I wanted to add my story to the many really good ones in the Patient Directory, as I think each one of them helps the reader decide what treatment is best for them, as well as what can go right and what can go wrong! I am a 64-year-old retired insurance executive living in Northwest Indiana. In my 30+-year career I specialized in handling business insurance for the Fortune 1000 companies.That entailed a terrific amount of travel and I was in the air about 60% of the time.I can describe the interior of every major and most minor airports in the USA and Canada!For some time I had a problem with decreased hearing in my left ear, which I put down to old age and the constant up and down problems with flying. But in January of 2003 I was awakened in the middle of the night with the intense feeling I was falling out of bed. This brought me out sleep very quickly and when I stood up – I couldn’t! After scooting on my butt to a phone, I got a ride from Sharon, my significant other, to the local emergency room. I was diagnosed with labyrinthitis and put on Antivert and an antibiotic. After about 5 days it all went away and I pretty much forgot about it, although I did notice that I was much more klutzy than usual. Then in April after another severe attack, my primary physician referred me to an otolaryngologist.
When I arrived at his office I discovered he also was pretty heavily into cosmetic surgery. Here I was, an old guy with a hearing and balance problem surrounded by a lot of women in various stages of nose jobs, breast enhancements and tummy tucks. The specialist, after a very cursory exam (about 10 minutes), told me I was getting old, had diabetes and that I really needed to be fit for a hearing aid. However, when his otologist finished the exam she told me that with such a profound loss of hearing in the left ear and virtually none in the right, she definitely felt that an MRI should be done. I went back to my primary physician who immediately ordered an MRI.
The first time one has an MRI is pretty spooky and the damn thing sounded like a concrete mixer - I was certainly glad I wasn’t claustrophobic! I got the results two days later. I have to tell you that when your physician calls you and wants to see you in the next hour you start to get a little nervous! When I got there he told me I had an acoustic neuroma, which is a generally benign tumor on a nerve that goes from the ear to the brain. My neuroma was still small (1.1 x 1.7 cm), but it would continue to grow and eventually press on the brain. Since he had had to look it up in his medical books after getting the report, I was not generally reassured by the news – in fact I was scared to death! He then referred me to another otolaryngologist (thank God) and told me that the new specialist would determine the treatment – which would probably involve surgery in my brain and ear area.
Research.On my way home I kept thinking, “What the hell is an acoustic neuroma.” My father was a hospital administrator, my mother was an RN and there were doctor’s and nurses in the family, but I had never heard of an acoustic neuroma. It sounded like a South American percussion instrument! When I got home I looked in all the reference books I had and found nothing. So I went to the computer, hooked into AOL and typed “Acoustic Neuroma”. Bingo! A whole new world opened up! I was browsing for about 8 straight hours. When I finished I wasn’t a bit happier about my situation, but I sure knew a lot more about it! I then joined the online support group and began to put myself back together.
By the time I went to see my new ENT guy I was sure that I would have a pretty good handle on what I needed to know and had begun to decide how I wanted it treated. Since I was relatively new to the online support group, I had primarily been “lurking” for some time, as I gained more and more familiarity with the situation. If it had not been for the AN Patient Archive, the ANA Guestbook, as well as hearing from the patients in the support group in various phases of treatment, I would have been woefully unprepared to determine the best course of action. These online resources are incredibly useful to someone who comes on without a clue as to what this whole situation is about. Thank the Lord for my semi-literacy on the PC, as that has been vital in what I have been able to do.
I saw my new specialist, Dr. Jamerson, In July. I was very apprehensive, but he was just great. He started it off by telling me he saw only one or two AN’s in a two year period and that what we needed to do was to determine my course of treatment and who would do it, because he certainly wasn’t going to. He was pretty familiar with the types of treatments and where I needed to go to have them done. He also felt that due to the size of the growth, my best choice would probably be radiosurgery. This was a big relief to me as I was really frightened about the prospects of surgery and much preferred the FSR techniques I had been reading about in my research. Again, I will repeat what everyone else says – talk to all the experts you can, but YOU MUST BE THE ONE WHO DECIDES WHICH TREATMENT IS BEST FOR YOU!!! After that you must then decide who is best at administering the treatment YOU have chosen.After he ran some more hearing tests (ABR) we decided that conventional surgery was out for me, and of the radiosurgical disciplines GK was also out. I was primarily interested in FSR at Johns Hopkins Hospital (JHH) in Baltimore and Cyberknife at Stanford in Palo Alto. Dr. Jamerson also wanted me to look into FSR at Staten Island University Hospital in New York (SIUH). I was very fortunate that my program with my health insurance carrier was an open PPO, and that as long as I had a referral and the Hospitals and Doctors were covered I could utilize them. I checked on my insurers website, and all three were approved. All three had their own websites, and so in August I sent the appropriate data to JHH, Stanford and SIUH and waited. I heard very shortly from JHH and Stanford – strangely enough I never heard from SIUH, but after my initial contacts with the first two, I pretty well knew it would be one or the other.
In early September I flew into Baltimore to consult with Drs Daniele Rigamonti (Neurosurgeon) and Lawrence Kleinberg (Radiation Oncologist) at JHH and mid September to Palo Alto with Drs Steven Chang (Neurosurgeon) and Iris Gibbs (Radiation Oncologist) at Stanford. Because of the knowledge I had picked up, especially in the AN Patient Archive, I was able to have a great two-way conversation with these fine physicians on a much more informed basis than I would have normally had. In both cases it became very clear that my balance had been much more impaired than I had imagined, and I knew I had to get this done as soon as possible. I wanted choose the facility where I felt the most comfortable, as I really believe that a positive attitude about your treatment and the professionals who do it can make the difference between success and failure. At both sites I was so impressed with the facilities and the professionalism of the physicians that I would have been completely at ease with having treatment at either site.
Preparation for Treatment.
After much soul searching I opted to go to Stanford with Drs Chang and Gibbs. I lived in the Bay Area for several years during my career and am very familiar with Stanford. My brother Terry lives in San Francisco and I could use his house as a base, and I really like the whole Cyberknife team. In Baltimore. I would be far from home, family and friends, and that certainly had a bearing. On Friday, September 10th, I left Chicago for California to commence the Cyberknife Treatment at Stanford the following Monday, after spending a nice quiet weekend with Terry.
On Sunday evening, September 12th, I began the preparations for treatment. At periods throughout the night I took a steroid (Prednisone) to prepare my system for the iodine injections needed to complete a thorough CAT Scan on Monday. I am very allergic to iodine and shellfish and without the steroid buildup I would turn into the Incredible Hulk after the injections. Also, since I am taking a diabetes medication that contains glucophage, I had to stop that on Saturday evening to wash it out of my system as the treatments coupled with the medication could affect my kidneys...
After a particularly sleepless night, 5 AM Monday morning the 13th arrived soon enough. Terry had offered to go with me for the treatments, but I told him I wanted to do this on my own, and at 6 AM I was on my way. The drive from San Francisco to Palo Alto on the Juniperro Serra Freeway is really beautiful - along the coastal range with fingers of fog streaming down the hillsides as the sun begins to rise over the mountains. I really enjoyed the drive and it sort of got me "up" again for the treatments. Arrived at Stanford Hospital and went to Radiation Oncology to prepare.
I met with Neurosurgeon Dr. Romanelli who is observing (and partially handling) my treatment. Dr. R is very Italian, a professor at the University of Rome Hospital, looking like a photo shot out of GQ in a blue blazer with beautiful shirt and Italian silk tie. I am reminded that European Drs. do not favor hospital scrubs as not being professional. He will soon run the Cyberknife facility in Rome, so I get another expert for my treatments along with Dr. Chang. Stanford is a teaching hospital and you get company.
I had blood tests and a tube inserted in the vein to take the iodine. Then off to the Cyberknife facility to be fitted for the mask that I would wear for the treatments. To make the mask, they take you into the chamber and put you on the actual treatment table. A thick flexible cloth-like mask is soaked and then molded to your face. It is then heat-treated and hardens into the shape of your face. There are attachments on either side that clip onto the table to insure that when they start the "zapping", your face doesn't move and the radiation doesn't get "misplaced"!
After the mask, off to the CAT scan. The CAT scan is the very latest GE "super scan" and it takes about 1 minute for the entire scan (no more concrete mixers – I have hit the big time)!! I then had to wait an extra hour to make sure that there will be no iodine reaction (which, thankfully, did not happen), and I am sent home to return on Tuesday at 8:30 am to begin the treatments. This all took about 3 hours. Drove home and took it easy at home.
Tuesday, September 14th... I am there bright and early and go to the Cyberknife Suite. Very short wait. Ushered into the room and on the table. The mask is strapped on and I am laid out. Told to keep my eyes shut as the machine has a laser that searches out your face for landmarks in its treatment. I can tell that I have been elevated and the machine begins to run. Various pitches and hums; all of a sudden a sharp smell of (ozone?)(Me?) fills the air. Not sure what (or who) is making the odor, but it certainly gets my attention. Then various red and white flashes under my eyelids and I'm done in about 20 minutes.
Dr. Romanelli (today in another great outfit - this time a three piece black suit with Italian silk tie) says all went well and gives me two steroids (Dexamathasone) as there could be swelling in my head from the treatment, though this was not expected. He also said it will definitely bring my sugar up "a little" (a little translated into 120 pts!!). I immediately go home and all is well - no problems at all.
I feel so good I decide to reward myself and do a little shopping in San Francisco and take the trolley downtown. I go to Gump’s, L'Occitanne, Nordstrom and am on my way back home on the Muni when I suddenly feel like I have been sucker punched right in the head. Fortunately I am only about 2 blocks from Terry's house and I reel home and stagger off to bed! After three hours I recover enough to move around... no more shopping I can tell you!!
The next two days are just like the first (except that Dr. Romanelli has two more great outfits – I wonder idly how many he has and did he go over on weight when he flew in here), but I now go straight home, and while I get dizzy it's not nearly as bad as the first day.
At the conclusion Dr. Chang meets with me and says so far, so good. I will have MRI's done at 6-month intervals for the next two years. I will consult with Dr. Chang by phone except at the one and two year anniversary when I go into California for physical checks. Dr. Chang warned me that it would all catch up... the stress, the adrenaline, the treatments and to take it easy for three or four days. What a relief, I am done, its Friday the 18th, and I am going home.
A very routine trip home and I settle in. I feel very tired. Saturday evening I go to mass with Sharon and family and thank God for my return and the completion of my treatments. As I write this on Sunday the 20th, I am absolutely beat!! Will stay close to home for a day or two and see how I feel. I am confident that I did the right thing and will now trust in God's judgment that all comes out as it should. So far – so good!
I also cannot tell you how much finding the AN Patient Archive meant to my well-being and me. I am so very grateful it exists and don't know what I would have done without it. I also want to thank the members of the online support group for all of your thoughts and prayers - they meant so much to me. I particularly want to thank the following new friends on the support list for all their help in this story: Kate Besserman, Dina Goldin, Nita Alexander, K U Patel, Tony Boxer, and especially Philip Van Gelder. Take care and Love – I will update at 6 months and one year.
<JHBaransy AT aol.com>
Last Edited: Thursday, November 20, 2003