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View Full Version : Anyone in a lot of pain postop and NS blames you?


 

 

 
Memer
05-04-2003, 11:52 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).]

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RageOfAngels
05-04-2003, 03:03 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, 05:14 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
05-05-2003, 12:23 AM
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, 03:52 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 ass, but I can not accept that “the system” is watching out for me. (Besides, if you are going to be a pain in the ass, be a major pain!!! Excel in all things :D )

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

Memer
05-05-2003, 10:31 AM
Cliff,

I'm ashamed of what I'm about to tell you, but I have to because I want you guys to know how much you've encouraged me.

About 6 years ago, I started having pretty bad neck pain. I had had arm pain for years and was told I had tendinitis/bursitis. I went to the doctor when the neck pain started, and he gave me a couple meds and told me to come back in 4 weeks. I took the meds and went back a month later and told the doc that they didn't help. He got angry and said, "That doesn't make any sense." He then told me that I had pulled some ligaments in my neck and I needed to exercise and learn to live with it. So I did, until a few months ago when the pain got so bad that I would scream if I moved the wrong way. I also started to get the electric shocks down both arms. At operation, the disks were found to be calcified, indicating they had been herniated for a long time (obviously at least back to when I was given the diagnosis of strained ligaments). They had to be pulled out bit by bit. Fragments had broken off and moved out of place. The ligaments were also calcified and had to be removed (I'm only 40).

You guys are giving me the courage with your stories to never let this happen again. I get so angry when I think about how long I've lived in pain and that things could have been so much better if I had been diagnosed correctly in the beginning. I think about how much life I have missed because of my pain, and I want to call that doc and let him have it. They think they're God sometimes and that they have all the answers. I've learned the hard way that they don't.

I'm not by nature an aggressive person, but I'm learning that if I want any normalcy in my life I'll have to be firm with these docs. Too bad I didn't know about this board years ago. Things could have been so different. What a waste of these years. The bright side is that I know about it now.

Hugs for you all.

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

IonMan
05-05-2003, 01:11 PM
Memer,

Do not be ashamed, it is part of the learning curve.
It took me a while to include doctors in the "people who I must watch & understand".

With all the time I have had to think since my problems manifested themselves into pressure on my spinal cord I have had plenty of time to think.

I remember way back about 15-20 years ago when I was having shooting pains down thru the right shoulder, elbow, wrist & finally into my hand. I was a young man who had recently moved to the "big city" and needed a doctor, so I contacted the big teaching hospital in town looking for a doctor. I saw this guy a couple of times, but he ordered no real test, just a couple of x-rays, from these he told me that he could not see a problem, there was nothing that could be done for me, and that was it. No pain relief, no plan to solve the problem. Prior to this I had never seen a chiropractor, but as the pain persisted friends advised me to see one. Within 6 months I was free of all arm pain. The chiropractor told me that his x-rays indicated that the vertebra in my neck were lined up one atop the other in such a way that the natural curve was missing. Since then whenever I was feeling any pain for any length of time in my neck, shoulders or arms I would schedule an appointment with him and in a few visits I would be fixed.

Unfortunately this time the chiropractor was not able to relive all the symptoms, although what severe pain I had at the outset he did relive. As I was fighting the HMO for more visits to see the chiropractor, I also decided to take the battle to the doctors (the HMO could not block that avenue, One way or another I was going to spend the HMO’s Money!!) and fortunately I managed to say the right things, the right key words, buzz words, what ever that caused the doctors to perk up and see my condition for what it was. (I still remember that when I said to the EMG guy that “those shocks are not that bad, I get stronger ones when I move my head/neck just right”. Boy, oh boy, that got his interest!!!) I am still amazed at how slow things were at first, (some of these test have to be scheduled much too far in advance I think) but once a couple of tests were performed and other test were indicated & the diagnosis was made, everything speeded up considerably.

Take heart, it takes us all time to “see” the world as it really is, rather than what we think it is. Another reason to question everything. Move forward from this place, don’t dwell upon the past, you can not change it or fix it; you can only control what happens from here on out. Take control, learn all you can!

Cheers
Cliff


PS. I would add that I think the world of my present team of health care providers. I have had the same GP for quite some time now, and we pull no punches when talking. I was and am very happy and impressed with my spine doctor, she is great! Again no BS - straght talk.
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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

[This message has been edited by IonMan (edited 05-05-2003).]

KeithEugeneW
05-05-2003, 09:31 PM
Wow, I feel terrible about all the things you folks have been through with docs who wouldn't listen to you or dismissed your questions or concerns by blaming you!
I am fortunate, in that the surgeon I see for my neck problem in Syracuse is completely the opposite of arrogant. My wife accompanied me on my last visit, and while it wasn't the news I was hoping for, he was very patient, genuinely concerned about the pain I was in, and he took his time explaining to both my wife and I the images on the x-rays and MRIs. He spoke directly to her when answering her questions and used every day language to help explain some of the concepts and issues to us. He was impressed that I had done so much research and understood the problem and the options, including a discussion about artificial discs. He came highly recommended by a friend who had surgery by him recently, and my friend can be a giant pain in the ass as Cliff would say, in getting clear answers on all questions. He was totally impressed with the surgeon due to his personality as well as his skills as a respected spine surgeon, as I am. Unfortunately surgery is not a good option for me. He told me he could operate on me if he was only interested in the money, since I'd be back for several consecutive years getting the discs above the fusion level operated on sequentially as they failed (they are all now degenerating significantly). He's monitoring me for any changes and can operate if it becomes a necessity (if the 2 bulging discs start compressing the cord instead of just touching it as they are now). I am going to get a second opinion for peace of mind, at the recommendations of some friends here on the board, but I have the highest respect for this surgeon and will consider his opinion when receiving the 2nd opinion. I know that there are others like him out there, I hope you all manage to find your way to one when you need help and can avoid the problems some have experienced with arrogant doctors.

[This message has been edited by KeithEugeneW (edited 05-05-2003).]

Memer
05-05-2003, 11:18 PM
Keith,

It sounds like you have found an NS who would say your name or at least "the patient" instead of "the 4 through 6 in recovery." He sees you as human and not as a neck surgery. You're so fortunate to have found him. There's hope for us yet.

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





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