Waiting for appt.

[Mammoth81]

Hi everyone! I am new to this discussion forum, just diagnosed with AN last Tuesday. I am still waiting for my appt. with a neurosurgeon. I have no idea about the size or anything......the nurse at my PCP's office just called and said there was an AN on my MRI and I need to wait for the neurosurgeon's office to call for appt. I asked questions and met with a brick wall. Very frustrated. So I am trying to learn all I can online and from discussion forums but I know every case is different. I live in Little Rock, AR. Has anyone diagnosed met with MD's in this area? I did look at the MD list and found some but am looking for personal perspectives from people. Any comments would be appreciated, thank you!

[rodneyd]

Hi there Mammoth81,

I think the best advice I have seen is to find a Regional Center with a neurosurgeon with loads of experience in dealing with AN's.  It would probably not be in your best interest to go to someone who does one per year, for example. 

Also, most centers have radiation treatment available if you want to go that direction. 

There are several Regional Centers in the US that perform lots and lots of them every year.  The House Clinic in LA will give you a free consultation of your AN if you have the MRI sent to them electronically. 

Don't be afraid to go outside of your area of the country for a consultation. 

Join the AN Society and read their literature.  See if there is an AN Support Group in your area, as it would be helpful to discuss your situation with others who have already been down that path.  (you can find a list of support groups on this web-site).

Educate yourself through the internet about this condition and it's effects (you seem to be doing this already).

The neurosurgeon will be able to tell you the size of the AN. 

Depending on the size and location of the AN, you will probably have three options; Surgery, Radiation Treatment or Watch and Wait.  They each have their own advantages and disadvantages.

Consider getting more than one opinion.

I went through all three when I first found out about my AN last October.  First I just wanted to get the tumor out of my brain, then I decided that Radiation would be preferred, and I finally settled on W and W, so I went through the entire gamut of emotions and decisions. 

There are a lot of very caring and wonderful people who post on this site.  They have all been in your shoes at one time or another.  Then there are some that only tell their horror stories.  I would hope that you will be able to filter out some of the fear and negativity. 

For me, I find that prayer and a good support group of family and friends is very important.  I have a whole lot of people praying for me, and so far, it seems to have worked, thank God. 

Good luck in your search and keep us informed about your progress.  There are lots of people who care about you and your situation.

Rod