ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: ShanaBee on September 07, 2007, 03:20:23 am
I was diagnosed today with acoustic schwannoma, 27 by 25 by 22 mm. I am only 27, everything I have read says it occurs more often in adults over 50 years of age. Also, he said it was pressing on my brain stem??? Everything that I have read says this is life threatening? My symptoms are temporary but sudden vission loss, horrible migraines, and ear pain. The strange thing though is that I have coughing fits and my doctor said it was the tumor pushing on the brain stem. Is this possible??
I think I read somewhere that ANs are more common for those between the ages of 40 and 60. I'm 45 and mine was diagnosed in April 2007.
Sorry to hear about your AN diagnosis, but welcome to this forum. You'll find a lot of good information here. Sometimes the docs don't have the time to really sit down and tell everything they know about AN. Iin some cases they may not know much, since AN is rare enough that they rarely see an AN patient. You must have lots of concerns and questions, ask away here and do some Internet research.
It sounds like your doc may have said your AN is life threatening. AN can be life threatening if it's pressing on the "wrong" place, but that is very is rarely the case. AN is usually slow growing, the average growth rate is thought to be 2mm per year, so you have time to go through all your options. I would advise not rushing into treatment after only seeing one doctor. Get second and third opinions. Explore the various treatments and their pros and cons until your confident that your're doing the right thing. Make sure that you see doctors that have vast experience threating ANs, and are currently treating them regularly. That usually means going to a regional tertiary teaching hostpital.
On this Forum are several AN patients younger than the average age for diagnosis, we even have a few teenagers.
One thing you may want to do is obtain your own copy of the MRI. They're usually on CD with their own viewer program. Mine where free for the asking.
The loss of vision sound a little scary. A few people on the forum have reported some visual auras before diagnosis, which is usually a precursor to migrain headaches. The coughing fits sound like your AN may be pressing on one of the two facial nerves, this can affect swallowing, etc.
Everyone here knows what it's like receiving an AN diagnosis. It's scary, but as you learn more about it you may not feel as freaked.
Sorry you have to join our exclusive little club, but so glad you found this site. You will find a lot of caring, knowledgable people who are more than willing to answer your questions and to offer support. It's also a great place to vent your fears and frustrations!
As for your age, you are certainly not the youngest that has been on this forum. AN's strike people of all ages and we have many forum members who are teen-agers and twenty-somethings.
Rob said this, but I'll just add this: Just like in real estate, with AN's it's location, location, location. If yours is pressing on your brain stem, then you very well may be looking at a surgical procedure in your near future. The general consenses around here is that it is in your best interest to find the best possible surgical team to do your surgery and this would mean that they are highly experienced in this field. Ask how many AN surgeries your doctor has done in a year. 10? Not enough. A couple hundred? better. We cannot stress this enough: Find experienced AN surgeons.
What part of the country do you live in? Are you close to a major city? You might connect up to someone else who has had their AN treated near you and that could be a big help to you as far as information about that place or doctor.
Good luck to you in your treatment and eventual recovery. This isn't a journey any of us wanted to take, but you'll find the folks on this forum good company down this unexpected road you are taking.
Sue in Vancouver USA
Rob and Sue have given you good advice, it's a shocking discovery, but all will be fine....there's a huge family here to get you through this. As for the coughing, I would suspect nerve disturbance, not brain stem disturbance. You have 12 cranial nerves on that side, one of which your tumor is growing on, and others it could be pushing on. I had 6 nerves involved. My guess would be is that it's messing with your #11, the spinal accessory. That is the nerve responsible for swallowing. Mine was on the 11, but I was lucky enough not to have that problem.
Hang in there, we're here for you!
Thank you for your responses and advice. I live in Orange County, California, my doctor recommended I use Dr. Rick Friedman at House Clinic in Los Angeles. I plan on seing a couple doctors before I decide what to do. I heard there is a new surgery, endoscopy, but I am unsure if this is a safe procedure and other than one doctor I was unable to find more information regarding this procedure being performed in the U.S..
Up until last week I was working full time and quit because I was unhappy with the way I was being treated. Of course after I quit is when I find out about the acoustic schwannoma- almost 3 cm in size, of course this was after going through skin cancer. I have private health insurance but of couse this came at a bad time because I don't know if I should be looking for full time work or waiting until after I have been treated. To top it off, my parents are realtors and because of the horrible market we are in this couldn't be helping anything. I feel really horrible about all of this mainly because of my parents financial situation and the fact that my brother is planning his wedding, working full time, and attending school at night. They are all very worried about me but I know in the end, as long as I can find the best doctor out there, things will be ok.
Thanks everyone for allowing me to vent and for the kind words.
Look for threads posted by bpham, who is also a recent diagonsis. bpham has recently consulted with Dr. Friedman of the House Clinic, and am sure if you personal msg him, you can get feedback. For endoscopy, search through the forum. There were some threads regarding endoscopy being done at the Skull Base Institute (SBI)? I think mostly on the east coast. good luck.
I initially checked into the endoscopic approach. There's Dr. Shehenian at the SBI in LA. Also at the University of Pittsburg.
Both sites have informative videos.
I found this site not long after being diagnosed and became so engrossd with reading everything that I didn't even notice the search option at the top of the page.
Also, if you join the ANA, you'll receive a packet of very helpful information.
I haven't received treatment yet and continue to read everything I can get my hands on. I am so thankful to have found this forum when I did.
Please keep us updated. You will be in my thoughts and prayers.