u/amj5617

Who's going to the Atlas homecoming this year? Anyone choose to not renew since it's in LI instead of Albany?

Hi Everyone,

I had a presurgical consultation, and it was a wild experience with, let's call them Dr."Chart Not Reviewed." I'm changing some information for obvious reasons.

It started out great. I brought a friend with me to take notes and be my emotional support person.

I was greeted promptly by a patient care tech who respected my request for a manual BP reading and hilarious and greeted both me and my companion. He established baseline vitals and clearly communicated the next steps. When he noticed that my companion and I were using ASL, he signed “nice to meet you," which was appreciated.

It is important to note that my companion is Hard of Hearing, and we both communicate using both spoken English and ASL. We were using sign language at the beginning of the appointment as part of our normal communication style. I also hope this is not relevant, but I am Black and my companion is white.

We were then joined by a medical student and a PA for the surgeon. The medical student began collecting my history. I have a complex medical history, which made it difficult for him to summarize, as standard template questions do not account for rare disease conditions. He was only able to establish a basic history, including pain scale, location, duration, and triggers. When he asked about my pain level, I joked that for someone with a chronic illness, I would consider myself at a 3, but currently I was at about a 6 or 7. (Yes, we joked about 6/7. He was nervous and I was putting him at ease). I want to note that these two were also in the room for this entire exchange, so there are witnesses.

Dr. “Chart Not Reviewed” then entered and introduced herself. She proceeded to ask basic questions about my pain, but it quickly became clear that she had not reviewed my chart. She stated that my history of Hirschsprung’s disease was not in my chart, despite the fact that it is documented under “health issues.”

When I explained my surgical history, I described it as both laparoscopic and laparoscopic/open surgery, explaining that it started laparoscopically but, two days later, I required conversion to an open surgery due to an infection. When she did not seem to understand or acknowledge this, I repeatedly used the term “open surgery” to clarify. Despite this, Dr. “Chart Not Reviewed” continued to insist that I had only had a laparoscopic surgery.

This back-and-forth occurred approximately six times. Each time, I clarified that I had both a laparoscopic and an open surgery. Despite my repeated attempts to clarify using different terminology, she continued to interrupt and correct me. She then stated, “well then you don’t have large scars,” which I again corrected by confirming that I do. She was more focused on correcting my wording than listening to my accurate description of my own surgical history.

It was evident throughout the visit that Dr. “Chart Not Reviewed” was not familiar with my medical background. She had not reviewed my prior GI testing and appeared only aware of recent ejection testing, without understanding the documented decline over time.

At one point, she incorrectly insisted I had been seen in the local pediatric GI department, even after I clarified that this was not the case, explaining that I had moved to the area for college and had not received pediatric care there.

After the abdominal exam, Dr. “Chart Not Reviewed” began drawing a diagram of the organs involved. I repeatedly expressed concern that objective testing over six years showed a declining ejection rate. She spoke over me, continuing her explanation rather than acknowledging or addressing my concerns.

Despite this history, she insisted I undergo both upper and lower GI evaluation via endoscopy and colonoscopy. Her reasoning was that other GI disorders could mimic gallbladder pain.

Pushing back, I reiterated the location and frequency of my pain, along with my gynecological history and a clear colonoscopy in 2019. I explained that my pain pattern has remained consistent, and that I had specifically undergone the colonoscopy to address these concerns. She dismissed this, asking, “that was in your left quadrant, right?” I did not recall the exact detail at that moment and responded that I believed it may have been in the  more general upper quadrant. That night, I reviewed my medical records in MyChart and confirmed that I had ultrasounds on 4/12/2019, 9/28/2017, and 5/25/2014, all documenting complaints of pain located in the upper right quadrant.

I also expressed concern about the change in my ejection fraction over time, specifically that it had declined from 79% (borderline hyperactive in 2019) to 23% this year. She dismissed this, stating that she typically sees patients in the single digits. This response made me feel as though the number itself was being prioritized over the documented decline and my ongoing symptoms, including pain. It left me with the impression that 23%, which is considered abnormal, was being treated as though it were acceptable or “normal” in comparison.

She said that for biliary dyskinesia, surgical relief would be “50/50 at best.” She said multiple times that she was not an expert in Hirschsprung’s disease and, as a general surgeon, would not recommend surgery. (Mind you, being that most doctors trained on studies that I was a patient in, you'd think she would listen to me, since I know my own body)

Dr. “Chart Not Reviewed” also did not explain the potential risks of continuing to delay surgical intervention. In particular, she did not address the risk of worsening gastrointestinal complications, including constipation, which is a serious and potentially life-threatening concern for individuals with Hirschsprung’s disease.

Additionally, she did not ask about my quality of life in relation to the level and persistence of my pain, did not assess whether I was able to financially support additional testing, and did not ask whether I was comfortable with or consented to the proposed plan for further procedures.

When I explained that, due to family planning considerations and work constraints, I needed to pursue surgery sooner rather than later, these concerns were dismissed because the condition was not considered acute. She repeatedly referred to the surgery as “elective.”

Throughout the appointment, Dr. “Chart Not Reviewed” frequently spoke over me. When my companion and I began using ASL as a shared method of communication, Dr. “Chart Not Reviewed” appeared visibly uncomfortable and did not demonstrate cultural sensitivity or attempt to accommodate communication needs. (This is a area with many Deaf people and not uncommon to have multiple Deaf patients a year).

When my companion asked a question in spoken English regarding surgical outcomes, her tone shifted. She directed her response to my companion rather than to me, listing worst-case outcomes before quickly dismissing them by stating that I am “young and healthy.” She did not fully explain potential complications such as bile duct injury, dumping syndrome, chronic pain, Pancreatitis, or bile leakage, although she did acknowledge that further surgical correction could be difficult.

By the end of the appointment, it was a standoff and I just became quiet. She was not receptive to my input and moved to refer me to GI, with the only follow-up plan being reassessment after I establish care there.

So this is my request moving forward:
I do not want to be seen by this Doctor again, and I do not consent to her providing further care or performing any future examinations on me. I am requesting transfer of my care to a different provider within the same hospital system who is not influenced by her assessment or bias and who can provide an independent evaluation of my condition.

I am specifically requesting a referral to another physician who can appropriately evaluate me for surgical management and who can work within a timeline that reflects the progression of my symptoms. At this point, I have been in pain for 12 years and the delay of medical care is unacceptable. 

I have children and significant childcare responsibilities, as the head of household and primary caregiver and these logistical constraints are central to my medical decision-making. In addition, the recommended requirement for both colonoscopy and endoscopy involves significant scheduling delays, which are often extended. It is unlikely that this pathway would be completed within a reasonable timeframe. This directly impacts my ability to plan for future pregnancy. If I were to become pregnant during this extended evaluation period, I would likely remain symptomatic and in pain without the option of timely gallbladder removal, meaning potentially worsening discomfort and functional limitations throughout pregnancy.

I'm already missing work because of these attacks. I postposed a MONTH of meetings in anticipation of scheduling a surgery and recovery. I don't take the idea of surgery lightly, because of my past history with stomach surgeries and infection. So I came to the conclusion of surgery after a lot of thought.

Anyways, if you've gotten this far, please give me your honest insight. This whole appointment was wild to me. I've never been talked over or dismissed that much in a very long time.