The night the neurologist threw a tantrum and stormed out of the hospital with me crying after her to come back was one of the worst experiences of my life. Until my husband almost stopped breathing due to too much narcotic pain medication and almost pulled a "Michael Jackson" as the Hospitalist so nicely put it. I thought things couldn't get any worse, but of course, I'm naive.
My husband is in the hospital for severe, unrelenting pain from trigeminal neuralgia. The usual drugs aren't working. The doctors cannot figure out what mix of chemicals to throw at his pain to suppress it. We wait 12 hours for his neurologist to come see him in the hospital. She is our only hope. The hopitalist has told us he has no idea what to do, this is above his head. The RN's don't know what to do. The charge nurse asks me why we brought him to her hospital and not another one.
What?! I'm sorry. There's a sign outside that says Hospital. Emergency Room. We crazily believed you. We didn't realize when we got inside what we had going on was really a Clinic of some sort. Somewhere in Kenya, somebody is getting better care than we did provided by Doctors without Borders or something. And our PCP and neurologist are based here. Why are you asking me that question? Is there a secret code I missed that directs patients to the "right" hospital vs. the "wrong" hospital? And how did I miss seeing that?
It's 6:30pm, I see the neurologist walk past our hospital room. "Dr. R.!" I call out to her. She turns around and says, "I'm avoiding Ken." My dense brain doesn't get this. She sighs and comes into our room. Ken is in pain on a scale of 10/10. He's on morphine which doesn't touch it. She starts to scold us for coming to the ER and getting hospitalized. We stare at her uncomprehending as she rails against our admission: The hopitals can't help us, they don't have a neuro-surgeon, they'll just give Ken narcotics, what were we thinking? Ken managed to squeak out: "What did you want me to do? Stay home and hang myself?" She glares at him and says, "Don't you dare talk to me like that. I work here every night until 10pm and I have a daughter at home. I don't have to take this."
My husband, in agony, sits up straighter on his hospital bed and with all the outraged dignity he has left says, "Dr. R., don't let the door hit your ass on the way out." She chokes, grabs her bags and whirls out the door, me staring at her in disbelief. Did our neurologist just leave us at Ken's most critical point? I run after her. She goes to see another patient [hmmm, why are her patients all in the hospital?] She is agreeing with them that they need a second opinion. [Like we did?]. I have the charge nurse bring her a note to talk to me when she comes out. Instead she walks out, doesn't look at me, marches past. I cry, "Dr. R., you know he's cognitively impaired!" She yells back, "I'm done, it's over."
Oh my God.
You have to admit, my husband has balls. He's in the worst pain of his life and still manages to tell his neurologist where she can go when she's being unprofessional and downright childish. Sorry Mrs. Neurologist that you have to deal with neurological symptoms in your patients. Our bad. We'll try to do better next time. Maybe just come to see you for a simple headache. We don't want to keep you. We're just yukking it up here in the hospital room, having a downright lovely evening. Would you care for a glass of champagne?
This chick is toast.
My husband fights for his life. In his delirium he tells me:
"I've never been a quitter. I can't figure out how to quit. I'm trying to figure out how to quit."
"What's happening? I'm confused. I don't understand."
"Will you take me home? I just want to go home."
"What's the plan? We need a plan. Tell me the plan."
He verges on respiratory distress from the amount of drugs he is taking. But without them he has intolerable pain. This is Hell. You couldn't design it better. I feel angels all around us; he is actually re-enacting the crucifixion in all of its' agony. Is the crucifixion merely a template that we must all experience at the end?
I watch this brave, daring man struggle with all of his might to either win this fight, or quit it with dignity. I shudder at his pain.
TIP:
Enter the amount, and click "Tip" to submit!
Nikki Stern
BuffyW
Sally Swift
Lainey
Kathy Knechtges
odetteroulette
Salon.com
Comments
Send a copy of this post WITH THE DOCTOR'S NAME in it to the Hospital's CEO or President. I am deadly serious here.
Physicians (who don't work for hospitals, as well you know) need to have their asses kicked from time to time. Generally it's tough to find enough reason to do it.
This is enough reason.
I hope your husband's pain can be managed. God, I am so sorry.
I was a bit irritated and his response to me was "we have people here who are worse off than you". his tone was quite arrogant. Well, gee, I guess a nearly fatal medical condition isn't really that serious.
One problem is that we tend to glorify doctors and have the attitude that as long as they are saving lives then there is no pay that is high enough for them. Most doctors today are in it for the money, not because they give a crap about the patient. Doctors are nothing more than glorified mechanics and should be paid accordingly.
Overall, medical care in the U.S. is not good, but it is the most expensive in the world. Doctors are the eighth leading cause of death in the U.S.
May I suggest that you get yourself to the nearest university medical center and seek out a top specialist? Stop messing around with the yokels.
My thoughts are with you during this very rough time. Hang in there Ken... and Deb.
We have a neurologist now who is managing his case but won't be back until Monday. They are setting him up with a neuro-surgeon from another hospital for once he is stabilized. We're stuck in this hospital as he is incapacitated - won't be leaving until the pain is under control and he can walk out.
It is a nightmare of epic proportions.
I have some neuro nightmare stories too, but nothing close to this.
Wishing there was a substantive way to help. This has gone on so long.
Flat-0ut lie. Patients' Bill of Rights.
"When medically appropriate and legally permissible, or when a patient has so requested, a patient may be transferred to another facility. The institution to which the patient is to be transferred must first have accepted the patient for transfer. "
http://www.patienttalk.info/AHA-Patient_Bill_of_Rights.htm
Seriously, this place is breaking so many rules and (potentially) laws it's not even funny.
You and your husband need a hero - stat. Surely there must be one somewhere on that island. I don't think they are in THAT hospital though.
Are there any lawyers out there reading this who can give Deborah some help and some advice.?
But mostly I just wish this would go away. Can't believe the months of pain Ken has had to endure, and the months of unrelenting stress on you. Prayers with you both this weekend. - K
And goddamnit!
Most hospitals have an ombudsman. Find out. Remember boards of certification, too. Doctors fear them above all others; just the IDEA that you are adding a letter in their file on this Dr can make a difference.
You are getting good advice here, from others. I will keep track of your posts, and PLEASE write more. You are not alone.
Thanks for posting this. My thoughts are with you.
"Doctors are the eighth leading cause of death in the U.S."
Where did you get that from? More like the third-leading cause, and the fourth-leading, cerebrovascular accidents, isn't even close.
But you are right to focus on Ken and his immediate issues. It just seems all so frustrating. Maybe the doctors can't figure this out, but at the very least they need to show compassion. Good for Ken for calling her out on her shit.
Good luck with this. Namaste.
All of the advice given thus far is good advice and I really have nothing to add to it. Just know, from these many comments, that you're in a caring community (no matter WHAT the eds say!) and we're here for you with whatever we have in our arsenal to help you. Please continue to write about this--it needs to be said and read. And let us know what we can do to help you in this terrible time. My thoughts and prayers are with you. Rated. D
When we are out of survival mode, I will follow all of this advice and this event will not go without consequences. This has been eye-opening in so many ways as we've had to go thru this basically alone with the ferocious help of my sister in law only.
You've gotten some excellent advice here. I have not experienced quite the same thing, but I do have some experience with doctors who are useless.
Deep breaths. DO NOT PANIC. This is important. You MUST get him out of there. Survival mode is fine, but panic is not. You HAVE to stay calm, have to keep your head here. Ken's life is dependent on it.
You can transfer to another facility any time you want whether his "doctor" approves or not. Get him out of there pronto.
Sending all the good thoughts and prayers I can. But you have to keep cool and think clearly here. You are Ken's best advocate right now, and it is vital that you know not only Ken's rights as a patient but YOUR rights as his spouse.
Please keep us posted as time permits.
I am so sorry to hear about this. At times I have had the Ear of God, so this AM I shall pray for Ken right now.
I would not want to be Dr. R. when she has to face the Almighty and explain this one. Maybe she has reached either her stress level of combustion or her edge of competency. And doctors want to be immune to law suits?
Rated
Rated
p.s. I have some experience along these lines, so P.M. me if you'd like.
I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.
When the one I loved spent almost a year of there life in the hospital for a catastrophic injury. I crossed boundaries and either a had the stubbornness of a pit bull or Sweet Charisma of a southern-bell. I worked and manipulated the healthcare system to provide the best of what MY LOVED ONE NEEDED. When I left the hospital with my loved one in my arms after a year they all stood and waived not knowing quite whether to love me or hate me. But one thing for sure they knew they had risen to the top of there game to treat me and the one how needed treating, and we were all better for it. MY HEART GOES SO FAR OUT TO YOU-
Big hugs from my family to yours!
I feel your pain and inadequate resource dilemma. I can only offer you my support, and kudos to your husband for not allowing her to have the last say.
Lastly, patients do have rights as Verbal said, and do follow up with the complaints, this cannot be allowed to happen.
((HUGS)) and healing coming your way, God willing.
There has been some wonderful advice here, starting with Verbal, and as someone who has suffered through a medical nightmare that threatened my life, I do believe that when you have gotten through this and had time to rest, you ought to find a lawyer to help you.
Is he addicted to pain medications? This is a reasonable question. If so, the pain is to be expected. The brain stops making the natural pain relieving chemical endorphins, and the brain's opiate receptors have grown and require stronger and much more opiate drugs than before, and it will continue to escalate like that until the quantity required for pain relief is a lethal dose.
Please understand that I mean no disrespect here. I'm just trying to present another way to approach the problem. If he is addicted to these drugs, the pain is very real, but it's at least in part the result of long term opiate use and the tolerance he has developed.
If I were a doctor, I'd suspect he was drug seeking and that he has a substantial habit. He wants so much of these drugs that he could die, and the pain is so bad that he can't imagine another option, with the possible exception of suicide. You don't mention addiction at all, and you didn't comment on my earlier question, but the post screams addiction to me.
There is no shame in this. He used these drugs for legitimate medical reasons, and he developed a habit. It happens all the time.
Specialists exist who make every effort to help manage the pain in addicted patients. It's a tightrope walk, but it can be done. Can you take him to a pain management clinic/doctor?
I am an addiction specialist and have dealt with my own and others' addictions for a long time. I have been there, so please don't be angry. If I'm wrong, I sincerely apologize. But recognize that addiction can be overcome; this may give you both a path out of hell.
If you both are really at the end of what you can tolerate, at least consider what I've said here.
I feel so bad for you.
thoughts and prayers, though I wish I could send more...
My personal opinion, based only on my experience having occasional nerve pain from degenerative disc disease and nasty compression in the spinal column is that opiates are ineffective for some kinds of nerve pain. I've had nerve pain get worse from things like percocet and vicodin. There are specific drugs developed for nerve pain, such as neurontin. There are also surgical solutions for this. I had an impinged (pinched) nerve in my knee that prevented me from sleeping most of a year. The surgeon fixed it. There are surgical solutions that are appropriate in some cases of trigeminal neuralgia.
I echo the advice of the poster who said find the nearest university hospital and get an expert. Not only is your neurologist incompetent, she's having a nervous breakdown. She may well be on drugs herself, because her behavior is clearly out of control. When you have time, you might want to file a complaint with the hospital and the medical board. However, this is not your first step. Your first step is to find someone who knows what they are doing.
I wish you and your husband the best.
you are both in my prayers.
Monte
This is the standard of pain care. The only standard. Anything less is malpractice, as far as I'm concerned.
You both are in my prayers for healing, relief of suffering, and hopefulness.
Please don't fall for the "it's against the law" argument. I DO have personal experience with that one and there is no law that says a hospital can hold someone against their will unless they are a danger to themselves or others. I'm wondering if the hospital is claiming your husband is suicidal, but even this doesn't fly, unless he wants to return home.
As far as your doctor is concerned, get in touch with the hospital ombudsman. This "doctor" is a lawsuit waiting to happen. She obviously thinks being a doctor is great as long as she doesn't have to deal with sick people.
Good thing she's not in obstetrics. Women in labor (especially transition) yell things to their husbands and staff that would make her hair curl. Which is the point of course and she should know it. People in pain are very frustrated and at the end of their rope, and need some hope of relief, not admonitions to empathisize with their caregivers. Unbelievable.
Seriously, they are breaking the Rehab Act or the ADA, and you've got to get in their faces. If not threaten to sue, throw fits, act like Rambo, and literally refuse to let them leave the room until they act like human beings.
Doctors are so fucking arrogant in this country that they won't even follow medical procedure anymore. Like when I just got beaten up and my head was slammed against the wall (I have TBI), and the fucking doctors refused, after NINE HOURS in the emergency room to even give me anything for my pain, anything to eat, and then finally gave me a CT scan while lying that they didn't even have an MRI (much more accurate), much less compared the two results (my brain still works unlike the dipshits at the hospital, who didn't even think of comparing the two).
So, you gotta scare them. Tell them you're a personal injury attorney, demand their cards, and tell them that if they don't get their asses in the door (and neurologists are in the room), you are going to sue their asses off, the moment you hit the door.
Plus the hospital.
Oh, and take dated and timed notes.
And send a copy to Baucus and the White House. And then sue their f*cking asses off.
My own husband was in hospital this summer for a 2d stent in heart, & his meds were incorrectly administered. He had a pause in heartbeat for 4 sec. & things were a mess. He's ok now, but our treatment wasn't all that good either. Up & down, his meds, they didn't seem to know what they were doing.
You inspired me to share another story on my blog, of my own recent clinic treatment (albeit not in the same venue of necessity as your husband's). I am quite concerned about some of medical personnel & hospital treatments at this point, & don't really know what to do about it, though there are some good ideas on this thread.
Many blessings to you and your family over this situation.
My heart goes out to your husband. My entire blog is devoted to my chronic pain journey, caused by atypical trigeminal neuralgia. Your husband has the more common form of TN, which strikes sporadically, but mine is constant, if not as acute.
There is nothing more awful than facial pain, in my opinion. I've had so many complications of a blood clotting disorder, and ATN has unquestionably been the worst...a 10-year ordeal now.
If you or your hubby ever want to email me privately to share resources and support, please feel to drop me a line.
My heart and prayers go out to you.
This is a different perspective on the distress you and your unfortunate husband are experiencing.
Trigeminal neuralgia is not life threatening.
Giving someone large amounts of narcotic or sedative drugs to treat trigeminal neuralgia may result in respiratory depression or arrest. That can be a very life threatening condition. Thus, although giving your husband large amounts of narcotics to sucessfully treat his neuralgia, most physicians would be extremely reluctant to do so if such a strategy posed a risk of having him stop breathing.
If your husband's trigeminal neuralgia pain has returned after being treated for it by various other drugs and treatment modalities, it is very likely that he requires a physician with very specific expertise in this area. I can assure you that very few hospitals have a physician with such expertise on call 24/7. Simply put, no hospital in the U.S. or Kenya can sucessfully treat all physical maladies. That is the hubris of TV medicine and not reality.
Unless your husband's leaving the hospital poses a threat to his life or to others, he can not be kept in the hospital against his will. Otherwise, you and your husband should be free to seek medical care in another hospital or clinic at any time you feel that the care he is receiving is not sufficient.
Finally, the anger that you have exhibited in your post would make any health care provider reluctant to deal with you or your family. It is easy to blame the physician, hospital, or the entire health care system for your husband's pain, but unfortunately not all of life's maladies can be cured by medicine and if someone tells you otherwise, he/she is a quack.
You wonder why so many of your former neurologist's patients are in the hospital as though that were some sort of crime or incompetence on her part. Don't sick people often end up in the hospital? You state that people in Kenya are getting better treatment from Doctors Without Borders than your husband is. That is offensive to people who know better. I have a doctor friend who's also an epidemiologist. She's worked in Third World countries with that organization and trust me, neurology is not one of the specialties they practice. They're too busy treating basic illnesses such as malaria, cholera, malnutrition, etc.
You clearly have rage for the neurologist since she can't stop or mitigate your husband's pain, and I understand that. But your contempt isn't helping your husband get the help that he needs. In fact, it seems to be actively working against you. There is no law that says doctors or nurses have to take abuse from patients, and I happen to know that most take a lot. Not all of them deserve it.
Making enemies of the hospital staff
I'm sorry to hear about your experience. I've seen similar things, but perhaps not anything quite this outrageous.
Hope everything works out.
But why give this bitch the satisfaction of being anonymous? PUT HER NAME UP HERE with the name of hospital. Get some fucking heads to roll. I will help you with this if you like. I'll post it on my blog, too. Her name. The hospital. Everything. Maybe we can get everyone to do it.
Second step, find a new hospital with a better person in the field. Clearly, this bitch, this lame ass excuse for a human being, much less a doctor is the wrong person to be treating anyone. You need a better hospital and a social worker to help you with any other situation that might come up. A good social worker, which might be hard to find, but if you can, is worth it.
I mean it. Post the name up here. I'll put her name and the hospital on my blog, too. And so on and so on. We'll kick this bitch into next week and then kick her ass again on Thursday.
The truth is that the human brain is so much more mysterious than anyone wants to admit. You're obviously in a hospital that doesn't have a neurology department that can deal with difficult cases. Your neurologist sounds like an idiot, but thank god she's willing to admit it. There are too many patients languishing in hospitals that won't tell them that they don't have the expertise to help. If you haven't made progress today find out if there is a hospital with a better neurology ward. Take your husband and go to the E.R. there. They may not be able to transfer him, but I doubt there is a law preventing your from going there yourself.
Good luck. I'm praying for you.
I'm so very sorry for your husband's pain, especially in the face of relentless apathy; I'm so very sorry for your extremely painful inability to solve this. I'm so very sorry.
Two points: There may be a hospital ombudsman who can help you very quickly, without any "official" complaint. The hospital social-services department also may be able to help. They're usually pretty good at making such problems go away, at least for the short term, so that you can concentrate on your husband's medical issues.
Second, by laws against transfers does she by any chance mean laws against patient-dumping? That's an entirely different thing. She can't refuse to treat him just because she's tired of it, nor can the hospital put him in a taxi to be delivered to a hotel or a box under a bridge, but he, or you on his behalf, can certainly request and receive a transfer to another hospital and physician qualified to provide care for his condition.
I'll keep you all in my prayers.
Quick, before that 'money-saving' legislation goes thru.
While being obnoxious, as Juliet advises, may not seem the best approach, I have found thru experience that out-oboxing the obnoxious is the way to get results (especially after being reasonable hasn't worked).
And complain up and down the line, to the local media, anywhere you can find. First the professional association, I think. I once went to the Law Association about a lawyer - I only knew there was such a thing and that you could complain because I had once worked in a law office - and I was patted on the head and made to feel like a nuisance. However, the next day I got a certified cheque from the lawyer for the money in question, and later on this lawyer, when I ran into him about something else, told me he'd been refused the junior judgeship he'd wanted - ten years after the fact - because my complaint was on file.
Anyway, please keep us posted - this is a terrible situation quite aside from the doctor/staff shit, and we all have you in our thoughts.
It cannot get any stranger than this.
If this is this loser's attitude, she should have gotten herself a 9-5 job. There is NO excuse for this. I too suffer from TGN, but NOTHING like what you are describing. I hope your husband finds some relief soon, and finds a COMPETENT MD at the same time.