When your doctor is scarier than learning you are going blind.

photo of Dr. Jekyll and Mr. Hyde fictional book characters.

2-21-2013- went to Jules Stein today. The last time I was here was December 17; two days before my left shoulder replacement. What a nightmare this visit was!

Background: the visit 12-17, Dr. Schwartz yelled at Hubby for opening the door to the doctor’s area after we had waited in the room for several hours. His outburst was very unsettling; I’ve never seen a physician go off about something so minor. I thought we were past that episode and I was fully ready to chalk it up to a bad day or a one-time misunderstanding but I could not have been more wrong. Clearly, this guy has some deep-seated issues and struggles with anger management.

I was supposed to also go for genetic counseling, because Dr. Schwartz insisted on it at my last visit. However, the genetic counselor was sick and would reschedule my genetic testing / counseling.

Mom, Dad and I left the house aroudnd 10 am. Thankfully, traffic was not bad. We got up to UCLA early so I could get my anti-retinal antibody test done that was ordered at my December visit before my appointment. The test is rare and needed to be sent out but there was mass confusion about which tube to draw the blood in and which send-out lab to use. The lab supervisor said they had never drawn this lab and needed to research so we went and had lunch in the cafeteria while the lab sorted it out. Marcella was the lab manager and she figured it out. I got my blood drawn and it turns out it had to be sent off to Mayo clinic back east.

My appointment with Dr. Schwartz was at 1:00 and we arrived on time. At about 1:15, was called in to have tests by the ophthalmology technician. She did tests I’ve never had a ‘honeycomb” pattern. Then you tell the technician which letters on the eye chart you can see and which ones you cannot. I could not see ANYTHING when i held the paddle over my right eye and it alarmed me. I asked her if I was “supposed” to be able to see through it and she said yes. When I said I only saw shapes but not make out the letters on the chart, she wrote that down and made me repeat it on the left eye. I could see a little with the left but not much. It scared me about how little I could see and started crying when I saw my mom and dad’s faces as I kept “failing” one test after another. I started crying and begged her to explain what the test was testing for, and what I “should” be seeing if I had normal eyes. She seemed annoyed I was asking so many questions and told me “it will all be okay”. Then said my doctor would tell me the results and sent us back to the waiting room.

About an hour later I was put in an exam room and a stream of residents would come in to examine my eyes. I had gotten used to having several people look in my eyes so they can learn. The resident let us know Dr. Schwartz had three patients in front of me so the wait would be “a bit longer”.

Approximately 4:30 pm- after waiting 3 ½ hours, my mom found Mike, the manager of the office and complained about the wait times. She was incredulous how the staff and regular patients just become accept the 4 and 5 hour waits and told Mike how unacceptable it was that they are letting vulnerable scared patients wait so long. She told him they did not know how to schedule. She then told him about our experience with the technician and said I the tests repeated because the technician did not explain to me what to do and I was petrified that the test had found ANOTHER thing wrong since I could barely see during it. He assured us that the tests would be repeated and we would have answers at this visit.

About 20 minutes later, Dr. C, , the Fellow who works under Dr. Schwartz re-did all the tests. He pulled up visual field test results from last visit and interpret ted the results to us. My VF (visual field) was less than 10 digress when it should be 60-80. The tests were easy when he explained that the “spectacles” I was looking through tested the acuity of my remaining vision. He said the test told them I would benefit from a refraction with a low vision optometrist. I asked him who to go to and had he said he had to ask Dr. Schwartz who he wanted to do the refraction. He also said I did “excellent” during the testing. I told him I was “excellent” because it was easy to do the test when he explained why, what and how of the test.

I found it ludicrous that a Fellow had to ask permission to give me the name of Jules Stein’s optometry clinic. I questioned Dr. Schwartz’ effectiveness as a mentor to Fellows and Residents if they have to “ask” if it was okay to just give me the name of a low-vision Optometrist

My interactions with Dr. C. were the OPPOSITE of those with Dr. Schwartz. Dr. C. was EXTREMELY helpful in explaining things. He answered a good number of our questions:

  • After the exam, Dr. C. told me I had very dry eyes and needed to start using artificial tears. He said it would make my eyes feel better and might improve my central vision a little.
  • I told him I was not able to tolerate the Diamox and asked him what it was prescribed for. He said it is because I also have Macular Edema. Since Dr. C. was at all of my visits, I asked him if Dr. Schwartz ever told me about the Macular Edema and I forgot. He confirmed that I was not told about the macular edema at previous visits nor why I was prescribed Diamox. (Later, when I got my records, I saw Dr. Schwartz had not documented he prescribed Diamox NOR the Macular Edema at my previous visits! (Note: A physician not documenting that the presence of Macular Edema NOR the Diamox he is treating the condition i malpractice in my opinion.)
  • When reviewing my med list, I explained that my Prozac dose was doubled after my last visit as I was struggling with dealing with the diagnosis. He was very reassuring and said “You have handled it VERY well. Better than most.”
  • Genetic counseling – can be helpful “if” you want to KNOW what the cause is.
  • Mom asked what the Anti-retinal antibody test was for. He said it would tell us if there is an auto immune component to my disease. He would call me with the results when it came back. IF it were positive, the treatment is to shut off my immune system to it stops attacking the retina with a drug like methotrexate. He said when we got the results back, we would go from there. Unfortunately, I never got that call. I did not know the test was negative until I received my medical records a couple of months later).
  • Dr C. was extremely helpful and reassuring. He gave my mom the number to call if we have any additional questions. He explained that he took call most of the time so regardless of what number we called, it would likely be directed to him.
  • My mom asked him for his best guess on how long I would be able to see and he said they do not know. He was reassuring that although I had a severely limited visual field, the vision I do have is very and was certain I wasn’t going blind this year, not in 5 years and possibly not even in decades, if ever. He said they would know more after they monitored me for a while.

Then Dr Schwartz came in the room through the infamous “back door” that he had raged at my husband for opening at my December visit. (STILL NO SIGN ON THE DOOR STATING “STAFF ONLY”.) He seemed extremely agitated when he came entered and he never stood in front of me. He stood at about a 45 degree angle behind my right shoulder and I had to get out of the exam chair or rotate my body in the exam chair to see him. ANOTHER red flag:

The Chief of the Retinal Division does not know that a patient with no visual field stands OUTSIDE of the patient’s visual field ?!?!?!

He asked if my vision had changed and I replied that I didn’t notice physical changes; just that I was slowly coming out of denial and paying more attention to my limitations. I told him that I now recognize that I was falling because I couldn’t see details like on stairs and that adjusting from dark to light or light to dark situations were also challenging. He said “Your vision was a little worse than the previous visit.” I was 20/20 in December and now 20/30-20/40. He said it was due to dry eyes and makeup that was clouding my eyes “like leaves in a pool”. He said I have to stop wearing makeup daily- only wear it 20% of the time for special occasions. I was shocked and tried to make light of it by saying “Is going to work a special occasion?” and “You’re killing me Larry!” That seemed to irritate him so I IMMEDIATELY apologized saying I use humor to deal with things. He was unmoved and scolded me: “Look…we’re all members of the no makeup club here. I need you to do me a favor: let’s use the ‘80/20’ rule: you can wear makeup 8 out of 10 days”.

Dr. Schwartz then started talking about when I would return to the clinic. He recommended I return at Thanksgiving so we could repeat the tests I did last Thanksgiving and that would give him a better idea of the rate of the progression.

Dr. Schwartz explained how RP starts slow, and then speeds up then plateaus: “You are probably at the end of a phase of fast progression and will enter the last phase and your vision will stay the same.”

“In my professional opinion, you will probably never be totally blind”.

Steven Daniel Schwartz, MD

This is when he started to move back towards the door he came in but I still had questions about the genetic testing and wanted to show him the family chart that I had completed at his instruction after the last visit. I felt like I needed to talk faster to make sure I asked the right questions before he left. I gave him my family chart and he said that since my pedigree did not list a history of eye problems, he didn’t think genetic testing would be helpful unless their father also had the same genes. Knowing that would help our children know if they had the genes or not. I said my husband had macular degeneration and he said it’s totally unrelated. I told him I had already discussed it with my girls and they said they didn’t want to know. “Then that answers it – it would not be helpful. I reminded him that he had also tested my mom and they had told us they had seen something in her eyes and he clarified that meant that she was a carrier. He said that I had a ‘recessive XXX’ type, which was the most common type of RP and I could expect to lead a relatively normal life; I just couldn’t drive.

My mom wanted to make sure she understood what he was saying so she repeated her understanding of the anti-retinal antibody versus genetic testing and asked “then why did we run the tests for the anti-retinal antibody?” Dr. Schwartz started to answer her and all of a sudden, he flew into a rage right in the middle of his sentance! He screamed at my mom: “Ma’am, when you ask me a question and I expect you to pay attention to me while I answer it. You come here, you berate my staff and now you’re ignoring me when I talk!” My mom said she wasn’t ignoring him; she just glanced down for a second at the list of questions he told us to write down and ask at this visit. He said he was trying to answer her questions, but he can’t if she isn’t going to listen to the answers.

Mom left the room and when she was gone, he FLIPPED back to “good doctor mode” and continued to talk like he had not just yelled at my mother! I was so startled and petrified, I started crying and told him that my mom was just looking at her list and he didn’t need to yell at her.

My dad stood up and said that they were both listening but trying to understand everything. He said “well then my apologies, but I reserve the right to tell someone when they are being rude. I interpreted that she wasn’t listening to me!”

I reassured him that she was looking down at our list to make sure we got all our questions answered as it seemed like he was leaving the room. About then, Mom came back in the room and she was calm but firm when she reassured him that she was listening; she was just referring to her list. He said:

“Well, I’m trying to explain it as delicately as I can that in my professional opinion, you will lead a NORMAL life; you are NOT legally blind; you do NOT need vision rehab or everything you are wanting me to discuss. He turned to me and stated: All you need to do is move your head. We talked about this last time; I told you that all you needed to do was get your shoulder fixed so you could see better. You don’t need glasses; you need to stop putting on makeup and get some artificial tears. You don’t even need a prescription for that! Let’s do this. I will see you again but I will need you to excuse your mother from your care.” I was horrified and was trying to calm him saying that wasn’t necessary. He went on to say “You know; this is just not working for me. I can refer you to someone else”. I started crying again and he said “You know it would probably be good if you talked to someone”. I wasn’t sure what he was referring to so I said “What do you mean?” He said “DOCTOR TO NURSE!!! You know when your patient’s aren’t dealing well with things and you are not dealing with this well at all. This is the third time I’m seeing you and every visit you are in tears.“ I corrected him that I did not cry on the first visit and I was not crying because of my condition; I was crying today because he was yelling. I told him that I cried last time after he yelled at my husband for opening the door. I also reminded him that last time I saw him, I was in extreme pain, it was two days before my shoulder replacement and he had told me I had RP. I also reminded him that the shoulder was my third major surgery within three months. He said “Your crying is DISPROPORTIONATE to your condition. I don’t know how I can help you if you cry every time I see you. Maybe I’m just not helping you. Maybe this is not a good fit and I should excuse you from my practice completely. I can refer you out to a physician that can spend more time explaining things to all of you. I’ve told you; you are NOT going blind this year,  not in decades, if ever but I can’t have your mother coming here berating my staff. I moved you ahead of three people who are actually going blind so you can bring me in here to discuss makeup and artificial tears when these are things my staff has already told you!” I gestured towards Dr. Cupp for reassurance: “we discussed the dry eyes and the artificial tears…” I had to look backwards over my right shoulder to find Dr. Schwartz so I could explain to him that he (Schwartz) this was the first time I was hearing about the makeup.

I felt like I was being dumped and my first reaction was to say anything I needed to in order to keep Dr. Schwartz. At my evaluation, I had put my total faith in him when he told me he would get to the bottom of it and was committed to figuring out if there was a link between the degeneration of my joints and the degeneration of my retinas. At our second visit, he said my ERG results were a little atypical but for me not to worry; he would present my case to the obscure case panel so he could collaborate with other physicians and researchers. I did not feel that any other provider or medical center within a reasonable distance from my home would be able to offer me this same level of clinical expertise.

The day was a series of contradictions…one provider telling me I was handling it well and the other one saying my tears were disproportionate.

Schwartz demands constant eye contact but never engages in the visit or establishes eye contact with me, the patient. He stands in my blind spot knowing I also have challenges turning around with my shoulders.

Providers can tell patient they need to talk to someone but saying their grieving is disproportionate is judging.

I regret not listening to my gut after the first outburst. I dragged my parents up there, put them through that day of hell just because I was wanting answers and believed Schwartz was the one who was going to give them to me.

Author: Tenayshus