Acoustic Neuroma Stories
The following patients have been kind enough to share their experiences of Acoustic Neuroma removal at Michigan Ear Institute. They felt that the Internet dwelled too much on negative stories often encountered when patients undergo treatment at centers that have little experience with such Acoustic Neuromas. When it comes to tumor treatment, experience is essential. MEI physicians have removed over 1,000 tumors.
Like nearly everyone, these patients were anxious before surgery. They wished that they could hear of other patient’s stories. These contributors who share their stories below have become Support persons willing to have tumor patients read of their experience and communicate with them by email. We are grateful for their time and compassion. Many other MEI patients have also volunteered to speak with tumor patients by phone – their numbers are available upon request.
Note: The following information is not intended as medical advice. The experiences related are those of individual patients. Each person and experience is different. If you have an Acoustic Neuroma, speak with your doctor for specific information.
Patient Story 1 – October 2004
“Relax, you’re in the best of hands – I know. When I shook Dr. Jack Kartush’s hand at our first meeting, I knew-a firm yet incredibly soft grasp – very comforting. Here’s “the rest of the story”.
In January 1998, after flying with a somewhat stuffy nose to return from a vacation, I became ill for two weeks with a dreadful double ear infection. Coincidentally or not, even after that I felt as if I had fluid or fullness of my right ear. I doctored off and on for years for ear aches, ear wax, sinus and allergies with no relief from that feeling. I began to notice a ringing in my right ear and a hearing test in Jan 01 showed 0% hearing loss due to nerve damage. I guess when you’re over 55 years old, no one including myself, gave it much thought – WRONG. It should have been RED FLAG #1. In May 2001 my tongue became numb (I called it scalded) around the outer edges and comments to doctors and dentist didn’t bring any relief. That should have been RED FLAG #2. The same symptoms followed for seven months with jokes about my hearing and tongue. Beginning in Jan 02 I noticed very subtle balance problems mostly upon walking at night which I dismissed as probably related to my hearing – OOPS – RED FLAG #3. Jan 20, 02 while watching TV the entire right side of my head went numb for 15 minutes and then the numbness disappeared. Doctor time again! Numerous tests were performed over two days. AN MRI spotted it – a preliminary of acoustic neuroma, a brain tumor with a 90% + chance of being benign. I was shocked, but relieved to know the cause: all my symptoms were coming from something that had been growing for a long, long time. The hunt was on to find an appropriate neurosurgeon.
St. Vincent’s in Toledo, OH to whom I was referred from my home town, in turn referred me to the Michigan Ear Institute as the best center in our area, especially after noting the tumor’s larger size of three centimeters. Then, I’m convinced, is when the story got orchestrated “from above”.
My friend pulled up MEI on the internet and randomly picked a doctor’s “bio” to print (because he looked handsome). His name was Dr Jack Kartush and as I was reading about him, his name rang a bell. I jumped up, sorted through our children’s serendipity book series and there it was – a book called Kartusch – a story about hearing the beauty of the world! A huge calm came over me – I had been led to my surgeon. Sure enough, when I called St. V’s and asked if they could refer me to Dr. Kartush, they had already picked him. My first appointment was very informative (the office video was somewhat sobering, but necessary) and Dr. Kartush put me very much at ease. I would need a 2-stage surgery.
Our family had two big events on the books for ’02: our daughter was expecting twins and our son was getting married, all on Mother’s Day weekend. Kris in the scheduling department at first had no encouraging surgery dates, until she realized there were five Fridays in March which allowed some flexibility. Two calls were made for availability – yes for a surgical suite; yes for an assisting neurosurgeon. The computer was checked for two necessary preop office tests – yes, available back-to-back one week prior to surgery with Dr. Kartush open right after them! Kris’ comment – “Do you have someone looking over your shoulder?” I believe so. My first surgery date was then set for Good Friday of Easter Weekend, six weeks from Mother’s Day!
Surgery day – eight hours with 80% of the tumor removed successfully (long wait for the family). Great care in ICU that night – loads of checking vitals – off and on sleep only. Post-op walking and balance exercises were tricky, but each day was easier – no headaches (Although the bandages looked like a cross between Pochahontas and Princess Leah of Star Wars). The hospital staff was great – the mashed potatoes weren’t! I went home in five days the usual two hour ride doubled as we had to stop numerous times because I couldn’t tolerate the head jarring from the bumps in the road. Each week at home showed progress (the exercises were crucial) – the 4th week was better, the 5th week I felt like myself (I think the foggy feeling from the anesthesia was wearing off), the 6th week I danced at our son’s wedding and the 7th week I flew to Orlando to be the “night nurse grandma” of twin boys!
I went back to work and the second stage surgery was set for four months later in Aug ’02. Again, an eight hour one – complete success – no facial problems – a few headaches this time. I didn’t even need the physical therapy team as I could do all the balance exercises on the first try. I did have the normal residual tingling, ear to jaw, off and on for a while – no big deal. The only lasting difficulties I have are knowing from which direction distant sound is coming (I usually do a 360 degree turn, much to my husband’s amusement) and hearing in a crowd with background noise (I just nod politely and hope it is a correct response!). The new BAHA (Bone Anchored Hearing Aid) is a possibility for the future. One-on -one, I think I’m hearing out of both ears until someone tries to talk to me in my right ear (now deaf) while giving me a hug! Also, I sometimes forget and pick up the phone right-handed to listen in my right ear for the dial tone- WRONG! A good sense of humor is helpful! So, a few adjustments are necessary, but I’ve returned to working, golfing, gardening, climbing ladders, traveling and grandparenting as much as before – two more grandkids are due by the end of ’04 – I can’t wait.
I have a profound appreciation for my gift of healing, so my advice is to maintain a positive can-do attitude – you’re in the best of hands!”
Patient Story 2 – March 2004
My name is Ron Collier. I am a very active 67 year old man married for 45 years. I retired after 35 years as CEO of a large credit union. My wife is an LPN. We have 5 children, four daughters and a son. The baby is 38 years old.
On Thanksgiving Day, 1998, I was treated in the emergency room (ER) for vertigo and dizziness. At that point, I had some hearing loss. I began seeing ear, nose and throat doctors (ENTs), neurologists, and my primary care physician to deal with the hearing loss and vertigo. Many hearing tests and medical tests were done. As time progressed, I suffered an increased loss of hearing, decreased sense of balance, and I had bouts of dizziness for about 3 years from 1998 to 2001.
Eventually I was referred to Dr. Jack Kartush at the Michigan Ear Institute. By the time I met Dr. Kartush, I could no longer drive a car. I needed to run my hand along the wall of a room or hall to walk straight. My family members were doing all the driving. Dr Kartush and his team spent almost an entire day examining me, reviewing my personal history, my medical history and my CT scans. We returned home with orders from Dr. Kartush for physical therapy and an MRI before any decision would be made. I completed the lab work and MRI at our local hospital.
Four days after the MRI, I was contacted by Dr. Kartush’s office and told I had a tumor called an acoustic neuroma. It was located between my ear and my brain. The size was comparable to a ping pong ball. We immediately went back to Dr. Kartush’s office. He was surprised to find a tumor, but we were at the best possible place to handle this problem. After some discussion among my family and Dr. Kartush, we decided to go ahead with surgical removal of the tumor.
I was operated on at 9:00 in the morning on June 21, 2001. I awoke at 9:00 p.m. to the news that the surgery was a success. I was able to sit up. I didn’t have nausea and I had only a little pain. My facial nerve was intact and appeared not to be damaged. The balance and hearing nerves were removed during surgery. I had quickly regained control of my balance and no longer suffered dizziness. There was no distortion of my face.
I was kept in the intensive care unit (ICU) for 12 hours, but after eating a full breakfast, I was transferred to the medical floor. Later on that same day, I was walking around. I needed a little help to the bathroom, bit I had a good appetite. The next day I walked without a walker, under the supervision of the physical therapist. The third day I bathed myself and walked several times. Dr. Kartush’s intern came to visit me and talked a little more about my surgery. Dr. Kartush stopped in Sunday evening around 9:00 p.m. We agreed that I could leave Monday morning. He was very pleased and surprised with my recovery. The above notes were written on August 8, 2001.
In August 2003 I will return for my second annual postop exam and visit with Dr. Kartush. I will bring a current MRI, which I hope will be free of any evidence of a tumor. Two years after my operation, I have come to realize that my recovery is over, and I must learn to live with limitations caused by the acoustic neuroma. The hearing and balance nerves were removed from my left side during surgery. A hearing aid will not help me hear better on the left ear, as the nerve that connects the ear to the brain has been removed. Continued improvements in balance, through physical therapy are not probable because I have only one inner ear that functions to guide my balance ability.
I have learned to use my eyes and my sense of touch to compensate. I have good days and bad days. Importantly, most of the days are good. The bad days are caused by weather, such as changes from high pressure to low pressure. High pressure summer days are good. I usually become inactive on bad days. Bad days are made much worse by a weak left ankle. For me, step ladders are an accident waiting to happen. I have played golf since I was 11 years old and had a 10 handicap prior to my operation. I am playing golf again, but I have some balance problems when I swing hard from the tee. I believe I can overcome this, and I still love to play. I must emphasize I feel great most of the time and I am in good spirits, I will always be grateful that I was directed to Michigan Ear Institute and Dr. Jack Kartush. ON a scale of 1 to 10 my quality of life now rates an 8 and I am two years postop. Regarding the preop period, I would have rated my quality of life as a 3.
Anyone diagnosed with a large acoustic neuroma is faced wit an awesome, yet simple decision. You have to consider the quality of life you can achieve and tolerate with a tumor growing in the head, and you have to weight that against surgery to remove the tumor. My wife, four daughters, and my son chose MEI and Dr Jack Kartush to do my operation. Due to his vast experience and state of the art techniques.
Patient Story 3 – March 2004
Kartush. A simple name. Succinct. Professional. Purposeful and confident, yet not intimidating. Much like a man bearing that cognomen, Dr. Jack Kartush.
It may seem odd to begin an acoustic neuroma (AN) story with discussion of a man rather than a tumor. But as I began to write my story, I realized mine was less a tale of a tumor, and more a story of the man who made the tale of the tumor, well, boring.
When it comes to tumor tales, boring I think is best. Boring ones are the ones that contain few or no surprises, flawless medical procedures and successful, uneventful recovery. Before disagreeing with my definition, understand it is relative to those other tumor tales that saturate the Internet, the ones full of woe and despair and things gone wrong that leave you emotionally depleted, torn between sympathy for the writer and fear for your personal journey.
It goes without emphasis that brain tumors are frightening – most frightening for me at diagnosis, when I had little data to counter my emotional hysteria. In late September 2003, I happened to be sitting at my computer when my ENT called to tell me that she found a 2.2 cm AN tumor and, no question, it had to come out. The fact that she also told me “If you’re going to have a tumor, this is the one you want” did little to soothe me. Quickly turning to the Internet in a search for more knowledge, I discovered within 15 minutes more agonizing AN personal accounts than I cared to read. This also did little to soothe me. But I also found much technical information regarding the tumor itself and available treatment options. I was able to decide that surgical removal was my best option, particularly given the size of my tumor. With a little more time and effort, I sorted the more reliable information from the less, and began to realize that what seemed to separate the tales of despair from the (few) stories of happy endings was the experience of the surgeon.
I had been referred by my ENT to the House Ear Clinic in California and was requesting information from there, prepared to make the long journey from Michigan just to be at the hands of the “best”. Then, on my umpteenth Google search, I discovered a testimonial from a woman who had a wonderful success with Dr. Jack Kartush at the Michigan Ear Institute. Only then did it occur to me that my ENT had first recommended Dr. Kartush when I had asked for the “best”. I can only credit the grace of God that led me to Dr. Kartush because at that very instant everything began to take order, to fall in place with an ease unexpected.
I researched Dr. Kartush. I knew before I met him that he was a long-standing, leading expert in the field. I knew that he had invented the ground-breaking facial nerve monitoring equipment now employed as standard fare in today’s AN surgeries. I knew that he performed these surgeries weekly and had done so for many years. I knew that his track record for successful recovery was simply outstanding. Yet, I still didn’t know what to expect when I met him a few weeks later.
Dr. Kartush is not, by any stretch, a tall man. That would not be a notable point, except that when I first met him, I was instantly in awe of the tremendous presence of this man that seemed to almost conflict with his physical stature. Given his credentials, I think I expected Dr. Kartush to seem unapproachable, perhaps distinguished with an air of pretentiousness. Quite the contrary. He was confident without being cocky. Knowledgeable but not portentous. He was a steady effusion of calm and peace. It was late in the day, he had not yet eaten lunch and was far behind schedule, and I could have sworn he had spent the entire day in mediation and yoga.
In that first visit, Dr. Kartush did much explaining. He fed me the data I craved to balance my emotions: data regarding the tumor itself, both in reference to technical information and my own radiology films, data on the translabyrinthine suboccipital surgical procedures and equipment used, data on what to expect before and after surgery, and even data reinforcing his own credentials. Then, he patiently answered the slew of questions offered by both my husband and me. He chuckled when I informed him that I had decided I would be home from the hospital after 3 days, and emphasized to me that most people stay 5 days. Even though I’m certain he had heard the same questions, same concerns and maybe even the same needless, unfounded anxieties countless times that day, Dr. Kartush treated me with the utmost respect and individual attention. Both my husband and I left his office that afternoon feeling calm and confident.
I can’t tell you that in the weeks ensuing I always felt that same level of confidence. Anxiety finds a way to penetrate even the steeliest resolve. But I can say that I never once doubted the capability of my medical team. Dr. Kartush’s staff his assistants, nurses and office staff provided exceptional support both before and after surgery. Questions were addressed promptly and with care for both my physical and emotional well-being. Even insurance matters, which can prove to be a true test of will, were handled professionally and with surprising ease.
Very early in the morning on Friday, November 21st, I was not enjoying myself. I hate just hate playing the role of patient. And I didn’t want anyone tinkering with my brain. After all, what if they dropped something and left it in there? What if they accidentally removed something important that was supposed to stay? What if the power went out at a crucial moment? Granted, my thoughts weren’t exactly rational. But I was wearing a flimsy gown that aired in all of the wrong places, sporting socks up to my thighs with built-in leg circulation devices, and was blind as a bat without my contacts or glasses. I think I deserved a bit of irrational logic. Then Dr. Kartush showed up, still exuding the serenity of a natural yoga master and I thought, “well, he seems pretty confident guess I should be, too”. I’m not certain if it was Dr. Kartush’s calm aura or the injection of the happy drugs at about the same time, but the irrational thoughts subsided quite quickly.
Fast forward about six hours and the next thing I remember is Dr. Kartush waking me from a dream. It was a lovely dream and I recall being none too happy to be stirred from it prematurely just to blink, smile, and squish my face into a myriad of expressions. I continue to be amazed at how clear my mind was at that point: I marveled that the surgery had taken many hours less than expected, that technology and skill prevailed and my face worked exactly as it had before, and that the headaches I had felt constantly for the last few years were amazingly gone. Dr. Kartush happily explained that the surgery went very well as planned and that I should have no residual effects. The only actual pain I remember at that time came from clenching my jaw during surgery. Childbirth was less painful, but I had good friend to massage my head until the drugs returned me to my dreams!
The remainder of Friday remains a blur, but by early Saturday morning, the nurses had me up and moving. I was a bit taken back by all of the tubes and wires attached to my body (especially in the abdomen from the fat extraction), but felt really well. I spent the next two days trying to convince the doctors that hospitals were for sick people and I was not sick. The wounds only ached moderately and the dizziness was subtle. I walked the halls and stairs relentlessly, practiced a few one-legged yoga poses, and even tried slow kick-boxing moves down the hall. By Sunday night, I had proven my case and was given the OK by Dr. Kartush to leave the next morning after a visit from his assistant. Seventy-two hours after surgery began, I was happy and home.
I commend Dr. Kartush’s staff for preparing me well for post-surgery trials and tribulations. Pain was not an issue. Healing pains were sharp, but brief. Dizziness and hearing changes soon became THE issues. Fortunately, I was surrounded by a wonderful cast of family and friends that aided me as well during recovery as they did before surgery. I spent six weeks off of work, adjusting to the single-sided deafness and the loss of balance. (I returned to work at four weeks, but then had vacation for the Christmas holiday.) The recovery progressed smoothly and I was gloriously free of the constant headaches and exhaustion that plagued me before surgery. Within a few weeks, any pain I suffered was mostly self-inflicted from acts of stupidity. Some advice: Be careful of catching the prongs from your wedding ring in your sutures when you scratch your head. Don’t try to walk through the house especially the stairs – in the dark. Definitely don’t engage in an hour-long Pilates class three weeks post surgery.
It’s three months later and life is pretty much normal. The hearing changes from the resulting single-sided deafness continue to be by far the most frustrating challenge. Sound any sound is often annoying to me and it’s hard for others to understand my ongoing preference for quiet. The ringing in my affected ear became grossly louder, despite my belief that it just couldn’t get worse. Lack of balance remains an issue, but, since I don’t mind the sensation of dizziness, it’s largely comic relief. This past weekend, I tried out an elliptical trainer at the mall. I think I completed 10 steps once I got my feet working together. After that, down was up, up was down, and the world was one big Tilt-A-Whirl. I wonder what others thought when they saw me laughing, staggering down the hall like I was walking home from the bar after last call?
After surgery, Dr. Kartush told my husband that I was a real sparkplug. To that, I can only say that a sparkplug alone is useless without a good mechanic to ensure that it is wired and functioning correctly. In the grand scope of life, Dr. Kartush’s interaction with my life, although critical, was brief. Even so, I get the feeling that he is a man who would prefer to live not as a legend, but rather as just a man fulfilling his life’s intentions. Nonetheless, to the hundreds of acoustic neuroma patients that he has treated, and to the hundreds he has yet to treat, legend it is.
I’m realizing that perhaps boring tumor tales are less prevalent on the Internet because those people have no reason to dwell on the challenges. Perhaps they’re all out there, moving forward in their lives, with no reason to look back. I hope, above all, that my reflections give you comfort. They may even lead you to a very capable surgeon. Whatever your circumstances, may God bless you and give you strength throughout your journey.
Patient Story 4 – November 2003
My known experience with an Acoustic Neuroma began on July 2, 2003. On my fourth visit with my E.N.T., the doctor shared the results of an M.R.I. with me that showed a 4 cm sized tumor. For the next two weeks, before I would meet anyone at the Michigan Ear Institute, I did as much internet research as possible. I read story after story of AN patients with several complications as result of having this type of tumor and it’s treatment. I was in disbelief that this was occurring in my body.
Two weeks later I went for an appointment at the M.E.I. where I met Dr. Jack Kartush. The appointment lasted nearly four hours! Dr. Kartush and his staff took their time explaining their history of treatments for AN’s, especially larger tumors, and patiently answered every question we had. One thing that stood out in my mind is that the sensor instrument many doctors around the world use during a AN removal, was invented by Dr. Kartush! I left the M.E.I. office confident of the experience that was before me.
Because of the size the AN was, Dr. Kartush insisted on a two stage approach for not only the removal of the tumor but to save the facial nerves as much as possible, too. I was told I would lose all of the hearing in my right ear and I did. He told me the balance nerves would also be lost on the same side and that I might experience vertigo and unsteadiness. I did not experience any spinning and only a bit of slight unsteadiness.
The surgery took place on Aug. 29, 2003 at Providence Hospital in Southfield, Michigan. The 10 hour long surgery was all but lost time to me. I woke up and could recognize and say the names of my family members who were there. When I was able to do that, I knew I was going to be fine. One of the worst parts of the experience though, was the nausea I had in the ICU. After that, the only effects were sore neck, sore stomach, and the hospital staff poking and picking every two hours.
While in the hospital a physical therapist came by to make sure I could walk. Walking started out with a wide stance and a day later I was walking faster, backwards and up several flights of stairs! I went home after 4 nights in the hospital.
I was happy to be home where each day I grew accustomed to the new me. Two weeks following the surgery I participated in a charity golf outing. With stitches still my in head, I won my first longest drive competition! The guys I golfed with asked me where they could have the same procedure done if that is what a AN removal does to someone’s golf game. In addition to golfing and running in a 10k race, I resumed my full responsibilities as a middle school instrumental music teacher 5 weeks after surgery.
Prior to my surgery I was as nervous as one can be. With just two days until my stage two surgery, I am confident everything will work out and I’ll be back to everything just as I was prior to becoming an AN patient. Dr Kartush, Dr. Pieper, the staff at M.E.I. and Providence Hospital provide the best possible care and expertise for this procedure.
Please feel free to contact me with any questions or issues. The staff at the Michigan Ear Institute is the most knowledgeable and experienced for your care.
Patient Story 5 – July 2003
My name is Michael Nicholls, I was a 24 year old college student at Lawrence Technologic University at the time I learned that I had an acoustic neuroma, which I will call AN from now on. Actually I was just finishing my last class when I learned. I did not suffer from dizziness. I had a ringing in my ear, but I thought that was normal, because it was ringing ever since I can remember, so I did not mention that to my doctor. The only time I really realized that my ears were ringing was at night when the house was quiet. I had hearing loss, bit it was so gradual, that I did not even notice. My sleeping through my alarm clock is what started it for me. I told my allergy doctor, who sent me to an ear nose and throat doctor who sent me for an MRI. After some testing that pointed to nerve damage and a 50% hearing loss, my doctor sent me to Dr. Kartush of Michigan Ear Institute.
MEI has been great from the get go. If I recall correctly MEI called me within an hour from the time that Dr. Rossi called me with the bad news. If I recall it was after hours and I had an appointment with Dr. Kartush the next day. I was put through further testing by Dr. Kartush and MEI after our first meeting in the office. I think my optic nerve was checked, my hearing nerve was checked and my hearing was checked all within a few hours of meeting Dr. Kartush. He gave me bad news on top of bad news which was I would most likely have two to three surgeries due to the size of the tumor which he considered large.
Like I mentioned earlier, I was just graduating from LTU and should be starting my career as an electrical engineer, but that was put on hold for well over a year. I do not recall being overly nervous about surgery and did not read up on it except the pamphlet that MEI gave me, I think because I felt like I was in good hands with Dr. Kartush. This is the only explanation that I can come up with why I did not type, “Acoustic Neuroma” into the search engine and look up all those horror stories. I am very happy that I did not do that until AFTER both of my surgeries, because it would have added to my anxiety. I am not belittling those people that have had such a horrible time with AN, but there are happy stories out there. I am also very happy that MEI is doing the opposite and getting happy stories onto the internet. It is like MEI to be leading the pack and focus on the positive.
My first surgery was on January 17, 1996 eleven days before my birthday and the reason I mention that I had to get my picture taken for my drivers license and I know a lot of people do not like drivers license pictures, but mine was horrible. You could see all the anxiety in my eyes and I did not even know that was there. I was SO happy when I was able to get rid of that driver license, four years later. Anyways, back to the story, and after a long surgery, I think I rolled out sometime after 10:00 pm. I think the surgery began at 9:00 am after some delay with my blood being released. Dr. Kartush told me his fears were correct after I awoke and I will need a second, possibly a third surgery. However he was ecstatic after his first evaluation of me. I had no facial paralysis, no problems with anything he could see. I wish I had a nickel every time I was asked to smile, wink, lift my shoulders, etcetera, because I would be a rich man. The hospital stay only lasted 4 days, without many problems. I think the biggest problem was my roommate. He did not seem that sick and kept me up all night calling the nurses and was not quiet about it. I think he was suing someone and he was on the phone all night as well. I had exactly what I was told to expect. I awoke to vertigo and balance problems and could only walk if someone was next to me. For the next three months I had my eyes closed a lot and just listened to the TV. During these six months there were good days and bad days, but MEI was only a call away. I called MEI often and they had me come in just to put my and my mothers minds at ease. I always felt that I was wasting MEI’s time but they were always so nice and never made me feel that way, actually the opposite.
My second surgery was June 19, 1996, about 6 months later. This surgery was just like the first, but much longer, but the news I got from Dr. Kartush was that a third surgery would not be required. I was very happy to find out I would not need any more surgeries. I think the surgery started at 7:00 a.m. and ended after or near midnight. Dr. Kartush pulled a little longer surgery to finish up, instead of a third surgery. Dr. Kartush had to leave a little piece of tumor or they would have had to sever the facial nerve. The little piece died and fell off which was shown by my first follow up MRI. This hospital stay I think was 8 days. My skull incision was leaking spinal fluid, one of the possible complications. I did not have to have another surgery but I had to have a lumbar drain, which was a needle in my back for 2 to 3 days. The tube was so small that it would not drain properly unless I was on my side, which was the biggest problem. Again I awoke to dizziness and vertigo. I however believe that an extra couple of days in the hospital with some discomfort was a small price to pay for not having to go through a third surgery.
One thing that I would like to mention is that the MEI team was so nice to my family during my surgery. My family has told me that they got hourly updates, even when there were no “big” updates to be given. They were also so kind to me after my surgeries with any questions that I might have had. Most of the time they would tell me to come in even though I felt it was not necessary to do so. I just wanted a little reassurance that everything was going as planned. I always felt like I was wasting the doctors time, but they never gave me that feeling.
It has been 6 years and after some recouping that is required by a major surgery everything is going great. I am very active in charitable works. I just finished my term as Grand Commander (president of organization) of International Order of Alhambra, men’s fraternal charitable group that aid in the care, education and well being of the developmentally disabled by retardation, which we call “God’s Special People”. I am also very active with Drill Team of the same organization. After my year delay my engineering career is in full swing with Alcoa Fujikura Ltd, as a Development Engineer.
Patient Story 6 – July 2003
I need to begin this letter by explaining myself. Every visit since my first surgery, I have promised I would write this. My problem is, that it is so hard to put into words the emotions that I have.
It all began the last weeks of May 2001, which was also the last weeks of school for my children who always come first with me. I must tell you that My family and I had lived in Ohio for 10 years and I didn’t have a family Doctor. I was just never sick. My family had been noticing a slight hearing loss when we were in noisy places. Of course I thought it was an ear infection. I had also been experiencing numbness on the left side of my face and the left half of my tongue. I was very scared, but sure it would go away. It took a frightening phone call from my husband explaining that his coworker’s wife was just diagnosed with a brain tumor and she had some of my same symptoms that I had. Needless to say, after a night of no sleep, I started trying to get in to see a Doctor. in my town. I found no one who would see me. I tried explaining that it may be something serious. They suggested I go to the emergency room or our med. center. I saw Dr. Canfield at Physicians Plus in Findlay. She ordered an MRI which revealed a “brain tumor.”
One of the worst parts of the whole ordeal for me was the waiting. I finally got in to see Dr. Sean Logan who had also seen my husband’s coworkers wife. I was told I had a 3 cm Acoustic Neuroma. The same tumor that she had. Dr. Logan gave me the names of 2 doctors that I could choose from and truthfully, it made me feel better that someone was going through it before I was.
I wish while I waited for my appointment at Michigan Ear institute, I would NOT have looked on the internet at the horror stories. I have noticed that those of us with success stories, are so happy to be back to “normal,” that we don’t take the time to write.
When I finally had my appointment at MEI and met Dr. Kartush I knew that I had chosen the right Doctor. When I was in his exam room, I was the only patient who mattered. He made me feel that he was the best and I knew he would do my surgery. He explained everything to us in detail. We were told that it would be a 2 stage surgery. Keep in mind, I was still terrified. After all, it IS brain surgery. I had only been in the hospital to have my children.
On my pre-surgery visit, I took my daughters to meet Dr. Kartush. He spent time with them. so they thought he was wonderful too. I asked for some medication for my nervousness, but after talking to Dr. Kartush, he reassured me that he was the best and I didn’t need any medication. I was calm and just wanted it over.
The morning of my first surgery, Thursday, August 9, I was ready to get it over with. During my 9 hour surgery, my family was kept well informed. It helped them a lot while waiting. Dr. Kartush’s nurse was very caring and informative with them.
After surgery, I spent the night in Intensive Care and was put into a regular room the next day. Now, you must know that I am a little (maybe a lot) on the stubborn side and I think that helped me a lot. I was told that I needed to walk and do my exercises. SO– I actually wore holes in my socks walking the halls. I finally got to go home on Monday, August 13.
Remember the stubborn thing? Well, I was out of the house within 2 weeks. I still had a slight balance problem, but I kept up with the exercises. I did lose all the hearing in my left ear and my left eye is dry, but I feel they are small things to lose when it could have been my life!!! My second surgery was Thursday, December 6 of the same year. It was harder going in to the hospital a second time, but the recovery was much easier. I was asking to go home on Saturday. I wasn’t allowed to, because we live 2 hours away. Once again, I was sent home on Monday. Within 2 weeks I was back volunteering at my child’s school.
I feel Dr. Kartush saved my life and he’s the best! I have talked to a few of his patients who have called to ask about my experience. Please feel free to call or e-mail me at SHOPGQUEEN@aol.com. I was in contact with an earlier patient myself (Thanks, Connie) and she told me some things to be aware of also.
Patient Story 7 – March 2003
My name is Ray Goodman, some of my friends call me Sugar Ray, and I am 60 years old. I am employed as the Safety Director for Michigan’s oldest and largest sugar company – Pioneer Sugar. Part of my job involves the annual hearing tests for 1200 employees. So I was surprised when the hearing in my left ear began to drop off significantly about five years ago. I always wore the appropriate hearing protection in the factories, while shooting and operating a small sawmill and woodworking equipment. The hearing loss continued to worsen until even a hearing aid afforded me no help. My family doctor referred me to a hearing specialist in Saginaw – Dr Mark Scharf.
Doctor Scharf conducted all the standard hearing tests and finally ordered an MRI to rule out an acoustic neuroma. The results came back positive for a 2-3 centimeter tumor that projected through the auditory canal and was beginning to deform the brainstem. Dr Scharf told me he personally knew the most accomplished surgeon that could perform this complicated and sensitive procedure. Dr Scharf looked me in the eye and said that if he or one of his family had the same condition, his only choice would be a doctor that specializes in the condition in Southfield – Dr. Jack Kartush.
Dr. Scharf made an appointment for me that was about two months away and I began to become what is probably the classic acoustic neuroma patient. I perused the Internet and read the accounts of numerous surgeries that had gone awry. It did not take long to become rather concerned that this surgery could leave me with some very serious conditions. Thankfully I had a great family of prayer warriors and fellow church members that would prove to be a humbling and uplifting gift from god. I received dozens of cards and letters concerning the possible surgery, and later, the recovery.
The appointment date finally arrived. After a very thorough examination and history, I was finally going to meet this person who was becoming “larger than life” with each succeeding conversation I had at the MEI facility. Doctor Kartush began the conversation by showing me my MRI. He explained the different views and exactly where the tumor was on the film. He went on to explain the actual surgery and how he would avoid the things that could go wrong. One thing stuck out in my memory of the exam. This man had for some reason decided to become not just a great surgeon, inventor, and musician, but an expert among experts. A person who broke each task, each segment of the surgery down into it’s lowest common denominator a true perfectionist. He not only perfected the surgical technique, but he know how the patient felt preop and I would come to find out how each aspect of the surgery would affect the patient postop. I would call him a “master surgeon”, someone who must have had an infinite amount of patience and caring for his patients to have given so much of himself to achieve such a level of success.
My surgery was scheduled for Friday, March 7, 2003. The Providence Hospital is the most organized and friendly place you can experience. I check in at 6:00 a.m. and was ready for surgery around 7:00 a.m. I made my peace with God and the IV began to flow. I woke up in the ICU about 6:00 p.m. Several doctors including Dr. Kartush stopped by and told me everything went well. “Textbook Surgery” one related. I had no pain at all. There were balance problems, but these were expected and they go away with time and exercise. I was feeling well enough to go home Monday and was discharged accordingly.
As my wife and I were driving away from the hospital on the 10th, an old pastor friend called on the cell phone. She asked me how I was doing and told me she had kept me in prayer and just knew I would be OK. I started to cry, guess it was a great build up of the uncertain thoughts associated with the surgery that I could now release. How lucky could one person be? Finding the best surgeon and staff one could ever expect, having the greatest group of friends praying for your surgery and then your recovery, and knowing the greatest God who puts out his hand and makes all this come together…did I mention my wonderful wife Peggy who took care of me for three weeks.
Doctor Scharf removed the sutures on March 21st and after seeing Doctor Kartush on April 1, I returned to work. My wife drove me that first week, but my balance and my confidence were good enough for me to start driving on April 7th, exactly one month after surgery. On April 22nd I had recovered enough to be practicing rescue techniques with our company rescue team – 50 feet in the air. Thank all of you from the bottom of my heart.
Patient Story 8 – November 2002
In April 2001 after consulting with Dr. D. Ortize (ENT Physicians Inc. in Toledo, Ohio) with a constant pulse sound and a plugged feeling in my left ear a MRI was ordered of my head.
On May 8, 2001 my second visit to Dr. Ortize and the reading of the MRI showed nothing with the left ear but an acoustic neuroma of the right ear. I had no symptoms of any sort. Dr. Ortize recommended Dr. Jack Kartush at MEI as “the doctor he would go to personally if he or his family were to have this tumor (acoustic neuroma)”.
May 22, 2001 my first visit to Dr. Kartush took place. A nurse and dear friend of mine accompanied me for my office appointment. We both had many questions which Dr. Kartush and his staff were more than willing to answer. I was given information to read and was encouraged to have all the questions I had answered. I left the office with a positive feeling about my prognosis and we were impressed by the MEI staff and their professionalism. My friend told me upon leaving this visit “God sent you to the right doctor to take care of this problem” and I agreed.
A second MRI was taken in July and on July 19, 2001 God blessed me with a successful surgery at Providence Hospital by Dr. Kartush and his assistant.
A small tumor, about the size of 1/2 my little finger nail was removed in a 7 and 1/2 hour surgery. I have no facial nerve problem, no hearing loss and minor balance problems (which was taken care of through therapy) as the tumor was so small and confined to the tunnel area, thank God. I am a diabetic and Dr. Kartush had an internist look after my diabetes since I am from out of state.
The day after surgery I was up and walking the hall with aid and I was off balance. I had little pressure at the surgery site and was dizzy. I was hospitalized for 4 days and every day, with the therapy, I was getting better. When I was discharged I was still a little dizzy and needed a little help walking (balance) but every day I did my balance and eye exercises and saw much improvement. After 2 months from the surgery I was back to work as a part time cashier and doing great.
December 3, 2002 at my 4 month check up I had no hearing loss in the right ear and healed well at the surgery site and was back to doing all things as normal.
I am grateful to God for the knowledge and skill he has given to Dr. Kartush and his staff.
I am here, November 2002 to see Dr. Kartush for my 1 year check up with my latest MRI and all is well.
Patient Story 9 – February 26, 2002
My name is Richard Maike. I am a 53 year old who enjoys boating, cross-country skiing and working in my yard.
In November of 2001 after years of nagging, by my wife of 33 years, I swallowed my vanity and went to Dr. Raymond Komray of the West Michigan Hearing Center in Muskegon with the idea that I needed a hearing aid. Thanks to Dr. Komrays’ thoroughness, the diagnosis was an acoustic neuroma, about 1 inch in size. Other than a hearing loss in my left ear I had no other symptoms of my tumor.
Dr. Komray referred me to Dr. Jack Kartush at the Michigan Ear Institute. A referral for which I am extremely thankful.
Dr. Kartush, Dr. Pieper, their staff and the staff of Providence Hospital treated me like I was their only patient and spent whatever time I felt was necessary to discuss my options, surgery and recovery concerns.
The fear of the unknown between that day in November and January 17, 2002, the day of my surgery, was mentally devastating. This was to be my first stay in a hospital. I became extremely depressed and very anti-social. That all went away the moment I woke up from surgery.
I had my surgery on Thursday January 17, 2001 which lasted about 7 hours (so they tell me). The first thing I remember is waking up in the ICU to the voice of Dr. Kartush telling me I hit a home run. The tumor was completely removed, cancer free, and I had no facial palsy, I did lose the hearing in my left ear as a result of the surgery.
Friday morning they removed all the tubes and gadgets and then I ate all my breakfast (cream of wheat is not my favorite meal). After breakfast I was able to get out of bed on my own and go to the bathroom unassisted (a move the ICU nurse did not appreciate). Dr. Pieper visited me and was amazed by my quick recovery and progress. I told him that I believed recovery from surgery was mostly mental and he somewhat agreed. I had no nausea, dizziness and no significant pain. After lunch, I was moved to the surgical ward.
Saturday I walked every hall and stairway I could find on the floor. Although I could not walk in a perfectly straight line I never hit the wall once. Dr Pieper visited me and told me that I could go home Saturday morning, if I wanted to and I did.
After a week at home, I was ready to climb the walls from boredom. I was tired of cooking, washing clothes and dishes. I needed to be set free. This was not to be. I developed a little infection, which caused some minor facial palsy, however this all went away in about a week, with the help of a couple of prescriptions. My wife hid my care keys for three weeks (after Dr. Kartush suggested that I not drive immediately) and would not let me go anywhere alone. I felt like a little kid. After a couple more weeks, she did allow me to go to work for a few hours a day, if I could find a ride.
Four weeks after my surgery, my wife and I went to the Boat Show in Miami Florida. I flew on a plane and went out in the ocean on a boat, with no side effects of any kind, except my sea legs aren’t what they used to be yet.
Today, I had my six week check up and received what I consider a clean bill of health; with the only restriction remaining from Dr. Kartush, is no bungee jumping. He told me that he would see me in about a year for a follow up.
As with all good stories:And they lived happily ever after.
Patient Story 10 – May 2001
Hello! My name is Debbie Van Gemert, I am a 38 year old mother of 2. Prior to my surgery I led a very active lifestyle; golf, skiing, scuba diving and roller blading. Like anyone that is diagnosed with a AN I was terrified. I needed to know everything there was about the tumor, the surgery, recovery and quality of life afterward. This need to know led me to the internet where I found many disturbing stories about how peoples lives had changed afterward. Unfortunately there were very few success stories to be found. I am sure these peoples accounts are sincere and I feel deeply for them. However, my surgery was a complete success.
My tumor was medium size and I chose the vestibular approach to surgery. This meant that I would lose the hearing in my right ear. But the risk of facial paralysis and brain damage was greatly reduced.
My surgery was April 9th, it took 9 1/2 hours. I was home four days later. The first week I experienced minor balance problems. Mainly when I made a rapid head turn or got up and down quickly. I had some minor headaches, that I was able to control with Tylenol. Two weeks after the surgery I was at the golf course practicing my short game, and at three weeks I was playing nine holes of golf each day. It turned out to be great therapy for the balance problem. The first few swings were a bit unsteady, but with each day it got better. My first few scores were about 10 strokes higher than normal and my biggest problem was stamina. Even riding on a cart I was exhausted by the 7th hole.
Six weeks after the surgery I attempted to roller blade. As long as I looked straight ahead I had no problem. Just don’t try to look behind you. It is now mid September and my golf game is back to it’s 18 hole handicap of 9. I actually play a little better than prior to the surgery. I also returned to work after six weeks. The first two part time and by the 8th weeks I was back full time.
I attribute the success to my surgeon, Dr. Jack Kartush, of the Michigan Ear Institute. He was wonderful! It also helped to stay active. I am a very active person and swore this would not affect my quality of life. I probably rushed the recovery a bit. This made my family very nervous, but my doctor was very supportive and told me to continue on as I was. He had no concerns with what I was doing as long as I quit the activity if I experienced any headache or fatigue. I am certain it was my determination to get back to a normal lifestyle that enhanced my recovery. I won’t lie. It wasn’t all rosey. I had good days and bad days. The first few days in the hospital were a little rough, but by the third day I was wobbling down the halls and eating. It is a little strange not having any hearing in the right ear. You loose your sense of direction. Every sound seems to be coming from my left side, and I have some difficulty hearing conversations in crowded, loud rooms, but I am adjusting.
Patient Story 11 – May 2001
It is nearly 1 year from my second surgery (I required 2 surgeries for complete removal of a 5cm tumor). I am very pleased with the results of both surgeries. I did lose all hearing on my right (tumor) side and I do have a slight distaste in my mouth. I had no facial paralysis, no problems with a dry eye, no real balance problems (occasionally when very tired) and suffer very few headaches. It seems that my headaches come with drastic changes in the weather or when my sinuses are bothering me (possibly they don’t even relate to my surgery). My surgeries were performed by Dr. Jack Kartush of the Michigan Ear Institute (Farmington Hills) at Providence Hospital. The team of doctors was the best and the hospital staff was very accommodating, which was a great comfort considering we were 4 hours from home.
My follow up MRI is scheduled for this week and I truly do not anticipate there will be any problems. I couldn’t have asked for better results and am very grateful and thankful for where I am now. When I was first diagnosed and during that time prior to surgery, I was petrified. A lot of the information I received and read on the Internet reflected the many problems so many patients experienced and they weren’t very encouraging. If you are out there looking for information, keep a positive attitude and find the treatment and doctor that is best for you. Seek the advice of a doctor that is experienced in this procedure. This site has been a real help to me, both before my surgeries, during my recovery and continues to be a site I frequent. I hope I can be of some help to any of you that have questions or that need some words of encouragement. Please feel free to contact me.
Patient Story 12 – March 2002
My name is Linda, I am now 58 married 38 years with a daughter, son and two granddaughters. My story starts with the birds in July, 1999. I was lying in bed with the window opened enjoying the quiet morning when I rolled over on my right side and could suddenly hear the birds singing. I remember thinking, how strange and rolled back over and it was silent again. I had my husband talk to me when I laid on my good ear versus my ‘bad’ ear and since I could hear him the same, I wasn’t too concerned. I did want to check it out and since we recently had moved would have to find an ear doctor.
Three people at work suggested the same ear doctor but I waited and finally made an appointment for October. I went in to make sure there wasn’t something to be done to prevent more hearing loss. He did a hearing test and an ABR, an Auditory Brainstem Response, which I failed. He then sent me for a MRI which I had on November 15th and after work the next day there was a message from the doctor and I knew something was wrong. I called back and heard the shocking news that I had a growth on the hearing nerve and it was called an Acoustic Neuroma, was usually non-malignant, and that it had to come out. He was sending me to one of the best specialist in this field, Dr. Jack Kartush from the Michigan Ear Institute.
We saw Dr. Kartush on November 29th and liked him immediately. He showed us the MRI films and explained that the size was about 3CM, that it had grown through my brainstem and attached itself to the brain sharing some of the same blood vessels. The tumor was pressing on the part of the brain that controls breathing, blood pressure and heart function. I would lose hearing and balance in the right ear. Dr. Kartush thought that the tumor might have to be removed in two surgeries giving the facial nerve a chance to heal and a better chance for less complications. Surgery was scheduled for December 16th and I was beyond scared. My family and friends gave me a lot of support.
The surgery lasted about 9 hours, 80% of the tumor was removed and the facial nerves were intact. It’s hard to find the right words to thank Dr. Kartush and his team.
Complications vary for everyone and it was a difficult time to work through but eventually I did get better. I had a weakness of the right side of my face and had double vision because my eyelid did not close but this got under control with eye drops and my eyelid got stronger with facial exercise. Therapy was shown to me at the hospital and continued at home which helped any weakness and balance problems. I have a numbness on the lower right jaw which feels like you do when a dentist freezes your teeth. This numbness was lightened and I feel fortunate for all the improvement I do have. The second surgery was done May, 2000, it was a success and I had no other complications. Having lost the hearing in the right ear takes getting used to and I do lose my balance sometimes.
At first I thought not hearing the birds was the only symptom I had but thought back to all the doctor visits for occasional dizziness, for heart palpitations, breathing and balance problems that I had off and on for years. The different tests would always be negative and the problem would go away for a time. I blamed some of this on stress, menopause, and just growing older. I believe some of these problems were because of the tumor. If I can help in anyway please contact me and I hope my story encourages and gives hope.