Re: No Significant Change

[Guest guest]

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