Second Opinion-part two

Oh, say can you see?

picking up after the commercial break…

I share these actual experiences to bring out into the open what people are going through…most suffering in silence…not knowing how to confront…or if it would make any difference if they did.

Almost everyone experiences some degree of isolation…and though they may have people they can complain to, no one quite knows how to actually move the needle to get what they need and to address the underlying problems.

Like the child who declares ‘The emperor has no clothes,’ let’s just break the ice, crack some eggs, and stir up the memories that were laid aside in frustration and resignation. Not to make you mad as hell, although that will likely be part of it, but to make you more cognizant of what you have witnessed and experienced.

That awareness holds power.

Adventures at the eye doctors…

Note to the new eye specialist…

“I am giving you this brief history to let you know that you're walking into some bad history and to help you understand why I want to participate in care and treatment decisions rather than being a passive, uninformed patient. I have great respect for doctors, but a bit of caution, as you will understand. Thank you...”

Initial episode CRVO 2012. Left eye sudden discomfort, vision loss occurred on a weekend. A Walmart optician was the only available open office. He sent me immediately to the ER w/ instructions to request an ophthalmologist on call. (Community Hospital, Anderson, In.)

They did not call a specialist but sent a young Md. who noted elevated BP but did not treat or prescribe. He referred me to a local opthamologist’s office for the following week, even though it was a clear emergency in the words of the Walmart optician. The local referral never returned a call or scheduled me (in 3 yrs).

Then I received a hospital bill of nearly $6000….which was reversed after 3 appeals (one of which involved a panel of doctors who upheld the bill!) I was incensed at the outright lies and their decision. I fought it further and was offered a 50% discount. I refused on the basis that there had been no treatment and on their failure to call an OPH. They finally relented and cancelled the entire bill.

I fought the bill on principal, but I also needed to learn the system on behalf of my own patients, most of whom were elderly, timid, and/or used to being abused by the system. They could not advocate effectively for themselves.

This was also inspired by 3 of my own patient/friends who are MDs. They, like myself, rarely ‘doctored’, but when they did and experienced the system as patients themselves, they were horrified at what they found!!

One doctor who was diagnosed with Non Hodgkin’s Lymphoma as a young man, gave me an incredible education and a Parting Gift to pass on to others…

Parting Gift...

He felt the treatments being urged on him were not appropriate for his age and diagnosis. He went through a great deal of difficulty trying to reason with multiple experts. ‘Parting Gift’ gives you an honest look behind the scenes. It shows you what you are dealing with and how to hold the reins over your body and the choices that are made.

Another doctor spent many months in my practice as he went through prostate cancer treatment. He was quite healthy as a rule, but when he turned 65, he thought he should get a check-up…his 1st checkup in 40 years.

His PSA numbers were slightly elevated…not too out of the ordinary for a man his age. He got the aggressive ‘care’ described in “Parting Gift”. He was caught off-guard, blindsided and rushed into invasive testing, followed by aggressive treatment. Important side effects of the treatments were not discussed, minimized and/or lied about.

He was about to get remarried. He tragically entered the marriage impotent and incontinent as a result. It was heartbreaking to see him through all of this.

The 3rd doctor was my own doctor. A genuinely caring and very fit doctor. He was America’s top wrestler in his age (55) and weight class and was about to compete internationally when he tore his hamstring muscle at the upper insertion. The muscle just sprang and ‘puddled’ near his knee. It required surgery…the sooner, the better. But because of standard of care protocols, he had to jump through all the hoops before that could be arranged. Rounds of x-rays, nearly pointless and inappropriate physical therapy, followed by more testing, more specialist visits, MRIs, etc. He suffered for over a year before finally putting his foot down and demanding the surgery he should have had at the outset. By that time, the muscles had atrophied beyond repair, scar tissue surrounded the ‘puddled’ muscle and the sciatic nerve lay exposed, leaving him in constant severe pain. He worked from a ‘kneeler’ that year.

As he broke it down for me, he said a 2 inch incision could have been made near the upper insertion of the hamstring, a hook could have brought the muscle back up and it could have been re-attached, followed by a short recovery period. Instead, because of the lengthy interval, a long vertical incision was made from the buttocks to the knee, the muscle had to be freed from the scar tissue, the sciatic nerve was nicked and there was a 4 inch wide horizontal scar at the top. A common sense decision by a doctor could have been made, avoiding this whole nightmare. But the standard of care prevailed and he had to jump through all the hoops just like everyone else!

His wrestling career, the sport that he loved and excelled at, and the coaching that he was devoted to, were cut short…over! He will always have some degree of pain along with a limp. He also was shocked at what the system had become. Even as a doctor, there was no circumventing it. It was nonsensical…and harmful to the patients.

*******

Back to the eye doctors…

Two years later, as I recounted the hospital story to a new OPH, he listened carefully, took some notes and left the room briefly. He came back with his calendar. He was, in fact, the excellent OPH who was on call that very weekend, but he was not called due to 'internal politics'. He was incensed at their failure to call him. He lived within 3 blocks of the hospital. “I could have walked there!” he told me. This resulted in the needless loss of most of the vision in that eye.

12 years later I again had a weekend emergency. This time I was in a new state where I didn’t have an OPH. I had a strikingly similar experience at Martin North ER. I went to the ER in obvious distress and asked if they had an OPH on call. They never answered my question, but proceeded to try to admit me. I kept asking them before accepting admission or further measures. They continued to evade the question and tried to admit me and have a regular Md. look at me. I knew there was no time to waste. While I was waiting, I put in an after-hours call to Dr. F OPH and Dr. S. Dr. F called back while I was there. He clearly understood what was going on. He advised me to “Leave immediately, refuse service and meet him at his office”, where I received excellent care and follow-up. Oddly, however, he only treated the right eye and failed to look at the left eye (the one I struggled with) When I asked him about it, he sent me to a different doctor in his office, though he was qualified to treat both. So Dr. B entered the picture…see below.

Meanwhile, the hospital ER then billed my insurer. I told the insurer what had happened….there was no admission or treatment, hence there should be no bill. At first, my insurer was inclined to pay the charges anyway. I objected and called for an investigation.

The investigation showed that everything was in order. I said “That’s impossible.” There was no treatment, I would not take a seat or a bed and my request was clear and consistent. “Do you have an OPH on call?”

In pursuing the incident myself, a staff nurse read from my file. What she read was pure fiction! The hospital had invented an entirely false narrative. With that, the game was up. We had them reported and the bill reversed.

Back to the initial experience...I was then seen by Dr. Perez/Dr. Li. Their office was very rushed. A real cattle call atmosphere. I was accidentally dilated with a strong dose of Atropine, leaving me unable to see for 13 days. I was leaving for Thailand the following day and their office did not return my emergency calls. It was very frightening as I had no explanation. I thought I had gone blind. (Luckily I was travelling with a close friend who helped me navigate.)

On returning to their office, the doctors tried to cover their mistake and deny any mistake or take responsibility…but their head tech was one of my massage patients and she shared with me what had actually happened. Those drops should have been segregated and not placed near the typically used dilation drops. They quietly rectified their procedures and locked it away, accepting no responsibility.

Then I received initial Avastin injections...several poorly administered as "Dr Li doesn't know how to inject”. I discovered via concerned staff privately that she poised an assistant to actually inject (as if the assistant was the doctor). I saw further proof as I found that she was unable to draw blood or inject dye for a test.

I was not advised of future complications from the injections, such as permanent changes in the pupil, cataracts, etc. Both doctors were rushing from patient to patient and made it clear they had no time for questions and/or explanations. By this time, I was increasing leery of Dr. Li, in particular, who was very heavy-handed. At one point, she wanted me to see an MD prior to further treatment.

While still not able to see well enough to drive, she insisted that I see a certain MD whose office was 20 miles away. I reminded her I live alone and could not see. She held firm! I perservered on my own and I found an MD across the hall from her office. She was well aware that she could have sent me across the hall the entire time!

I then decided to contact Bumrungrad International Hospital and Rutnin Eye Hospital in Bangkok, Thailand for 2nd opinions.

At this, Dr. Li lost her temper. She screamed and ‘forbade me to travel abroad under any conditions!’ She then insultingly described Thailand as a 'third-world country'. She would not permit it! All under the guise of ‘caring’.

I looked at her, thinking, ‘You also come from a third-world country.’

To retain the upper hand, she then scheduled me for surgery 'to remove those nasty cataracts’ on the day of my return!!!' This was the first I’d heard of cataracts…

Both Bumrungrad and Rutin were excellent experiences! At Rutnin, a specialist eye hospital, they told me that cataract removal was not necessary at all.

Their opinion was so different! I was a bit confused. “But Dr. Li said it was urgent that I have them removed.” I told them “I have the time and the money. Could we do it anyway?” They replied, saying “It would be completely unethical” on their part to perform those surgeries, again reassuring me they were not an issue at all. They then took time and gave me my first real education after 2 years of fruitless inquiries.

READ ALL ABOUT IT…THE HEADLINES SCREAMED!!

On my return to the US, I cancelled the cataract surgery only to find the Drs. Li and Perez on the front page of the local newspaper proudly announcing their new machine for cataract surgery.

So THAT’S what was really going on! They was pushing an unnecessary and inappropriate surgery. Fabricating non-existent cataracts…just as they had with me!!!

They needed to pay for that expensive equipment!

From that time, I witnessed hundreds of people receiving unnecessary surgeries. Many of them were my patients. Many had poor outcomes.

I switched doctors, had better care (any place was better then where I’d been) and then was referred to Midwest Eye Institute in Indianapolis. Dr Li referred me to Dr M with the following remark “Please tell him I look forward to our next Greek cruise!” She was obviously smitten.

There was another unexpected wrinkle.. I was uninsured (by choice) and I was a self-paying patient. I just grew up that way. We doctored only as needed and paid as we went. I had no idea what upset that would cause almost everywhere I went! I had budgeted for such possibilities…What could be the problem?

On arrival at his office, 90 minutes away, I filled out paperwork and explained with a smile that I was ‘self-pay’. Eyebrows were raised, back office discussions took place and I was set to the end of the line. I watched all the other patients being seen. Finally, after 4 hours of waiting, I was told that there had been a scheduling error and that I could not be seen. I could also not be rescheduled. I read the staff’s discomfort as excuses were made. Why were they lying?

I left their office and made an appointment with another specialist. As luck would have it, one week later, I happened to see a letter to the editor of the Wall Street Journal written by this same doctor! It was a highly self-congratulatory letter where he prided himself on NEVER turning an indigent or Medicaid patient away. Had I fallen to some unknown level of ill-repute for being a self-paying patient?

A much better experience took place across the hall with the new group, thankfully. That is, until a shunt surgery was performed by ‘renowned’ Dr. C. I was semi-awake throughout. Shocking callous and distracted conversation along with rough handling characterized this experience… I felt like my head was being handled like a football. There were no pain meds given at the end. I was in extreme pain and my regular MD had to step in. I found myself quite traumatized afterward…

Then I had cataract surgery in my left eye (different surgeon) which went well. The cataract was caused by repeated injections…which no one informed or warned me about. These injections are SO common now. I have never met a patient who was told about the eventual development of cataracts as a result of these injections.

I am also dismayed that there seems to be no apparent improvement in treatment options in the 12 yrs. I’ve been on the scene. I have done a fair bit of research, travelled out of state to work with anyone offering better alternatives…everything short of stem cells, which I think are ill-advised for eye ailments at this stage.

How is it that we send people to the moon and yet, we make no progress in these disciplines?

Some laser procedures followed, fewer injections and then I had a period of relative calm for several years. I monitored IOP regularly and continued Timolol twice daily in both eyes..

Back to Florida with Dr. B… We resumed injections and more eye drops were added. She then sent me to Dr K. Surgery of some sort was suggested (no explanations given) and she prescribed several additional eye drops. I felt I was being rushed into surgery again with no explanations. Something felt off.

I became increasingly concerned with the harsh side effects of the meds, informed both doctors and was told simply to drink more water (which I was already doing).

I felt over-medicated and under-informed regarding surgery and the additional meds. I started to experience other strange side effects (eye changing color, worsening side effects.) Each time, I questioned the wisdom of their treatment, there was no further comment but to comply. My eyes itched horribly, nothing tasted right, things felt toxic, my vision was poorer… and then I developed disturbing neurological symptoms.

At that point, I contacted a friend who teaches coding to 40 OPHs at the University of Kentucky (a teaching hospital). She took my info, meds, problems to them. They were surprised at the seeming overuse/combination of meds and, without overstepping their boundaries, advised me to get a 2nd opinion immediately. Meanwhile, my research showed that some of the meds were contra-indicated for use together. No comment from my doctors when I brought this to their attention.

My last injection w/ Dr. B did not go well. I decided to take a break and consider my options. I relayed all the information to her and did not hear back. Meanwhile, the neurological symptoms were becoming alarming…

No one was listening and so I decided to wean myself off of most of the additional meds, continuing with the basic drops I’d used for years. I felt better and my eyes stabilized. Within 30 hrs, the neurological symptoms left completely…and have never returned. Meanwhile I searched for that 2nd opinion… Dr. F scheduled me for follow-up in 3 mths…far too long. When he saw me he was understandably alarmed when he finally looked at my left eye. He insisted I go to Bascom Palmer Eye Hospital 24 hr ER in Miami without delay. This could easily have been handled from the outset at his office 2 miles from my home. His office is well-run and not overly busy. It was a lack of attention by a good doctor nearing retirement…

Off to find a better fit one more time,…

At this stage, I have 2 specialists in two different offices who are exemplary in their respective diciplines. No nonsense, smart, dedicated! There is a good collaboration between them, they have brought new and effective treatments to the table.and, if there is an emergency, I am seen same day. It is thoughtful care, not cookie cutter routine and there is time to talk, ask questions and hash things out. Almost all I could hope for…Still hoping for those innovations.

One last kicker…I was fitted for glasses and contacts by Dr G…’he is the best’. He is affiliated with one of these offices. I found him to be a little flirty and mercurial. One day he was going to yank my driver’s license and a week later completely reversed his opinion, only to threaten me with taking my license again! I had told him, I’m not an easy fit, but with a little patience, it can be done well. He was such an ‘authority’ that he didn’t need my remark. He sent me home to wait for 2 weeks for a new lens that clearly did not fit. When I questioned his results, he tossed off kind of an arrogant reply. Nonetheless, he told me to try the new lenses for a couple of days and we could go forward or fine tune the scrip. Long story short, things didn’t add up. I went next door to another optician and read 20/20 with my old lenses.

It’s kind of a never-ending active wariness and necessary participation with our health practitioners. You can’t stop along the way to indulge cynicism or too much anger. You just have to navigate the rapids…

On a more uplifting note…

The 2 most effective treatments I've had are not included in my medical records, but for what it’s worth, I share these with my American docs.

Hyperbaric oxygen has been the most notable in relation to injections, etc. Dr Oscar Ordonez in Muncie In. had given 3 treatments in recent years. Each time, my vision improved by several lines for several days (the only time I have been able to read with my left eye). The results were gratifying, but not long lasting. I like oxygen therapies for many reasons (ozone, HBOT etc.) We’ll see what time, experimentation and further studies bring…

"No worry! Lie down. Me fix!"

22 yrs ago at the age of 50, I was losing the vision in my right eye. I was on an extended overseas trip. My 1st thought was to consult a specialist as soon as I arrived back in the US.

While in Thailand for specialized training (I'm a traditional Thai therapist), I was recommended to a young man, Master Poo. I asked to work with an old master but everyone sent me to this 35 year-old with a dubious name. "He is the best."

At the time, I had no health problems with the exception of my right eye.

When I crossed the threshold into his home, he took one look at me, and said "Oh...you're losing the vision in your right eye, aren't you?" That would not be apparent to anyone. He saw my look of surprise and fear and flashed a big smile, saying "No worry! Lie down. Me fix!" I had not thought that Thai massage would have any bearing on vision.

He started by pressing heavy thumbs into my right forearm, of all places, until he found a spot that burned like fire! He started manually freeing the entrapped nerves and tissues. He followed several nerve paths up the arm, into the armpit, deep under the scapula, and through the trapezius, cervical and occipital regions. He sympathetically apologized along the way for the pain and bruising.

He then started to teach me, saying the muscles on that side had been so tight for so long, that the flow of blood, lymph and nerve transmission were very restricted and that my eye was dying ahead of the rest of my body. The simple logic of it…

I had, in fact, had a phone tucked in a restrictive position on my right side for 10 yrs. Even though, I no longer did that, that muscle memory was in place. He worked manually for about 2 hrs, sent me on my way and 3 weeks later, my vision was restored and better than before. He is the sole reason I am not blind today...

I studied with him for some time. I brought other international students to him and he allowed me to sit in on the sessions and learn. These deep therapies can avert strokes, restore mobility to the stroke victims, restore vision, etc.

Brilliant work from heart-centered practitioners…

It does us good to remember that there is more beyond our borders. We are not always ‘the best’ as we like to pride ourselves. In future posts, I’ll describe some of those experiences beyond our borders… Our medical system, for all its progress, is degraded in its culture and greed.

I have often challenged doctors to go to Bumrungrad and see how medicine is practiced there. “You will be forever ashamed at the way we practice here.”

I am happy to say that two of them have taken that challenge this past year… They were astonished at what they found. They will be returning…

For patients…please know that there is more out there than what is presented. Don’t be afraid to question and to seek out better doctors, especially when things don’t feel right. Take an active interest and role in your care. Advocate for yourself and your loved ones.

As I write this today an article came across my desk: https://www.dailymail.co.uk/health/article-14422061/Trump-launches-probe-predatory-practices-UnitedHealth-robbed-millions-taxpayers.html

As always, feel free to share and restack