Anyone in a lot of pain postop and NS blames you? - Spinal Cord Disorders Message Board

Memer · 05-04-2003, 08:52 AM

Hi everyone,

I went for a postop visit and told NS I was in a lot of pain. First, he said that I was doing too much. I told him that wasn't true, so then he examined me and said I may have a new herniated disk. He kind of acted like it was my fault. He said something about my build (tall and thin). He said I should have no pain at this point. He made me feel terrible, and I was up until 3 a.m. crying and depressed. By the end of the visit, he was nicer, but I still feel pretty bad about the whole situation. Anyone been there?

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[This message has been edited by Memer (edited 08-04-2003).]

RageOfAngels · 05-04-2003, 12:03 PM

OH, oh yeah....I have BEEN there. First off, I am so sorry that you were treated this way, that is truly terrible. Doctors can be the most horrific people sometimes.

My story is pretty bad too but with a different condition. At age 16 (I'm 40 now) I began having many bladder-related problems, and went to a urologist whose initials are T.H. in NYC (I will not post his name due to the Healthboard posting policy, but God knows I want to). He (and his secretary) were the most cold-hearted creatures imaginable, but he was supposed to be one of the best in his field. And at 16, scared, confused by what was happening to me, relying on the adults around me for help, I nonetheless sought to trust him. After all, he was the doctor, and I was just a kid (especially emotionally).

Well, when his standard efforts to treat me failed, rather than ask the right questions and put me in the right tests, he told my father that it was all "in my head" and that my "illness" was psychosomatic. That was bad enough, but things dragged on and my condition got worse....

Finally, as things got progressively bad, eventually someone wised up and put me through a (painful) battery of tests, but at least they discovered the problem - 2 tumors growing right on my spine in the lumbar region, a form of spina bifida. I got operated on not too long after that my a great surgeon named Youst Michelson, but it was too late to reverse the damage that had been caused to my nerves to the bladder and bowels. I went from being able to go to the bathroom normally to having to use catheters and other devices just to empty myself. Mind you, just having a catheter put in me ONCE was enough to traumatize me, now I had to use them a few times a day, every day! Talk about your worst mightmare come true.

His answer to my distress and pain over how this all turned out? He BLAMED ME - right to my and my father's face - by saying that we withheld information from him that could have resulted in a quicker diagnosis of the problem. Problem is, he never asked any questions about these things that I supposedly "withheld" from him, and he assumed that somehow I should have had the medical knowledge to make the connections between these things. I and my father are not doctors, and I had no medical knowledge to speak of back then. I would never have made any connection to any of these things and my problems at the time, which is why I needed a professional in the first place!

So, I am crippled as a result of this guy's hard-hearted negligence and incompetence. I wish to God I had taken him to court back then, but we had no money, I was too passive and hurt and confused at the time, and shortly after my operation, my mother died unexpectedly and then I was set to start college! It was a tumultous time for me back then and the only thing I could do was just try to survive it all.

I did learn alot from this though, and today I am a totally different person. Now, I go into a doctor's office often knowing more about my condition and it's treatment than the doctor knows. 2 years ago when I had my last spinal surgery, I had to push to get 2 doctors to put me in an MRI, where my diagnosis was proven right and theirs was completely wrong. And one of them was a head of emergency surgery at a major hospital! But this shouldn't be! The doctors should ask the right questions and listen to the patients and put them in the proper tests right away. The state of medical care in this country needs some serious improvement to say the least.

Sorry for the soapboxing, but hopefully this is the type of story that you were looking for. The best advice I give people now is not to be a "passive" patient - find out as much as you possibly can about your condition, about the various treatment options, about alternatives to drugs and surgery, etc. - just be informed and know how to ask the right questions and not get too blindsided. Don't end up more damaged because you blindly and passively trusted a doctor and did not get involved in your own care. Doctors make mistakes, and they are not always right. Don't take their cruelness personally, because some of them are just plain cruel to everyone. Keep pushing them for answers, for treatment, and hold them accountable for their errant behavior and comments. Be strong and don't back down, you are a valuable person and deserve better treatment!

Cheers,
Al

HERMIT · 05-04-2003, 02:14 PM

Angels hit the nail right on the head. You have no reason to feel humiliated. These specialists are so arrogant at times it makes me sick. Went through the same thing--spinal cord tumor from brainstem to shoulderblades. Went back in extreme pain and he said"you do not appreciate what I did for you--live with it" I tried to live with it--lost 70 pounds and severe depression from pain. Like angel said--finally got educated about my condition and get arrogant right back at them. Went for MRI last summer--sat in machine for 2 hours then went up for appointment with neurosurgeon. he was 5 hours past my appt time and was still waiting. Walked down to secretary and told her I was going home--10 hour drive to get there. She looked cooly at me and said "you wouldn't dare leave". I said watch me and furthermore if i had a secretary that botched appointment times like that i would fire you on the spot. I may have annoyed someone because I have not heard back yet from him--lol. Trust me--don't take no for an answer till you get the help you need.

Memer · 05-04-2003, 09:23 PM

Hermit and Al,

Thanks for the encouraging words. "Passive" is the right word for the way I have been regarding my health. I really have taken some things personally when I shouldn't have. I know how arrogant doctors can be, yet I let it get me. After giving it some thought, I realize that the NS must think he's so perfect that there's no way anything could still be wrong with me unless I've done something to hurt myself. He must have forgotten that my first words to him in the recovery room were that I was in more pain than before surgery. Thinking back on my last visit with him and what he said, he wants a 100% success rate, and I guess I'm messing with his numbers. That's not my intent, but it seems that he took it personally. We're all human.

It sounds like you guys have been through way more than I have, so I have no reason to sit on the pitty pot. I'm amazed that you can still find encouraging words for someone like me. Thank you so much. Your stories have really helped.

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[This message has been edited by Memer (edited 08-04-2003).]

IonMan · 05-05-2003, 12:52 AM

Hello,

(Sorry for the long rant here, but you touched a vein here, it is venting time)

All too often in my life I have seen instances where some “professional” who by virtue of their title or alphabet soup after their name or just by their position or the volume of their workload don’t stop to consider the people who they are working with, teaching or responsible for.

When people start telling me that “this is the way it is”, I make them explain what they mean & anything else that bothers me or anything I do not understand about the situation.
When someone tells me it was my fault they had better be prepared to fully explain the who, what, where, when, ect.. I make people explain off hand flippant remarks, if it raises any question in my mind.

I used to be one of those people who assumed that those running the show must know what they are doing, so just go along. But no longer. Authority figures no longer intimidate me. I arm myself with as much knowledge as I can. I am a techie by trade & training. If I do not understand something I ask questions. If I don’t like the responses, I ask more questions. I question many things, from the fine details, to what the actual decision making processes are. I know that I can be a pain in the ***, but I can not accept that “the system” is watching out for me. (Besides, if you are going to be a pain in the ***, be a major pain!!! Excel in all things

)

I started questioning authority & looking out for myself in college. I went into the military from high school, then to college. I was having trouble one day early on in college in one of my electronics majors. The instructor just was not getting the theoretical concept across to me, after a couple of minutes of discussion he told me that I was holding up his presentation and that I should arraign to see him after class. I stood up & told him that I was not a kid straight from high school, I had been working on electronics for 4 years in the military & could fix it, I was here to understand it & that I was not going to let him to proceed with a lecture on a topic that I did not understand the basic concepts for. I was paying for this education out of my own pockets and I was paying him to teach me. Rather than get huffy he started to ask me what I was having a problem with. Within 15 min the proverbial “light went off in my head”, I got the concept. I am sure there were others in the class who were struggling as I was, but did not want to draw attention to themselves. The lecture then continued, and I was able to understand & follow it without any problems.

After many years as a technical representative between my company & companies such as IBM, Intel, TI, AMD, Motorola and other names we all would recognize, I have learned many of the “stop you in your tracks” questions that a “customer can ask a vendor”. I use this knowledge to work the system, as I consider myself a “customer” and doctors, hospitals, HMO’s and just about everybody else I deal with in the “real world” as a “vendor”.
Take charge be a “customer”.

Bottom line, takes charge, ask questions, learn & try to understand what your doctors tell you. Other than what I have learned on my own, all I know about the human body I have learned on PBS, TLC, Discovery channel, ect.. I make my doctors talk my language, the language of a mechanical & electrical / electronics engineer. I compare the functions of things to those of things I already understand.

My attitude is: “It is my money & my body, I deserve to understand” & you do too.

Cheers
Cliff

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Cervical myelopathy with frank cord compression from bony impingement.
22 Apr 03 C5 corpectomy, a C4/6 strut graft with allograft bone, titanium plate