I have been recently diagnosed with Left Side AN ~1.2cm. At this time I have decided to wait for another MRI at end of Feb. to determine if there is growth. Per discussions with one of the Dr's I consulted with, he recommend that I proceed with surgery or radiation if there is growth. I also felt I just needed time to process this whole thing, and didn't think waiting a few more months would not hurt.
Even if there is no growth, I am aware that my symptoms can still worsen over time. At this time I am researching my surgery options. In the process I have learned of NF2. I have also learned that the "Cafe" spots may be an indicator of NF2. I believe I have these spots on my leg, I have noticed them since my teens, and they seem to become more noticeable in the summer when I have a tan. So here are my questions:
1.) I think I have the "Cafe....." spots on my legs. They are currently very light, and difficult to notice. They cover an area on my left calf about 3 inches x 2 inches,
a.) If any of you have these, do they get darker with a tan, if yours happen to be on areas that get sun.
b.) Do you need a dermatologist to diagnose these spots? If not, who would diagnose these, do you need an NF2 specialist or are the AN Dr's able to diagnose this?
2.) I think that if I knew I was NF2, it would influence my surgery decision, i.e. I would choose Retrosigmoid over Translab to save as much hearing as possible and be willing to take the additional risks for headaches etc...
a.) Has anyone here had genetic testing, and used the results if "positive" to influence their surgery decision?
3.) Let's say I just forget about NF2, proceed with let's say Translab and lose all hearing in my ear. Later down the line I get another AN.
a.) Per my research I would be considered NF2. What is the general impact to treatment choices at that time?
I know that NF2 is rare but I have other rare unnoticeable genetic imperfections such as liver hemangioma, and clubbed thumbs. I don't think any of these are linked but I seem to have my share of genetic imperfections and would not be surprised with the NF2 Diagnosis. No one in my family has any of these issues. I do have a cousin who was born deaf, but not sure of the specific cause.
Thanks in advance for your replies.
This site has been invaluable to me over the past few months.