A total NIGHTMARE at the doctor's

[Cookin4Love]

I took DD to see another doctor in the neurology practice today, as her previous physician did not fill out her disability paperwork before he left. There was obviously bad blood between the two doctors, and DD is caught in the crossfire. I can't even begin to describe how terrible the experience was, but this doctor's first meaningful question (after a rude introductory comment about one of DD's facial features) was, "Have you seen a psychiatrist?" He hadn't looked at her films, her file, or her radiology report. When we went in, DD handed him a typed list of the major symptoms--all 25 of them. Yes, it's a lot. That's why we're trying to find out what in the He!! is wrong.

I can only describe the experience as abusive. He wouldn't let either of us talk, drew erroneous conclusions from the few words we were able to get out (such as deciding "tremors" were caused by anxiety or too much caffeine--without ever listening to us try to tell him that they are localized on one side of her body only), and answered his own questions (i.e., on the pin-stick test, he would say, "Can you feel this? Yes. How about this? Yes. See, you don't have any numbness." DD and I were both literally shaking with anger and numb with shock by the time we left. On her disability paperwork, he wrote that she has a "Stage 5 Psychiatric Disorder," apparently because her spinal tap was negative. This information will be provided to her employer. He also told us that "Never in the history of the world has a Chiari malformation caused those symptoms." Funny, because the world-reknowned Chiari Institute says they do! He told us to cancel the appointment with the neurosurgeon because, "You're just wasting his time. Anyway, you don't need to see the best one. You know there are others." He also noted that four of her symptoms are hearing-related. She has almost complete hearing loss in one ear that is caused by nerve damage (unknown cause). It started when she was 18. She has had a thorough work-up and has been told there is nothing they can do for her. THis doctor asked, "Do you have a tumor?" Duh, idiot--you have the MRI and radiology report in front of you. NO, NO, NO! Then he said, "There's an ENT upstairs. It's easy enough to just walk up the stairs and get an appointment. You CAN do that, can't you?" He never would listen to us both telling him that there have already been thousands of dollars spent to have this problem evaluated by a well-respected ENT.

Okay, I need to stop. I am still so angry I can barely think. I have never been so summarily dismissed and shut down by anyone. By the end of his 45-minute tirade, all either of us wanted to do was leave. Unfortunately, he was holding the disability paperwork hostage until he was finished thoroughly telling both of us that her symptoms either don't exist or have some other explanation. (Excessive thirst--we live in a desert. Of course you're thirsty. Not sleeping well? You must have sleep apnea.)

Apparently, there's no way to make this long story short. We went directly to our PCP's office to schedule an appointment with him. We are still going to see the neurosurgeon next week, will try to contact the neurologist who was caring for her until last week, and will file a complaint with the stage regulating agency. We also must figure out how to explain this to the disability insurance company, who insist that all paperwork must come through this office. We are NOT going back. Ever. For any reason.

I'm just crying on your shoulders tonight. I want to punch a wall, scream, or kick something. Of course, that would make me the one with the psychiatric disorder, wouldn't it????

[Beth]

Oh how I ache for you! I have been there. Isn't that awful -- not only that something like that could happen, but that it wouldn't be the only time something so wrong has taken place under the guise of practicing medicine?

For me, it was an exam required by my disability carrier. It was obvious that the carrier had corresponded with him and told them they didn't believe my injury and what they expected. My films clearly showed that a herniation of a cervical disc was across my spinal canal and touching/lightly pressing my spinal cord and there were several smaller problems. In spite of stating tht he had just reviewed thse films and my records, he grabbed my head and forcibly jerked my head around in motions that were obviously forced and likely to worsen the existing injury. I think they were also meant to intimidate me and discourage me from continuing with my claim. I yelped and told him to stop. DH was ready to grab him. He said he was "examining me." Good thing he wasn't a gynecologist!

It's been years now, and I really don't want to remember more details, but I have never been so angry or so shocked by a professional's behavior. I never wanted to inflict physical pain on a doctor before, but had I not been in shock, that would have been my reaction. DH and I left, got in the car, and said nothing for a couple of minutes. Our mouths hung open and we couldn't speak. The first thing I said was, "Did that really just happen?" I could have been seriously injured by what he did. Fortunatley, that didn't happen, but I had a lot of pain and other problems for 6-8 weeks.

I did file a complaint with the state board of medical examiners. They wrote back that they had no jurisdiction over work comp complaints. I couldn't believe that they were telling me that a doctor could do anything with no recourse in a WC situation to begin with (don't get injured at work in Texas, folks), but this wasn't a WC issue. We have followed up several times, but nothing was ever done -- the file seemed to fall into a black hole.

I wanted to file criminal assault charges against the man. I would have, but as we drove away and began to talk, I realized there was no way I could prove his intent or my injury. Add feeling defenseless to the situation.

We did write a long letter to the disability carrier detailing what had happened and that I would under no circumstances ever return to that doctor and that I would hold them accountable if I ever saw another professional whose treatment of me endagered my safety and well-being again.

I wish I could tell you I had some great vindication or that the doctor got his license yanked -- even for a day, but all I was able to accomplish was the fact that the insurance carrier never openly relied on that report for anything.

You must report this doctor to the insurance carrier, the state authorities and to any referring physician. Push them to do something. But most of all, keep being the advocate your daughter needs to try to figure out what is happening to her and what she needs to get better. Things began to get better for me after the next doctor I had to see, adn I hope they will for you and your daughter too.

BTW, I had another doctor who did the fly across the room on his wheeled chair and yell in my face routine, another who tried to reason with me about why I didn't want to return to work after I had stayed at work until they saw that I only continued to get worse and they took me out. I had folks make stuff up. It's hard to believe if you've never seen it first hand.

I wish I could offer you more than my understanding, outrage and support, but I hope it will mean something to have someone tell you they believe you and that there are some real jerks out there. The M.D. after their names doesn't improve their character -- it just magnifies it.

Again, all my best to you and your daughter. I want this saga to come to a happy ending at long last. Enough already! Hang in there! ((( )))

[clairea]

(((Cookin4Love)))). I have been there with rude and insensitive doctors at a time of crisis, too, and I know how incredibly frustrating it is. Your daughter is very fortunate to have you to continue to advocate for her, and sometimes being the advocate for a chronically-ill patient makes me feel like a world-class b!tch. Definitely keep following up with other doctors, because there are caring, considerate doctors out there who will work with you and your daughter to find out what is causing her problems and figure out how best to treat them. Also, I would check with the disability company and possibly DD's employer. If the paperwork that this dr. filled out is inconsistent with prior exams then perhaps a third opinion is in order.

[beejayw1]

I took DD to see another doctor in the neurology practice today, as her previous physician did not fill out her disability paperwork before he left. There was obviously bad blood between the two doctors, and DD is caught in the crossfire.

Good grief! Words fail me. :confused: :eek: :mad: :eek: :mad:
I am completely astonished.

Beth is right: You must report this doctor to everybody and his brother. Make a list of what he did not do (you did a pretty good one in your post):
Did not read the charts. Attitude - you name it. Tell everybody.

I can't even begin to describe how terrible the experience wasI want to punch a wall, scream, or kick something. Of course, that would make me the one with the psychiatric disorder, wouldn't it????

No, it would make you an angry person who was a victim, with her daughter of a humiliating, dehumanizing experience and is reacting in an understadable fashion.

[lindrusso]

I can feel my blood beginning to boil just reading about it, so I can't imagine how you must feel!

I don't know what to say other than I hope your future experiences are positive and helpful. :(

And Beth - that is crazy!

I have had incompetent doctors, but never anything like what you two described. Yikes.

Take care.

[zwieback]

How aweful! I want to punch and kick the wall right along with you! PLEASE report this doctor to anyone and everyone possible. I hope your daughter is able to switch doctors as well. I'd do that immediately. :( :mad: That doctor should have his license revoked.

[KristiB]

I'm really sorry you're going through this. You need to report it.

((HUGS)) to you and DD!

[jjsooner73]

I'm so sorry you had to go through that!!!!! I can't even imagine how you must feel. Do report this to anyone and everyone; hopefully someone will listen!

Hugs to you and your daughter!!

[zippy478]

Wow is all I can say to describe this. I was hoping that maybe, just maybe, a different doctor in that practice would be a little more empathetic to you and your daughter's situation. I third, fourth, fifth the others who say report this to everyone and anyone you can. Email all your friends and family warning them about this guy. Heck, even call your local TV station's consumer unit and tell them about your experience. Seems crazy but it will probably at least get some attention.

I really hope that you and DD find a dr. that you are comfortable with and that validates your concerns and begins to treat them. Good luck and (((hugs)))

Maura

[GingerPow]

((((((Cookin4Love & DD)))))))

What a story. That S.O.B. "Doctor" should not be practicing medicine with actual people. He should be locked up in a research lab somewhere, far away from human interaction. If anything he is hindering proper patient care, not helping at all. Yeah, if this were my kid I'd have been grabbing him by his white coat and shaking the living daylights out of him --- or at least tempted to.

"...this doctor's first meaningful question (after a rude introductory comment about one of DD's facial features) was, "Have you seen a psychiatrist?'" I'd tell him, "No, have you?!?"

I agree with what has been stated: report him, and look for another doctor. He can't be the only one around? Keep looking until you find someone who listens and helps!

(I went for a long time trying to get someone to believe I had a hypothyroid condition. I was sent to a specialist - another arrogant SOB - who wanted me tested for Lupus, despite my list of obvious and classic hypothyroid symptoms and family history. I looked like I swallowed an inner tube...hello? Classic first symptom! :rolleyes: I stood up, told him that I was finished with him and walked out. I kept at it and kept at it. Finally found a sensitive doc who helps his patients, does not demean them.)

I'm sure you've thoroughly checked and researched her condition inside and out. It appears you need to move on from the current medical "professionals" :rolleyes: DD is dealing with. I'm just brain storming here...

Do you have a major medical center or a University medical center within driving distance?
Can you call any of the places listed below to see if they can point you to someone, even if it means a trip in an airplane?
http://cgi.stanford.edu/dept/neurosurgery/cgi-bin/find_specialist?action=get_description&disease=chiarimalformation
http://www.mayoclinic.org/chiari-malformation/index.html

Check out this Stark & Stark Brain Injury Lawyer's blog addressing legal issues re: Chiari I Malformation. http://www.braininjurylawblog.com/about-brain-injuries-chiari-malformation.html

Sending prayers and best wishes to DD and you.

[newtricks]

I'm so sorry this happened and agree with everyone else that you need to report it.

Just a thought about the doctor who is leaving. Is it possible that he left because this guy's an abusive jerk? And I know you feel that he left you in the lurch but he was just trying to get the heck out of dodge? Maybe there's a way for your daughter to continue seeing doctor #1 - for continuity's sake. This only applies if you liked and felt comfortable with him in the first place.

[BarbaraL]

What a terrible experience! I'm so sorry you and your daughter are going through this!

In addition to what everyone else has said, I'd:
1. Report the guy to the American Medical Association
2. Report the guy to any medical associations with which he is affiliated (board certified specialty, etc)
3. Report the guy to the state licensing board
4. Write to the practice, stating what happened and what you're doing about it.

[Peggy]

What a terrible experience! I'm so sorry you and your daughter are going through this!

In addition to what everyone else has said, I'd:
1. Report the guy to the American Medical Association
2. Report the guy to any medical associations with which he is affiliated (board certified specialty, etc)
3. Report the guy to the state licensing board
4. Write to the practice, stating what happened and what you're doing about it.

Everything she said! Such rude, insensitive and unprofessional behavior must be reported to the associations that can do something about it. :mad: File complaints to everyone. Also the Board of Medical Quality Assurance in your State.

Peggy

[Robyn1007]

OMG! Words cannot describe how angry this makes me and I'm not personally involved.

I had a very comparatively minor incident one time where a doctor told me I needed to come in ASAP after the results of a test and then walked into the office when I was there and asked why I was there. :eek: She blew me off and I pitched a fit. I got in contact with the administrator of the practice (multiple doctors in practice) and pitched a fit. She took good care of me, got me in for another, complimentary, appointment where it was decided that I needed further tests. Reading your story just brings back all of the anger and hurt and confusion and fear I felt at the time (I was 25 looking at possible colon cancer and had no family around to help me). The practice later fired the doctor in question so apparently I wasn't the only one who had a problem.

You and your daughter are in my prayers, and please, report this to everyone you can think of, including her insurance company. They should yank their endorsement of the doctor also.

Robyn

[dreamer]

Oh, Cookin4Love, I feel so awful reading about your horrendous experience. Makes me sick with distress and empathy and anger. Like so many others have said, I too have had "bad doctor experiences" and they are so traumatic-- when you are already sick and down, and then the first thing they do is some version of blame the patient/family and/or question your sanity. I didn't know, in earlier years, that I wasn't the only one experiencing these things- that unfortunately I had TONS of company. I have often wondered why there aren't lots of books written about this, and a citizen's advocacy group forming.
Please know you are not alone. It sounds like you got through it as well as anyone could. It is true, there are better doctors out there. I am sending you prayers of comfort, and hope that your luck will turn around w/ doctors (and for DD) before you know it.

[aggie94]

Sorry for your and your daughter's experience.

In case you were not aware, you can look up any Arizona physician's disciplinary history and malpractice information, although not all complaints will lead to any disciplinary action, and no disciplinary action does not necessarily mean the physician is "good." Still, it's a handy tool in case you were not aware of it:

Arizona Medical Board (http://www.azmdboard.org/)

You can also file a complaint online at their site. Good luck.

[colleency]

(((((((Cookin4Love + daughter))))))))

OMG! That is so horrible! You don't need the kind of physician treatment you've been getting on top of all your worry! What a horrible man! I hope everything works out. I'm sending positive thoughts your way!

[ChristyMarie]

No one should ever have to experience that type of treatment. Ever. I agree with everyone else - file complaint after complaint. File until you find someone who will listen. And last time I checked he wasn't a psychiatrist so where does he get off diagnosing a psychiatric disorder after one brief medical visit?

Then search and search until you find a doctor who will listen to you. I was blown off and misdiagnosed for about 4 years until I found my current RE. Good doctors are out there, they are just really truly hard to find sometimes.

My heart goes out to you and your daughter.

[Paula H]

(((Cooking4Love and DD)))

Wow. That truly truly sucks. I agree with BarbaraL's advice - report him to everybody and everything.

Good luck to you both!

[mbrogier]

(((Cookin4love & DD)))

I wish I could say that those doctors aren't around, but they are. I had one in a hospital last year tell me I was crazy. I went off on him (and so did my roommate who was in the same boat as me.) I also reported him to his supervising doctor who tried to defend him. I just looked at her and told her that he would have said nothing about my symptoms being in my head if I were a man. If you're a woman and have hard to diagnose symptoms/pain, you're blown off as a whack job. She admitted that was true and apologised. She sent that doctor back into my room, and I gave him a few lessons in patient care. :D (He was a new doctor right off of residency. He was still in that "I-know-everything-and-if-you-don't-fit-into-my-mold-you-just-must-be-looney."I was nice and gracious to him for coming back in to apologise. I hope he learned something from me. The system has got to change from within at the patient level. We're dealing with a bunch of bullies--the I became a doctor because I can be superior to you and decide your fate. I hate that and won't stand for it. If you want my money, you're going to treat me well. I can and will find a new doctor.

I just had one of those horrible patient experiences last night. I told about it in the other thread. What kills me is that Rob is more narcotics for his nerve damage and never gets treated like I do. He does have chronic pain, and I don't. I just hate that I get blown off because I'm a woman. --a young woman.

Cooking4Love. Hang in there. You WILL figure out what's wrong with your DD and will find the right doctor. Just keep at it. Try to find doctors that specialize in young people's disorders. They tend to not blow you off under the you're-too-young-to-be-that-sick excuse.

[Cookin4Love]

Thank you for sharing your stories both here and on the other "doctor threads" to remind me that we are not alone. I would like to respond to each and every one of you, but in the interest of time, let me just say a heartfelt thank you to each of you who has taken time to respond and reach out. Some of the websites we had seen, and some we hadn't. We are compiling information to develop a formal complaint. We went to the office yesterday to get a copy of her medical records. Interestingly enough, they did not contain the new doctor's office visit notes, which we will note when we do file a complaint.

It was also interesting to note that the MRI report (which was in the records we received from this Bozo's office) indicates a 7 millimeter herniation of the cerebellar tonsils. Without going into the full details of Chiari, let it suffice to say that it sometimes requires surgery with no herniation, and anything over 5 millimeters with symptoms is considered significant in any case. That should be interesting to send to the licensing agency along with the paperwork he filled out saying that there are no objective physical findings, including labs, MRIs, and x-rays.

Additionally, DD heard from a friend today, who hooked her up with another friend whose mother is a neurology nurse. Apparently, this doctor has quite a reputation, and this woman knew of two people who had filed complaints against him. She had, in fact, advised her own daughter to see anyone except him when she had a neurological issue to deal with.

We feel it will add strength to our complaint to receive a diagnosis and treatment plan from another physician before file. We are definitely going to proceed with it--we just want it to pack as much punch as possible.

Again, thanks for all your continued support.

[ChristyMarie]

Your daughter is so lucky to have someone in her corner like you. When I was going through my huge endometriosis battle my mom was pretty much content to go along with the doctors - I was 18 when it started, what did I know? I would have loved to have a mom who was so supportive and proactive.

(((Hugs)))

[lindrusso]

Your daughter is so lucky to have someone in her corner like you. (((Hugs)))

Ditto that! :)

You are doing a wonderful job. :)

[AzAnne]

Wow, with so many excellent dr's in the phx area I'm sorry you got this royal jack a....
I would make sure everyone knew how bad he is, he shouldn't be allowed to have any more patients, no matter if he's supposedly the best

Good wishes and prayers to you and your DS that a good dr. and quick diagnosis's comes soon

[Terri_A]

I had an appt today with my neurologist ( I'm epilileptic ) but the last thing I asked him was if he had a colleague he trusted in AZ, but alas, no luck.

Hopefully you will soon get the diagnosis and nail that dr. to the wall.

Good luck and how is your daughter feeling????

Afterthought - there was a recent episode of "Mystery Diagnosis" on the Discovery Health Channel that surrounded around Chiari Malformation and there is a doctor they discussed who seemed to go above and beyond for his patients. You might want to check their website and see if you can find his name - he would be worth traveling to take your daughter to see him!!!

[Cookin4Love]

I had an appt today with my neurologist ( I'm epilileptic ) but the last thing I asked him was if he had a colleague he trusted in AZ, but alas, no luck.

Hopefully you will soon get the diagnosis and nail that dr. to the wall.

Good luck and how is your daughter feeling????

Afterthought - there was a recent episode of "Mystery Diagnosis" on the Discovery Health Channel that surrounded around Chiari Malformation and there is a doctor they discussed who seemed to go above and beyond for his patients. You might want to check their website and see if you can find his name - he would be worth traveling to take your daughter to see him!!!

Okay...I think you officially get the "Above and Beyond the Call of Duty Award." :-) I'll see if I can find the information on the Chiari episode, too. Thanks. :)

[donnamp14]

((Cookin4love and DD)) I've been reading about your problems and totally understanding your anger and frustation. On top of the worry, you have to deal with abuse from the staff as well as a neurologist! I just wanted to tell you to hang in there. You are DD's best advocate and her doctors' strongest ally, if they'll just give you the chance. DH had 7 years of chronic pain and was sent from doctor to doctor, hospital to hospital, until we finally found someone who listened and then understood! And then he had to fight for the surgery that was untimately 100% successful. It's awful to have to fight the system like this.

You're both in my prayers, for both health and strength.

-Donna

[alicerh]

Since you will be needing to find a new Dr. I would suggest first, if at all possible, find one at a medical school and one Board certified. Since you know the disease you are dealing with, call the department at the school to see if they have anyone who has indepth knowledge of this disease. Lastly, make an appointment just for you to start so you can meet the doc and find out his approach and manner.

Good luck

[clairea]

((((Cookin4love)))). I can't believe how that doctor treated you. You are doing such a good job advocating for your daughter, and she is so lucky to have you. It is really unfair, and I have broken down in tears more than once trying to explain to people that when you are caring for someone who is seriously ill the last thing you need is the medical providers giving you a hard time or letting you down.

If the doctor is affiliated with a hospital, I would suggest that you see if they have a patient advocate or ombudsman program. I have found these to be tremendously helpful with all kinds of issues from not getting phone calls returned in a timely manner to getting bills straightened out. Sometimes insurance companies will also have an avenue for filing complaints as well, and this is worth looking into. If they get complaints about a particular doctor several times (even if they all come from the same person) they will frequently contact the doctor to see what is going on and if there is a consistent problem they will bring their influence to bear to try to resolve it as well.