Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 and Crew, We have had this on so many radiology reports that it is ridiculous. Although we do look at the MRIs each and every time we see the neurosurgeon, he relies on both the written report and the films. It doesn't help that the films are being done in several different sizes these days, ranging from some that have one scan on a sheet to those that have between 4 and about a dozen. It makes it a bit harder to do comparisons by eye when the images are blown up or shrunk down. After several years of no significant changes, we had the radiologist compare the recent scans with the oldest scans available. Guess what happened? Those little incremental changes added up to a change that was suddenly significant. Everyone needs to be aware of this possibility in their situations. Was the radiologist wrong from year to year? Probably not. It's just if you have a mm or 2 increase over several years, it simply adds up. Change of subject. It is my understanding, as Marie Drew mentioned, that the Lisch Nodules are actually considered NF1 symptoms. The same goes for the Cafe'au laits. That said, Fred has Lisch Nodules and Cafe'au laits and has Cafe' au laits too. I think it's more of an issue of which type these are most often found in as opposed to them not being found in both types. We know there are many people with what our neurosurgeon long ago termed " crossover symptoms " . The diagnosis then would presumably be made on which one they seemed to have more symptoms of. On the Crew we have a handful who have been told they have both types of NF at the same time. Diagnosing by the chromosome defect would really be the only way to nail this down one way or the other or to indeed show that they have both types as their doctors have told them. (NF1 defect is on 17, NF2 is on 22.) For people who have been told they have both types of NF, there's really no necessity to do the genetic test. The big issue is whether they are aware of and dealing with NF-related medical issues (in whatever way they deem apropriate)-whichever type or types they may have. ...Donna Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.