Hi vlk420

how are you?

I feel so frustrated since 2 weeks ago due the sudden peaking of pain, burning, numbness, struggling to walk, feeling something poking deep inside, pain through my legs, arms, shoulders, hands, fingers, not to mention the headaches.

I have contacted the pain management doctor's reception several times but he is too busy doing other things.
I can understand that doctors have appointments during the day but currently I am very critical, unable to sit properly and unable to sleep at all despite taking 5 medications for the pain. I don't know how I am going to cope.

I would like that the doctors to listen to what is happening to me and have a review, an investigation into why I am so extreme now.

My appointment with another neurosurgeon another 22 days away, an eternity to wait while in unbearable pain.

Best regards

Alfred

@vlk420 It sounds like you are a pretty good advocate for yourself. I don't think doctors ignore patients intentionally, but when they don't know the answer, they don't know and probably don't want to admit that. No surgeon wants to fail and have the guilt of making a mistake.

Surgeons are looking for straightforward problems to solve without complications. Many spine surgeons have not been spine patients themselves, and if you haven't lived with a problem that then affects something else, and so on, the water can get muddy and you may not recognize a related symptom. They are under a lot of stress to get it right and have a good outcome, and it's easier to pass on a problem they don't fully understand in favor of an easier case because there are many patients to choose from and a backlog waiting to get in the door. Then there is the numbers game of how many surgeries can you do to earn X number of dollars to support your privately owned spine center and turn a profit? It is so much easier to take easy cases that are quicker to resolve and more profitable. They have to discard irrelevant information from the patient, and sometimes, they only listen to what they have recognized before as related symptoms in the past. Not all patients are alike, and some, like me, have an unusual presentation of symptoms that are misunderstood until there is enough literature about that type of case and it becomes more widely known.

The spine device companies promote their implant products and hardware and train surgeons in the use of their devices, so that influences what a surgeon chooses to solve a problem. Not all patients fit into the same predefined solution.

Then there is the question of personality and the reason the surgeon chose his or her profession, and do they have personal problems in their lives that affect them? Mental health issues can affect anyone including doctors who are stressed by their jobs and overworked. I have come across different personalities and some doctors who thrived on their own importance. Fortunately there are surgeons who are humble and gifted, and who like to take on more difficult problems because they want the challenge of solving them. That is the surgeon I chose after all the others had missed the complete diagnosis.

As a patient, the more you know about your condition, the better and more educated questions you can ask, and that will help you figure out if the surgeon is offering good solutions to you. We have to be careful as patients not to diagnose ourselves, and let the surgeon do that, but if they have missed the problem, it's time to look elsewhere. I had the experience of finding the right diagnosis in medical literature after I was dismissed, and none of the doctors who were my providers would help me address it with the surgeon who missed it. Their advice was get another opinion elsewhere, and I did, but I introduced the medical literature at the start, and asked if my case was like this case in literature which allowed the surgeon the task of answering the question, and the satisfaction of it being the correct diagnosis after a successful surgery. They want to know that they got it right and helped the patient giving them improvement in their lives. Theses cases are also discussed at spine conferences, and they need good successful cases that they can teach others about.

Our discussions here are important because patients have to advocate for themselves. It is a responsibility that we must accept, otherwise, we may not get the help we need.

Is there anything you would like add to this list about how to improve the patient experience?