One of these two doctors was my psychiatrist. I had seen him on and off for years. He wrote me several scrips for medications to deal with the mysophobia. We didn’t realize that no medication would cure the mysophobia, because the phobia was caused by a brain tumor.
In the end, the psychiatrist was the doctor who wrote the scrip for the MRI, but I think he did it in an agitated way.
“I’m sure you’re fine, but you’ve complained about headaches for so long, so there it is,” he declared as he banged his prescription pad on his lap while sitting in a chair next to me while I was crying and holding my head. The headaches were so bad at this time, spring 2009, I could hardly take it anymore.
The general practitioner (GP), a doctor I had gone to for years, to whom I had also complained numerous times about my pain, had not written an MRI scrip because he too believed the headaches were caused by the meds for my germ phobia. Instead, he gave me a scrip for physical therapy head massages, which, of course would have no effect on a brain tumor. When this GP retired, after my brain surgery, he gave me my medical folder to bring to a new GP. I looked up how many times I had complained about headaches over those years. I counted the complaints, and there were more than ten.
This reminds me of what happened in the comedy movie Kindergarten Cop. When Arnold Schwarzenegger, a detective playing a teacher, complained to the kids of a headache, one of his kindergartners says, “It might be a brain tumor.”
If anything is to be learned from my story it is this: INSIST on procedures to rule things out when you’re not feeling well. Your symptoms may be caused by the meds you’re on, but as I learned TOO late, something else could be brewing. The toll of that undiagnosed brain tumor is my life being forever changed!
The psychiatrist apologized to me twice. I know it’s rare to get an apology from a doctor, but I did. As soon as I found out about the MRI results, I called his office to tell his staff I was being sent to NYU for brain surgery. I called them when the surgery was over. I wish I could have seen his face when his receptionist told him there really WAS something wrong with me.
The GP was not so apologetic. He never owned up to being any part of this mistake. As a matter of fact, at my last appointment, after he had given me my very thick file folder full of normal doctor notes, but also FULL of headache complaint notes he took, he literally patted himself on the back for being so good with me. This has also been hard to forget….
I have been told over and over again by so many other people that I should have sued both of these doctors. I just couldn’t do it. That’s not who I am….
I even discussed the diagnosis delay casually with a lawyer once, and his response was, “You’re worth millions,” but I did not pursue anything.
I just wanted, and still want, to let go and move on.
I hope this is well worth a space in your column, as you stated to “Gentle Reminder” on 2/25/12 about her/his work in a doctor’s office and comments about patients. I have to state the things I've observed in SEVERAL doctors’ offices since I had a massive brain tumor removed and all I do now is go to doctor appointments near and far. What people who work in those offices need to remember is that, unless we are there for a routine yearly checkup, fear and anxiety are within us because of something possibly wrong within our bodies. Coldness and abruptness by staff is upsetting because we need some form of love and concern. Even though it's their job and they can go home at the end of the day, we might have to leave knowing bad news, so please – be nice, at the very least.
Many offices need TONS of paperwork completed before we arrive or when we do, so when we are taken from the waiting room, why do we have to answer so many questions about the information that we just handed in? Nurses grill us and then the doctors do, too. It would be helpful, if we take the time to fill it all out, that we get it read by all first; along that same line, why do we have to re-state all of the meds we are on, when we just handed you a sheet with all of them listed on it? I've asked both these questions in several offices, and I usually get told it's “routine procedure.”
Now I'll move on to the phone calls to the offices: all of the buttons you have to push just to be able to leave a message, but then have to wait and wait for whatever information you need to take care of is very frustrating! Remember the old days when the phone was actually answered by a live person, and phone tag didn't take place, so you got your help in a reasonable amount of time? Similar to that – what about when you try to schedule a future appointment, but their computer can only do a few months in advance, so you have to call back in a few months, instead of doing it the old-fashioned way by turning the large schedule book pages so that you were able to leave the office knowing exactly when you would return?
And what about the HIPAA laws that are not followed? For example – doors left open so you can hear others’ discussion and they can hear yours? Or – they ask you private questions as they walk you back to your room, so strangers in the hallway can hear your answers. And – walls so thin in some offices that, as you sit and wait to see your doctor, you can hear them in the next room discussing that patients’ issues. I find this completely unacceptable!
And finally – when you try to schedule an appointment at a time you can arrive by, the staff tells you it HAS to be 15 minutes sooner, so you reschedule something else you are involved in, but then when you arrive on time, you wait for a LONG time to be taken in, and you could've come when it was more convenient for you. This happened several times to me in a certain office, and when I finally said something about it, other patients that I didn't even know started to clap when they heard me commenting about it to the receptionist, so obviously others felt as I did. I know some of that could be due to others’ being late for their appointments, but some of it could also be over-scheduling.
Well, I think the staff in doctor offices will disagree with things reported here, but since we read one writer's thoughts back in February, I thought the other side was fair to state. That's it for me, though I wonder if other people have more that they could add to my list from their own experiences. I am curious if I am the only patient who feels this way, or do others agree? Thank you for letting me vent, Abby!
I guess it’s because of the HIPAA law, but when I call the doctor’s office, often they ask me first for my date of birth. To make a point, I give them my name and then my date of birth, to feel like a human and not a number.
Add to these the annoyance of being reminded by an automated call of the date and time of an appointment, but not which of their several locations they expect you at.
One doctor’s receptionist, who knew I was very detail-oriented and whom I had already corrected once, gave me an appointment card reading “Thursday, June 16, 2 a.m.” When I pointed out to her that it should be “Tuesday, June 16, 2 p.m.,” she jokingly got another office worker to make the new appointment card out, saying it was because she did not want to be in my upcoming book twice!
It's not only the behavior of doctors I object to, I believe our system of health care for the disabled and elderly is so broken in America.
I've witnessed in numerous nursing homes, assisted-living facilities, and homes with paid caregivers, patients being treated too slowly, rudely, or lazily.
When some of these workers are late for work or back from their breaks late, they speed unsafely and run through stop signs to get back on the clock on time. I live near two facilities for which this is a daily occurrence. You take your life in your hands when you're driving correctly near them. I don't understand why they're pulling into their job's parking lot two minutes before their shift.
How about setting your alarm 15 minutes earlier?
I know this late thing happens for all of us sometimes, but there are several workers that get it wrong daily (and by “wrong” I mean driving like a maniac to punch in on the time clock on time). I'm pretty sure this happens at a lot of care facilities, and it's not fair to people who live in the neighborhoods near them.
Another mistake that took place in a doctor’s office happened when I was going for an endoscopy.
I had learned a couple of years earlier that, since my brain operation, the medication propofol really gets me “worked up.” I learned that after the first endoscopy, and I went “bonkers” in the room after it was all over. So, I had put on my medication sheet the words, “No Propofol.”
As I was about to get the needle for this second procedure, I said to the nurse, “That's not propofol, right?” She said that it was. I pulled my arm back and yelled, “Does anyone in doctors’ offices read what is written on the notes we fill out and then turn in? I can't have that med!”
Then, the anesthesiologist came in, told me I was wrong and that he couldn't do the procedure without it. I told him to go look it up and come back to tell me what he learned.
He came back sheepishly and admitted that I was right, and he could only use with me a very small amount of it, mixed with some other med (whose name I can't recall) to knock me out, so I would “wake up” in better shape than the last time.
So, it all went better after that, and he met me in the lobby, as I left, to ask if I was okay. I'm sure he was more concerned if I would let others know he instructed his nurses to give me something that, in writing, it stated I wasn't supposed to be given. I'm just very glad that I asked that nurse what was in that injection, because otherwise, even more outlandish behavior could have taken place again.
Patients, for the most part, know themselves better than staff does. Listen to us better if you want our trust, and more than that, our business!
As I mentioned at the beginning of this book, Dr. Tamai was the neurologist who had to tell me I had a brain tumor. She was on call at the place where I had my very first MRI. She’s the first doctor who told me the mysophobia was probably caused by the tumor.
I see her regularly to this day, every three-to-four months, at what is now called Healthquest’s Division of Neurology, formerly Kingston Neurology Associates. She has listened to it all, from my stories of my crazy rampages to my in-office bouts of uncontrollable tears, etc. She counsels me as well as gives me neurological check-ups. She is the most sensitive doctor I have ever known, and I tell her that as often as I remember to.
Recently, Dr. Tamai was quoted as saying, “What’s most rewarding about my job is being able to really help a patient and know that you’ve made a difference in their quality of life.”
And, she has really helped this patient! My quality of life is improved because she listens to me and helps me figure life stuff out. [And I think her nurse Bridget is fabulous too!]
Each Christmastime, I buy Hallmark’s doctor ornament of the year and give it to Dr. Tamai with a card that expresses my appreciation for how wonderfully well she takes care of me. Words in a card and an ornament could never really match the way I feel towards her. She is a present from God for whom I will be eternally grateful. I highly recommend her to anyone in need.
Another doctor who has been wonderful with me is Dr. Pappas, my ophthalmologist. She works for Caremount, formerly the Mt. Kisco Medical Group, and I see her regularly to have my eyes checked. These appointments are very nerve-wracking for me because the tumor was behind my left eye, and I fear it may re-occur.
The mistake I made, back when I had the tumor, was that I went to an optometrist only. I found out later that if I had been seen by an ophthalmologist, he or she would have been able to spot my tumor with the special tests these medical doctors use. Optometrist appointments are not the same, and therefore never detected the tumor, though I went for new glasses regularly.
Once, after my brain tumor surgery, a nurse in Dr. Pappas’s office was checking my pupils with a special light. She commented that something was different when she peered into my left eye versus my right eye. She went and got another nurse, and the second nurse used a different light, but said the same thing. I freaked out in the chair because I imagined the worst! Over and over in my head I kept thinking: the tumor is growing back.
Once I became uncontrollable, the nurses went quickly to get Dr. Pappas, who left another patient to come into our room and look at my left eye herself. She said that her examination light was better and that everything was fine. I’m pretty sure she spoke to those two nurses in the hallway about treating me with kid gloves because of how overly sensitive I am about the tumor’s reoccurring. Dr. Pappas is very sweet and gentle with me.
Another caring doctor who comes to mind is Dr. Keller, who works for the Hudson Valley Foot Associates. Back when I had the undiagnosed tumor and I was so fearful of germs, he would wash up in front of me and put gloves on. I needed him to do this. His staff were friendly and considerate of my special needs. I highly recommend his office for care and concern about one’s medical needs.
Another wonderful medical professional is Karl Kruszynski, P.A.-C., a physician’s assistant who has helped me with many skin problems in the two offices where he has worked.
Karl is humorous and a great listener. Most staff at his new office, “Hudson Dermatology,” are very friendly and accommodating to what I refer to as my “award-winning personality” – i.e., I’m a real pain in the butt sometimes.
I am absolutely petrified of needles and, of course, they need to be used when biopsies are taken. I have had several skin cancer episodes, “thanks” to not listening to my mommy as I child, when I was told to put on sunscreen, and then as a 20- or 30-something-year-old using a tanning bed!
Karl always smiles through my “episodes” and is still warm and friendly the next time I come back for more.
In the office where Karl worked at first, I met a doctor before I met Karl. Her name was Dr. Wendy Epstein. To this day, though I no longer see her because she left that office, I have a fond memory of her:
I was in my hospital bed, a couple of days after my brain surgery at NYU. She spoke with me over the telephone to see how I was doing. I was so touched that a doctor who only saw me for my skin conditions was a doctor who took the time to check on me like this. How many doctors can you say that about anymore?
An excellent chiropractor that I have to mention here is Judith Dougan. I met her when I hurt my back (the story in my “Music, Music, Music” chapter). She and her assistants (Vicki, Jackie, and Linda) all helped me feel better too.
And, finally, another great doctor is Dr. Jafar Jafar, the doctor who removed my brain tumor and used it in a class at NYU Langone Medical Center to teach others. Many people have asked me why his first name is the same as his last. I was curious, too, about why his name was like that, but, most importantly, I just cared that he saved my life.
Dr. Jafar is a neurosurgeon with the cleanest doctor’s desk and office I've ever seen. At my first appointment after being released from NYU, I was embarrassed when he had to tell me to wash my hair as soon as I got home. Right after the surgery, I had been so scared to touch my head with its 42 stitches that I couldn't do it, but after he said that, I went home and lathered up.
Dr. Jafar will always be the doctor who told me my tumor was the size of an orange. But, more importantly, he will be the doctor who told me I would no longer be afraid to shake hands with him, after he operated on me, since my fear of germs would be over. He was right!
Focusing on the positive is truly a struggle for me. I talk to God every time the bad doctor memories become overwhelming, which is way too often. Praying sometimes brings relief. I look forward to the day when I’ve completely moved on. In the meantime, I take baby steps in the land of forgiveness….
BOOK TALKS AND SIGNINGS
Janet Johnson Schliff spoke at 1 p.m. on Saturday, March 3, at Barnes & Noble, 1177 Ulster Avenue, Kingston, NY.
She spoke at the Golden Notebook Bookstore in Woodstock, NY, at 2 p.m. on March 17.
She spoke at the Morton Library in Rhinecliff, NY, at 6:30 p.m. on March 28.
She will appear at RCAL in Kingston, NY, at 4 p.m. on April 3. I hope to attend.