Changing Doctors

[Tina_R]

Yes that is correct. I have seen one. They look at the whole person. They work with you and can help find out your strengths and weaknesses. If one leg is weaker the Doctor can make suggestions to help improve. I know you want clear answers but sometimes getting a little help will improve your situation. It's worth a try and is non invasive.

I had only a vague sense of what a physiatrist is and lumped them in with healers I would never think of trying, like chiropractors and acupuncturists. I think the word "holistic" being associated with them is what does that for me. But maybe that's wrong and I should try a physiatrist. They are real doctors, after all. Heck, maybe I should try acupuncture, too, which one of my neurologists practices. Thanks for the suggestion.

[Tina_R]

Only if the institution where you were treated acquires another institution where you want to be evaluated.

Institutions in my area have merged into two or three major monolithic hospitals. They are like the Amazon and Google of my area. This is the way the world is going -- monopolies. It's bad for getting unbiased diverse opinions if all the elite spine surgeons work for only two hospitals. I might have to travel far away from here to get a second opinion. Which is ridiculous, because there are plenty of doctors here.

On the other hand, if there is information in your records that is true, and makes it appear that you were a difficult patient, you might consider writing to your surgeon, explaining about your frustration, being careful to not blame them. While I'm sure it's difficult for surgeons to treat patients that make it seem like they're being blamed or accused of doing something to cause a poor outcome (I'm not saying that's what happened with you), they're typically smart and compassionate individuals, who want you to get better.

Are you saying I should write to my surgeon and apologize for anything I might have done that made it difficult to treat me? This isn't going to get me back into his good graces. True, I didn't follow every last edict of his and I had good reasons. But my biggest crime is that I had a bad outcome and patients with bad outcomes get shunned by some doctors. We make them look bad so they want us to disappear.

He's already ghosted me when I needed care, which I consider unprofessional. Can this patient-doctor relationship be fixed after something like that?

I never blamed him for causing this. Maybe he caused it, maybe he didn't, I don't care. It's a difficult, risky surgery. Stuff can happen. I just want to be fixed if I can be fixed. I wasn't seeing any action, just avoidance and assurances that there was nothing wrong. Then finally after too long a time, a curt "Go see a neurologist".

I'm not saying you did anything wrong, but if you can't get help from anyone, perhaps it's a good idea to switch strategies.

I never said I couldn't get help from anyone. Of the other doctors I consulted, no one can figure out what the problem is, and some of them point to each other. The surgeons say it must be neurological, the neurologists say it isn't. There's not enough evidence for any diagnosis.

[Tina_R]

Probably. The notes from each of your office visits. In many clinics, I think the office visit notes are not part of the hospital record.

If they're not part of my medical records, do I have as much right to see them as I do my medical records? And would I have to get them directly from the physician rather than from the medical records section of the hospital?

[jackieg412]

Yes that is correct. I have seen one. They look at the whole person. They work with you and can help find out your strengths and weaknesses. If one leg is weaker the Doctor can make suggestions to help improve. I know you want clear answers but sometimes getting a little help will improve your situation. It's worth a try and is non invasive.

[Tina_R]

Tina you could also try a different specialist. If you were treated by an orthopedic go to a neurosurgeon or a Dr of physical medicine. That actually may help you the most. A Dr of physical medicine can look at the whole body to determine if something else can cause your symptoms.
And as much as it is difficult to live with, not everything has an answer that can lead to treatment. Sometimes it isn't one answer.

I've seen a neurosurgeon.
I'd never heard of Dr of physical medicine so I googled it and it's probably the same as physiatrist. I've never considered one of those. Have you been to one?

[jackieg412]

Tina you could also try a different specialist. If you were treated by an orthopedic go to a neurosurgeon or a Dr of physical medicine. That actually may help you the most. A Dr of physical medicine can look at the whole body to determine if something else can cause your symptoms.
And as much as it is difficult to live with, not everything has an answer that can lead to treatment. Sometimes it isn't one answer.

[LindaRacine]

"Clinic notes" -- would this be part of my medical records?

Probably. The notes from each of your office visits. In many clinics, I think the office visit notes are not part of the hospital record.

[Tina_R]

Only if the institution where you were treated acquires another institution where you want to be evaluated.

If you're concerned that your surgeon will share information that might influence other providers, I would recommend that you get a copy of all the clinic notes. Read them over carefully. If anything is incorrect or untrue, you can challenge that information and ask that it be revised.

--Linda

"Clinic notes" -- would this be part of my medical records?

[LindaRacine]

With hospitals merging all over the place and everybody part of a very few big families it's hard to get a second opinion that isn't going to be influenced by the first opinion, isn't it?

Only if the institution where you were treated acquires another institution where you want to be evaluated.

If you're concerned that your surgeon will share information that might influence other providers, I would recommend that you get a copy of all the clinic notes. Read them over carefully. If anything is incorrect or untrue, you can challenge that information and ask that it be revised.

On the other hand, if there is information in your records that is true, and makes it appear that you were a difficult patient, you might consider writing to your surgeon, explaining about your frustration, being careful to not blame them. While I'm sure it's difficult for surgeons to treat patients that make it seem like they're being blamed or accused of doing something to cause a poor outcome (I'm not saying that's what happened with you), they're typically smart and compassionate individuals, who want you to get better. I'm not saying you did anything wrong, but if you can't get help from anyone, perhaps it's a good idea to switch strategies.

--Linda

[Tina_R]

I don't know about everywhere, but at UCSF, all doctors have access to all patient records, provided there's a medical reason for accessing a record. I suspect a patient could opt to have their records locked, though it seems there might be some danger in doing such a thing. Most institutions also allow patients to opt in to sharing records between institutions.

With hospitals merging all over the place and everybody part of a very few big families it's hard to get a second opinion that isn't going to be influenced by the first opinion, isn't it?

[Tina_R]

Tina...

It depends on the surgeon, and whether you've enrolled in a study. After a year or two, there's no actual reason to see your surgeon, as long as everything is going OK. If you have significant new symptoms (for more than a week or two), you should definitely make an appointment. If you're enrolled in a study, you've agreed to be seen at different intervals, usually up to 5 or 10 years postop. While it can be a pain in the butt to go in when you're doing well, there's definite benefit to continuing participation in these studies, as that's how they know what works and what doesn't.

--Linda

I doubt I was enrolled in a specific study. I was asked if I would allow my medical information to be added to a database, presumably to be available for statistics. I was all for it and started to fill out a questionnaire for that purpose. I was rushed to do some test or something and never completed the questionnaire on the tablet they gave me, so I think it was lost. Because I didn't complete it, I don't think I was ever added to the database. I mentioned it later but no one seemed to care. Yet another thing that ticks me off about the hospital I went to.

[LindaRacine]

I don't know about everywhere, but at UCSF, all doctors have access to all patient records, provided there's a medical reason for accessing a record. I suspect a patient could opt to have their records locked, though it seems there might be some danger in doing such a thing. Most institutions also allow patients to opt in to sharing records between institutions.

[Tina_R]

I think it probably depends on the center, and whether or not you have access to other specialists close by. At UCSF, they usually make it very difficult for patients to see multiple spine surgeons in the same practice. I also think it's less probable that two surgeons in the same facility will disagree with their partners.

Linda, this answer has been bothering me a bit and one thing I don't understand is, how will the second doctor know what the first doctor concluded? Isn't that a breach of patient confidentiality, or is patient information open to all doctors at a given facility?

[Tina_R]

There's no need to see your surgeon after a year or two...as long as everything is all right.

Nothing has ever been all right for me, though. I haven't reached the "all right" stage.

[KathyInIowa]

At UCSF, the standard of care for deformity surgery follow-up is 6 weeks, 3 months, 6 months, and 1 year.

--Linda

I had my surgery at Twin Cities Spine Center and my first year follow up was the same as what Linda said about UCSF.

Kathy