I was reading through a string on CK and the fear folks have about dealing with an AN and having to make CK versus Surgery decisions. Felt it might be helpful to share my story (and encourage others to as well) for they are real, "undoctored" (no pun intended) and non-clinical (meaning we are the ones dealing with the day-to-day issues and outcomes from decisions we make). Hope this helps people struggling and looking for information.
I was diagnosed in May with an AN – it was totally a freak accident it was found. I had an ear infection and was heading to Japan (VERY long flight with an ear infection), so my doc sent me to an ENT who suspected an AN. When I returned from my trip, an MRI confirmed his suspicions, and I was off and running deciding how to address my new found appendage (major joke in my family since I have had every possible “uselessâ€? organ removed, and now that I have run out of those, I’ve become a harvesting farm for new useless growths). I opted for surgery due to two of my physicians prompting, and it wasn’t until another AN alumni read my memos, took a day off from work and conducted research, and URGED me to consider CK, that I actually considered this option seriously (Thank you Josh!!). ÂÂ
Verbal and auditory skills are critical in my profession, and surgery and anticipated outcomes was going to seriously affect my livelihood. I discovered my AN was only 1.2 cm, and I was the perfect candidate for CK.ÂÂ
I researched the East Coast for locations (didn’t feel it was necessary to travel West when I live in Atlanta), and discovered several great places. I chose Naples, FL – for a whole host of reasons from family who winter there, to the fact it is winter and if I’m going to have something like this done, at least let’s pick a “tropical� like location! It ended up being a great choice for me! My Radio Oncologist was phenomenal – she spent a great deal of time with me, got to know me personally and develop a treatment plan that was most suited to fit MY life. She also told me they are treating AN’s at 4 cm and even larger through this process! My Neurologist was great – conservative, Type A, knowledgeable, and even funny. He preferred to do a single CK treatment since this was his normal approach. I expressed a need to save my hearing, and when he told me there was a 60-70% chance of saving my hearing, I told him I didn’t like those odds (they were lower then literature I had read). I told him I was also considering two other locations – Miami and Baltimore. He told me he worked closely with the neurologist in Baltimore and I asked if he would give me better “odds� then the 60-70%. Do you know he picked up the phone and dialed him directly to ask??? I not only found this quite humorous, but also very “patient� centric and it endeared him to me. My coordinator (not sure what else I should call him other then “King of All that is Good� – he was fabulous!) was an excellent man named “Bones� – he was incredibly knowledgeable, personable, worked closely to get to know me, worked to coordinate a schedule that worked for me, and was there through the whole process – I loved the personal touch, and he made me feel like it was all about me and my care – he was EXCELLENT! Since first seeing me three weeks ago, he has had a string of people showing up for the same procedure – it’s like an epidemic! The entire staff including the nurse Jody and the people responsible for the CK were great!
Based on my need to save my hearing, the Neurologist and Radio Oncologist opted for the 3 “treatment� option – feeling this gave me a greater chance of saving the 70% of hearing I currently have (1/3 improve their hearing, 1/3 remain the same, and 1/3 have reduced hearing). Prep included a visit with the Neurosurgeon, the Radio Oncologist, a CT and MRI scan and creation of the “mask� (which I now have sent to the taxidermist for wall mount preparation!). It was all very easy and smooth and conducted over 2 continuous days.
Once the prep was done and the treatment plan developed, I was scheduled for the procedure and actually had it done Tuesday, December 13 through Thursday, December 15. Each session lasted 40 minutes, it was painless and easy. They all made it relaxing as possible, and even had a stereo system to play music throughout the procedure. (Since they need you to try and stay still, I would encourage you to bring non-toe-tapping music).
I am feeling some of the immediate side effects that are listed – such as nausea, slight imbalance, and tiredness. Other then feeling like I’m on a ship in rough seas, and I want to hang my head over the side of the railing, I feel ok. Quite honestly, if this is the worst I need to contend with, I CAN handle this!
Down the road, I might experience swelling, and headaches with the continued side effects from above, with the additional possibility of reduced hearing…only time will tell as to the results.
Overall, this was an excellent option for me. I am very glad I chose this route and am very optimistic as to the outcome. I will keep all posted as to the months post surgery. I would encourage others to share their stories, and if you are considering this option, or are not sure…definitely consider it before choosing your final treatment plan. In fact, my neurosurgeon wouldn’t even speak with me until I had considered, met with and viewed surgical options. I felt it was necessary to view all options before making a final decision. Can’t say I would have done it any other way!
Best of Luck to all!
