Each time, the result came back with “no change in size� (twice at Methodist Hospital in Houston, and once at Mt Elizabeth Hospital in Singapore). During the last visit with my neurosurgeon (Jan 2008), we both agreed that the AN looked larger. He recently sent all 4 MRIs to a radiology specialist (someone he trusted) at the University of Chicago. The results (4 measurements over 3 years) indicated steady growth, and an increase in size of 40%. Initial size was 1.6 cm, now it is 2.2cm. This obviously could have impacted my treatment options and timing. My Lesson: Find a trusted radiologist to monitor the size of your AN. My neurosurgeon admitted that there are endemic problems in the radiology profession.
My experiences are by no means a template for typical AN behavior, or for the quality of medical professionals. But everyone owes it to themselves to double check results, and get second opinions, on doctors and radiologists.
Best of luck,
TedA
HeadCase2:
Ted,
Excellent suggestions. I also think it's a good idea to have your Neurosurgeon or Otolaryngologist review each MRI as they happen. With their background in treating AN, they can have a more informed opinion on the MRI results. Your An looks like it's growing at the "normal" average rate of 2 mm per year.
I like to have my own copies of the MRIs. But then I'm a technical person and like to see things for myself. Most MRI CDs have a viewer program that has a measurement tool, allowing you to "draw a line" across the AN, and it will tell you the length.
Regards,
Rob
NickD:
Rob,
I've used the measurement tools and here's a cautionary note. Try measuring between common points on 2 MRI's first. On key skull points I found 0.5 mm to 1 mm difference between MRI's. If you are going to compare year to year you'll need to check this slight scale difference and include that in your "growth" calculation. I just disregard comments from my wife regarding an over active ego ;D
8)
Brendalu:
Ted,
Thanks for sharing! Welcome! I am from the Houston area also. Verying interesting stuff you are reporting! I have another MRI Tuesday to check on the progress of my NF2. I will be sure to check and double check. Thanks again........
Brenda
Jim Scott:
Ted:
Thanks for some excellent advice founded on experience. I always advise 'newbies' here - and anyone I know undergoing any kind of diagnostic procedure - that you must be proactive with your health care. No one wants to hear bad news (AN growth) but AN patients with radiologists missing that kind of growth are poorly served. Unfortunately, this happens all too frequently and simply points out the need to engage a very experienced physician you can trust to spot abnormalities and the ability to question things that don't seem right, even if that means bruising a doctor's ego. After all, you'll be the one to suffer the consequences if the doctor/radiologist misses something critical, such as steady growth of an acoustic neuroma, which should have been noticed
I hope this situation ultimately works out for you.
Jim
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