Help- just diagnosed- ready for removal

[alsummers]

I am in Columbus OH and have just been diagnosed.  About 1.5 cm by about .6 cm.  Have consulted with Dr. Reyzenman in Columbus who said it is in a great position to be removed.  He is talking the invasive surgery.  I am going to the Mayo Clinic on Monday to consult with Drs. Bell and Gorman.  But tomorrow I have a phone consultation with Dr. Shahinian of Skull Base.  They are providing the phone consultation for free since it took them 13 days to respond to my initial inquiry 
Can anyone share with me their experiences?  I have read a lot of the posts but am still confused.  My health insurance evidently does not cover Skull Base and Dr. Shahinian.  It does seem to cover Allegheny General Hospital but NOT Dr. Jho.  I would really like the minimally invasive surgery but do not want to go the gamma knife option- too many unknowns.

[Mark]

If you are more comfortable having the AN removed through surgery, then that's what you should do, but I am curious what "unknowns" you're referring to relative to radiosurgery and where you heard them. If you're comments are based on what your doctor in Columbus told you then I would take it with a grain of salt. This board is filled with stories of surgeons misrepresenting radiosurgery for AN's either through ignorance or deliberate intent. You'll find everyone on this forum will support you in any decision you feel is best for you, but if you are early in your research process, then I would suggest you owe it to yourself to seek out a doc who is experienced and specializes in radiosurgery so you have all the facts. I don't think there are really that many "unknowns " out there

Mark

[mindyandy]

If you have any questions of the unknown about gamma or CK visit the website cyberknife.org. Its a website where people can go and ask questions. Drs will give you their opinion and will answer any unknown questions you have. Please look into this before making any rash decisions.

[OTO]

alsummers,

Unfortunately, we welcome you to our little group here.   Your AN is still relatively small 1.5cm (equals 15mm) and if you're not having too many symptoms, you can take your time and do as many consulations as you can to get comfortable with your treatment decision.

If you decide on surgery, look for the neuro-surgeon/neuro-otologist team that has done many AN surgeries.    Experience and repetition help the surgical team avoid some of the complications that can occur.  Go to the ANA home page connected to the forum and read the list of questions to ask the doctors.   Take someone with you to the dr appts to help you take notes or to ask questions...  

Another speciality clinic that will do phone consultations is the House Clinic in Los Angeles.  They have a reputation for recommending surgery first (I had my surgery there).   However, they are one of the most experienced clinics in treatment of ANs.  I think in 2006 they did 240 or so surgeries.

Radiation therapy has been done successfully too.   A good source of info is the CyberKnife Support Group forum which is monitored by several doctors.  They respond to questions.    

Unfortunately, all treatments have possible side effects and complications.   Each patient and AN is different.  Size, location, and other factors mean no one's outcome is the same.   People have different levels of tolerance to the side effects too.

Feel free to post questions on this forum and people will respond either by posting onto the message string, or by sending you a PM (personal msg) if you prefer...  

[sahar32]

Hi,
Did you have your surgery yet at Skull Base? I just had mine, you will love them. They are the BEST in the world trust me. You can have full trust, he is the most caring and nice doctor you will ever meet. I had my tumor removed by him few weeks ago and it was pretty big. He will take care of you and give you the respect you deserve. I hope you are doing good and let me know how your progress is if you don't mind.

Sahar

[fbarbera]

Please consider investigating both Gamma Knife and Cyber Knife as alternatives to surgery.  Gamma Knife has been used to treat ANs for decades -- it ha been quite successful and well-studied.  Ultimately, it is your decision but you do owe it to yourself to consult with qualified doctors who can give you complete information about these options.  Keep in mind that surgeons generally will recommend surgery because that is what they were trained to do.  Try to consult with doctors who are trained and experienced in treating ANs with both surgery and radiation -- that is the best way to get an objective assessment.  My first consultation was with very prominent surgeons who told me essentially nothing about radiotherapy.  Ultimately, I decided on Cyberknife, which my initial doctors didn't even mentioned.  Again, you will ultimately have to decide the best course for yourself, but because your tumor is small, you have time to consult with three or four different medical teams and to thoroughly explore both surgery and radiotherapy.  One good place to start is the Cyberknife Patient Support Group website (where a few volunteer doctors will give you their opinions and advice for free).

Best of luck, Francesco

[NW]

Alsummers

Hi I  just read your post, I am from Ohio myself & just recently had surgery. I am 3 hrs from Columbus. You have the absolute best Doctor right there at Ohio State University. Dr. D. Brad Welling. I was dx. in July, my tumor was 9mmx8mmx10mm. I did an awful amount of research. I went to the Cleveland Clinic, & had phone consults with Allegheny & the House Clinic in LA. My insurance would not pay to go out of the state. When I went Columbus, I knew immedietely Dr.Welling was the one. I had considered the Gamma Knife, but I was looking long term, & the Dr. was just beginning to use lower doses of radiation & long term study results are not out yet. Since I'm young & healthy, I figured I may as well get the tumor removed. I just had surgery Oct. 17th. I'm fine! I did experience a CSF leak, but they put a lumbar drain in me & that sealed it off. I could not have asked for more caring, compassionate people. I found that if you find a physician who does 50 surgeries a year you are in the best hands, & Dr. Welling does that many. The office staff is amazing. Hopefully you'll read this before you make any decisions. Believe me, I researched my brain out!! Haha! I work in the medical field so I asked every question imaginable! Down to asking if they'll put screws in my head to hold it in place!! Please let me know if there is anything I can help you with. As I look back , surgery was a breeze! No headaches, nothing!! Best of Luck - Nancy