I had a disturbing encounter today. My caregiver dropped me at the hospital curb for Physical therapy and as I was walking through an automatic door I’ve walked through a million times, I felt someone gently grabbing my arms from behind at the same time I heard a male voice saying “you’re okay….just go a little to the left”. It really startled me and I tried to see where the voice was coming from, but the man was totally out of my field of vision. I guess to him, it looked like I was going to walk into the wall, but I wasn’t. I was mostly just trying to get through the large automated sliding door without hitting anyone with my cane. The man continued to hold onto my arms and “helped” me until I got to the elevator. It was very odd as I know he meant well, but grabbing me from slightly behind me scared the beggeezes out of me as it made me realize how vulnerable I am. It also strikes me how little people understand about the degrees of visual impairment and how much work we must do in order to educate the general public on how to interact with people with visual impairments. But how do we communicate this?
I’m probably over analyzing the incident, but it got me thinking about what I would do if his intentions were not good. I’m pretty small and although I’ve gotten much stronger through PT, the fact is that I have had 4 spinal fusions and 3 shoulder replacements leaving me pretty weak compared to most people. Add that to the diminished eyesight and I’m trying not to be scared to walk in public places by myself. I am left now with trying to figure out what I will say to the next well-meaning stranger to let them know I am okay without being rude. I posed this question in a RP group I participate in and I am anxious to see what advice others in my position have.
The Retina Division Chief at UCLA’s Jules Stein Eye Institute is a DANGEROUS physician.
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!
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 my 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. I am probably at the end of a phase of fast progression and will enter the last phase and my 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, you are RUDE! 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 “well, all this crying is just 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.
Today is the day to get the “official” prognosis. Hope I am able to absorb everything. My hubby took me. Before my appointment, Hubby and I had a divine lunch at Skylight Gardens right around the corner
1:00 pm- We arrived on time for the appointment. My left shoulder is killing me and I do not know how long I can sit on uncomfortable chairs and wait. I honestly cannot wait to have the shoulder replacement in two days.
1:45pm-tech did basic exam and dilated my eyes and sent us back out to the waiting room.
2:20 pm-Moved into an exam room so a resident came in to look in my eyes, tell me the team still had to review my results-it will take a bit. Back out to lobby to wait.
2:30 pm-Moved back into the SAME exam room.
“I am discussing confidential patient files in there and it is NOT okay for you to barge in. You don’t come through a door you didn’t come through!”
I was VERY upset and in so much pain, when my “doctor” bullied my husband, I lost it. I’m still not sure if the tears were from pain, fatigue or fear of this “doctor” whose physical appearance alone is intimidating to my 5’2″ 135 lb body.
I was in so much pain, so tired from the wait and felt physically threatened by his shear size and rage. He is a tall man-probably over 6 feet and at 5’2′, in pain, tired and nervous, it did not take much to upset me.
But just as quickly as he bullied my husband, he switched back to “caring doctor” mode, very gently touched my shoulder and said they were just trying to find the labs I had done. He asked if I had them done and I told him yes, I had them drawn 2 weeks ago. Then he switched back to caring doctor mode and very gently reassured me he’d be back in shortly. But it really upset me that he yelled at MY HUSBAND like that and I could not stop shaking and crying. I figured I would cry that day, but not because my doctor bullied my husband! Jim told me to calm down and tried to downplay it so I would calm down. I did my best to calm down.
Jules Stein’s Retina Division Chief is Dr. Jekyll: a psychopath who should be banned from patients.
5:10-Dr. Schwartz and his Fellow, Dr. C. finally came in the room.
“You have retinitis pigmentosa plus ‘something else’ but we don’t know what it is. Your ERG wasn’t totally flat as we expect with RP so that makes me think there is also something else going on. But I will to figure it out. I’ll be taking your case to the “obscure cases” board to discuss with other colleagues.”
I asked why my retina was degenerating along with my joints. He said he can’t prove it but knows in his gut there is a link. He vowed to figure it out.
My vitamin A is a little low but he doesn’t want me to supplement yet. He wants me to take Diamox after my shoulder surgery and pending my orthopedic surgeon’s approval after my shoulder replacement. Diamox is thought to halt the progression of the disease but they don’t know how much. He said it might have some “AWFUL” side effects and that is why he wanted me to wait until I was stable after surgery.
“You can’t drive ever again. It’s just not safe”. “You only have 10% of your visual field and you have had an angel sitting on your shoulder. It’s a miracle you didn’t injure or kill someone or yourself”.
(To his Fellow) “Make sure you note in her chart that I told her to stop driving”.
I am to return in a month and we will discuss visual rehab programs. Jules Stein has one as well as other resources. The goal right now is to get through my shoulder surgery then return in a month to begin planning visual rehab and figure out how to live with my limitations so that I’m safe. He said there is a “boutique” at Jules Stein with visual aids and it’s only for health care professionals.
I asked him how long I will keep my vision and he said he fully expects I will always remain “sighted” on some level. What he can’t tell me is how much vision I will lose and how fast I will lose it. He will monitor me over the next 9 months after I start the Diamox and that will give him a trend line so he can plot the rate of progression that I can expect over my lifetime.
I can use my eyes; he doesn’t want me to think I need to rest my eyes. He urged me to continue living normally; working on the iPad (it was in my lap where I was writing notes), and my phone, computer, reading, TV, whatever. He said it will be critical to my emotional state to keep these as normal as possible.
“There are several gene therapies on the horizon and I’m hopeful that you’ll be able to benefit from them. When you return, I want you to meet with a genetics counselor. I also need you to bring me your family tree and have your daughters come too. “
He ordered labs- anti-retina antibodies. His Fellow saw us out and I got him to let me get the labs drawn at home with the promise that I would bring him the results to the next visit.
Dr. Schwartz asked me if my vision problems started before my gastric bypass and I said they had. He said that gave him hope and indicated that it might mean my RP would be a slow progression.
At one point, he mentioned other eye diseases and brought up Macular Degeneration. That reminded me and I told him that Jim has been told he has MD. He scolded me were not here for him. He said that today was all about me. He wants me focusing on ME right now and ONLY me. He said we will delve into that later.
I was crying throughout my whole discussion with him after his blowup. Frankly, he scares me. This is a physician who should hang up his license. He is a rage-aholic and his patients his punching bag. He is the poster child for the “Physician God Complex”. He only talks to the patient, abusive of their supporting family/friends. NOT a good approach for a doc who delivers devastating news on a daily basis. I don’t care how phenomenal a physician he is; if he can’t reighn in the Dr. Jekyl act, I will NOT see him again. AND I won’t go quietly.
I apologized for crying and that seemed to flip him back into the “empathetic physician” mode:
“RP is a very difficult diagnosis to get and it’s okay that you’re crying. You need to cry – you have allot of your plate right now. You are about to go through your 2nd shoulder replacement in 6 months, which isn’t an insignificant surgery. I want you to take one situation at a time. The next 9 months you have allot of new things to learn and right now, I only want you to get through your shoulder surgery. Come back in a month and then we’ll start tackling the other stuff.”
We left the room, checked out and I pretty much sobbed through the whole way home. We were on the road for well over three hours so I called my parents, my best friend and my daughters on the way home. When I got home, the girls were waiting with a bottle of wine. We drank, cried, and tried to absorb it all. Jim was so blown out and exhausted, he skipped the wine and went straight to bed.
At the end of the day, I could not decide what was more frightening; my diagnosis or my doctor.
On our way to UCLA again. Jim is
taking me and Shawn. I’m doing another visual field and finishing the
ERG today and Shawn’s surgeon wants to do a post-op check.
I don’t know how I’m going to hold it together for any of this. I feel nearly catatonic at this point.
I woke from my catatonic state a little
so I wouldn’t be such a downer for Jim and McGee. They are both trying so hard to stay positive. McGee,
on top of her own surgery recovery and Jim trying to balance the increased demands
of his promotion with taking care of me and keeping this house running.
I had my umpteenth visual field test and as usual, feel like I didn’t do so hot but at least it
is not as grueling as the ERG. McGee’s doctor scheduled her to return 12/20 and
once again, I won’t be there for my daughter as I will be in the hospital after
my left shoulder replacement.
Day 2 of the ERG was not as grueling;
there was no light adaptation
required so that helped. Sara, the tech, is awesome
and makes it much less scary. I was able to listen to my audiobook so that helped tremendously to make the time go by faster. We drove home in the LA traffic and I dosed the whole way. We picked up an order from Islands but I was too tired to care about eating and went straight to bed.
have a follow up on 12/17 to find out if I have RP. Two days after that, I will
have my left shoulder replacement.
Appt at 930 – saw an ophthalmology technician. She did the basic tests – cover the right eye then the left, read the chart, etc. Then she numbed my eyes, did the thing where they touch your eye with the pen. Then she dilated me and sent us back out to the waiting room. Mom and Dad enjoyed talking to the other patients about politics and how the world was ending, the Indians losing their land, the usual topics. I put my iPod in and listened to audiobooks and then lay down on the couch.
It was nearing lunch time at this point and I was starving. Seemed like they were taking forever. We were discussing where to get food and this nice British couple told mom and dad how to get to Ralph’s across the street. Mom and dad ran off to get food.
Mom and Dad were still gone when I got called into the room. I first saw a Fellow then Dr. Schwartz came in. He calls me Nurse Redding – it’s very sweet. He said that it wasn’t Plaquenil as he didn’t see the deposits caused by Plaquenil I took for years for Lupus.
He said he didn’t know what was going on but was going to run a bunch of tests. He’d start with the easy ones and then if they don’t tell us what is going on, would progress to the more “unpleasant” ones. He let me know I may have a lot of testing ahead but he would figure it out. I asked if it was my retinas and he said yes it definitely was but didn’t know what. He said it may be as simple as a vitamin A or D deficiency since I had a gastric bypass and ordered a full vitamin panel. He wanted a brain CT to rule out neurological issues. He added a spine CT that the neurologist at Stanford ordered.
The team of three came into the room: Dr. Schwartz and his two fellows. They asked me if I had trouble seeing at night and I said yes. “You definitely have some atrophy of the retina but we don’t know what it is yet. It is some type of inherited disease and your mom probably has it too. We will do some genetic testing to see what markers it is related to”. I asked if it was retinitis pigmentosa and he said “Yes-it’s in that family but we don’t have a diagnosis yet. Give me two weeks to figure this out. I promise you I will.” He wasn’t talking restoring my lost vision anymore; now the goal was just to figure out what the cause is and I fear that restoring the lost vision isn’t going to happen.
They asked mom if she had trouble seeing at night and she said yes so, they said “let’s look at mom right now”. They put mom into the exam chair, dilated her and said they saw “some” atrophy but not nearly as much as I had. Then they dilated her and sent her upstairs for the same photos I had done.
While mom was getting those done, Dad and I drove to the lab for my blood tests. By the time we got done, it was nearing 5 pm – we had been there since 9am! I was starting to fade fast and desperately needed ice for my shoulder. The phlebotomist had given me a bag of ice (very sweet) but it wasn’t enough and we still had to pick up mom anyway so she walked to Ralphs and we met her there. Mom and Dad got us chicken and other treats from the deli to eat on the road. We drove home and Dad actually got us home pretty quickly considering it was rush hour. Got home around 6:30 and I was wiped out.
I awoke today with Lupus. By the time I went to bed, I had been diagnosed with a very rare form of Sever Eroding Osteoarthritis (incorrectly diagnosed as Lupus in 1989). Oh, and for extra fun, I am also going blind, but the docs don’t know the cause yet. (Yey me!?/*&$%@^)
Follow My Finger
Our next appointment was with the neurologist that I was referred to by the orthopedic surgeon, Dr. H. The neurologist Dr. M. said it would only be a half hour appointment since he squeezed me in. He is testing me for Myasthenia Gravis but is 95% sure I don’t have it. He also ordered a cervical spine CT to see if my issues are caused by compressed spine. The really scary part is that I failed the part of the neuro exam that looks at visual field. He had me cover my left eye and my right side was unable to see anything beyond a tunnel. It’s like looking at the world through a tunnel (hence why they call it tunnel vision).It explains the car accidents, the falling and bumping into people and things.
I was sent immediately for an ophthalmology exam. Ophthalmology is at another campus so we had to get a cab to get there. I saw a Fellow; Dr. A. and she said my intraocular pressure was good; indicating I don’t have glaucoma. That’s the good news; the bad news is, she has no idea what it is. She scheduled me for a visual field test tomorrow and to consult with her attending, Dr. S.
Today was emotional to say the least; my epiphany in the neuro exam was more like an emotional breakdown. All I keep thinking is “I’m screwed”. My mom keeps telling me not to worry until I have to but I can’t help how I feel. I’m petrified.
I’m in isolation because my pre-op testing nasal swab came back positive for MRSA Methicillin-resistant Staphylococcus aureus (MRSA). So, all my visitors have to wear gowns and gloves to see me-what a pain! BUT the silver lining is it guaranteed me a room by myself!