Please share your incompetent doctor experiences

[House Cat]

@House Cat, This is a little off topic, but it seems like your son was given Remicade before it was approved for use in children (around 2005, 2006). Were you part of a trial or was this off label?

On topic and not serious: I was rushing to my doctor's appointment when I slipped on ice and fell hard about half a block from his office. I check in and was almost immediately called into an exam room. The doctor comes in, I tell him about my fall. He checks my heart and says, "You're tachycardic; we should run tests". Of course my heart is beating fast, I have adrenaline coursing through me from the fall!

I am reeling a bit right now...

This was in 2002. We were not a part of a clinical trial. We were not told anything about off label uses. I'm not happy.

But believe me, everyone did their best to deny that the Remicade was responsible. It took almost 12 years and the new head of neurology to tell us that this medication was the culprit. I spent all of that time, thinking my son possibly had a ticking time bomb in his head and that at any moment, he would have another seizure that could kill him.


Dear @Rockdiamond , I am so sorry for my choice of words. I was only halfway through my first cup of coffee. I keep telling myself I shouldn't post in that condition. Please forgive me.

 

[Tekate]

I think many many incompents physicians are never disciplined Missy.. My ex husband's uncle was a urologist and continued to operate when he had early dementia, no lie, they finally got him out when his sister went out to Cali and talked him into retiring..

My husband had a cancerous tumor on his abdomen, they 'forgot' to notify him of the biopsy results for 6 MONTHS it just sat around till somebody read it and then we had to have two emergency operations on him.. Personally physicians don't like what they do..

Thank you all for sharing. Awful experiences and I am so happy everyone survived them!

I will be back tomorrow to share my stories and to reply individually to each person but just to reply to cmd2014, this thread was to share our incompetent doctor stories of which sadly there are too many.

I think airing things out to the light of day is the only way doctors can learn from their (unintentional) mistakes and shouldn't that be the goal of all healthcare providers...to do no harm first and to do the best job they can for their patients?

Of course there are good doctors and surgeons out there. I had an amazing surgeon. And of course good doctors make mistakes. We are human.

And of course shi* happens that cannot be controlled.

The intent of this thread when I started it was to share things that were indeed under the doctor's control but he/she dropped the ball or just didn't care enough or was just plain incompetent.

Sorry if it touched a nerve for you. That was not my intent.

May all the incompetent crappy doctors be reported and have their medical licenses taken away before they continue to do harm and hurt people. May all the doctors who want to become more skilled more caring and just better at what they do flourish and continue helping all the people they help every day.

But for the doctors who simply don't give a damn I hope they all burn in he**. It is a profession of critical importance and what they do matters.

 

[missy]

Thanks cmd2014. I appreciate that because I don't think silencing those who have had unfortunate experiences with doctors is ever a positive. Secrets can be dangerous. That's why malpractice cases are discussed at hospitals and among doctors all the time. To make things better for everyone and prevent mistakes as best as possible. Especially careless mistakes which are completely preventable.

I also feel I hit a nerve for you and again I sincerely didn't meant to offend anyone. I have great respect for good doctors and great disdain for doctors who just don't give a damn and don't want to learn from their mistakes.

I didn't want to be silenced re my thoughts as I am sure you never intended to do. I greatly appreciate having a forum filled with people who are caring and understanding and also love bling. It's a nice place to be.

 

[missy]

I am reeling a bit right now...

This was in 2002. We were not a part of a clinical trial. We were not told anything about off label uses. I'm not happy.

But believe me, everyone did their best to deny that the Remicade was responsible. It took almost 12 years and the new head of neurology to tell us that this medication was the culprit. I spent all of that time, thinking my son possibly had a ticking time bomb in his head and that at any moment, he would have another seizure that could kill him.


Dear @Rockdiamond , I am so sorry for my choice of words. I was only halfway through my first cup of coffee. I keep telling myself I shouldn't post in that condition. Please forgive me.

LOL I too almost had a heart attack (not literally but OMG) when I read your sentence but then I quickly skipped ahead because I thought I knew what you meant and thank goodness he is A-OK!!!!!!! I'm so sorry you and your family and son went through that and thank you for sharing your story House Cat.

 

[ksinger]

Missy, you need to quit apologizing or explaining when someone gets their knickers in a twist about hearing that some people have had bad experiences, sometimes very bad, with doctors. If a person can't refrain from taking posts like those in this thread, personally, then that really is their own problem.

I could argue that of the people in this thread, I have had the most concentrated and sustained contact of anyone here, as a patient, with the medical profession. I'm right up there certainly. I will not bore anyone here with a list of my conditions, or the sad tales about them. Many here know I have MS, and trust me, it's quite enough in and of itself to "enhance" one's contact with the medical mill. I will say I'm now officially on a permanent medical disability. Of the various meds I am on, I take one medication that retails for about $7000 a month (and that is an estimate - it could be higher now). Aside from the other one-off surgeries I've had, and the endless blood work I have to do for every single specialist I see, I have had 10 MRIs in the last 3.5 years. For 4 years running, I have hit my out of pocket for the year, before the mid-year mark. A two week stretch without a doctor's appointment, is a rarity in my world.

From docs, to nurses, to techs, to PTs, I have had good and bad. But I have to say, the "not doctors" have an overall better track record IMO, for listening and understanding. They also have a larger store of experience with the reality of what patients actually experience, than the doctors do.

One of my personal experiences then. And variations of this particular situation - needle sticks - with the person doing the sticking trying to blame the patient for their own lack of skill, I have in too much abundance. This is but one, and not even the worst.

MRI - I go in for what at the time, was my bi-annual brain MRI (now I've pushed it to annual and maybe longer just because I'm sick to death of them) at the place I've always had them - a hospital setting, not Bubba Joe's MRIs Fast! franchise. My favorite tech is not there that day. (Please note, I'm on a first name basis with the tech. That should tell you something. My favorite tech is a super sweetie.).

The new guy is getting me set up. I ask for the headphones I've always had during these things - focusing on in-depth news stories on NPR helps me ignore the noise of the machine. New tech informs me that "We don't give headphones for MRIs of your head." Me, "Uh, yes you most certainly do, because I've had them every other time I've been here." Him, clearly disgruntled, grudgingly sets me up with the headphones. (Really dude? How hard was that?)

Then, later, when he pulls me out to inject the contrast (seriously, I've had so much gadolinium in the last few years, I might set off the sensors at the airport. And yes, I'm kidding about the sensors) he can't find a vein. Ah, medical people with crap phlebotomist skills! The bane of my existence. Anyhow, after multiple attempt with him digging for the vein, I'm losing what's left of my good humor. He asks about my other arm. Nope. Only my left, sorry.

Then he starts looking at my hand. Lessee, he can't find a vein in the crook of my elbow, so him digging around on a nerve-rich hand is going to go so much better, I'm certain. I'm thinking "Don't you DARE." But I grit my teeth and let him try. Because I refused to let him try the back of my hand first, he digs around on the inside of my wrist for a few, at which point, my good humor has permanently fled, and my bluntness has arrived with some force.

"You need to go find someone who knows how to do this." Him, stung, "I KNOW how to do this, I was a combat medic for 6 years!" I didn't reply but should have, "You could have fooled me. And while your service was nice, this ain't Iraq and I'm not bleeding out by the side of the road. You don't get to jam a needle in anywhere you damn well please." Ah the things I don't say! Definitely for the best, but the temptation is always great. Anyway, he gets a clue and goes to get someone else. My husband was there, and as he walked by my husband - who could view and hear much of what went on, he groused to my husband, "She's got all these good veins (right arm, back of left wrist) but she won't let me use them!" Yeah. Bitching to the spouse about how his wife is being unreasonable about refusing to be a pincushion any longer. Keeping it professional, yes sir. So he brings in a nurse, who pops the needle in, in the usual spot, first try. Nothing wrong with my veins after all. Oddly, there never really is, there is just more variability in the skill of who is doing the sticks. For this reason, when I do get someone who is good at their job, I make a point to formally thank them for their skill. But I have little patience anymore for the type of incompetence that tech displayed, and after you've hurt me a few times too many, I'm not going to be sweet about it, nope.

As I said, I have a ton of these experiences, and while they are not incompetence leading to permanent injury, they add up to me being in a somewhat permanent flinch mode. You never know what you're going to get, and it's stressful. I estimate it at 50/50 on any given day, that I will encounter a Nurse Ratchet over a Dr. Welby. (Some will get that and some won't - my age is showing, ha!)

 

[missy]

Ksinger I agree completely and it is a scary wheel to be on when one is sick and vulnerable and not sure who to trust and which way to go and when one's quality of life hangs in the balance. Literally.

And the doctors I appreciate know it. OMG my surgeon and his physician assistant (both top notch) know how appreciative my dh and I were and are of them. And they and their whole staff have all the home baked goods from us to show it.

 

[ksinger]

Missy, I've had some great experiences with surgeons too. A couple of less than wonderful ones on a personal level, but all good at the surgery part. I think they are often better because they DO something: for a surgery, there is generally a beginning, middle, and end of the problem. Generally satisfying for both patient and doctor. And if you don't get on with them, well, only rarely are you going to have to ever deal with them after the surgery. When you have a still mostly mysterious chronic condition like MS, that hits you with such weird symptoms, many doctors just think you're nuts, or putting on. The number of docs who know jack about MS, is HUGE. Heck, the number of neurologists who know zip, is huge too.

I often feel like the elephant and the blind men. I'm the elephant, I'm just an isolated symptom that walks in the door, and even knowing I have MS, most docs can't refrain from being reductionist about what I'm experiencing. My latest "weird deal" is occipital neuralgia. Pretty darn rare, I get it. But not so rare with people with MS, alas. I know: I'm not a doctor, how dare I diagnose myself. Well, I'm also all too familiar with acute nerve pain, and to me, it was painfully (har) obvious that nerves were involved. The symptoms I have are a pretty classic case of ON. It's far more painful than this link describes. It may be more treatable than trigeminal neuralgia, the "suicide pain", but not much less painful when it's flaring. I understand on a very visceral level, why a person would want to exit this life because of pain like that, believe me. If you had told me at the height of this, that there was no recourse for me but to have someone shoot me, I'd have seriously considered it. (Oh, and this very acute pain was woefully undertreated too, but that's a tale for another time.)
http://www.msunites.com/blog/2016/05/07/multiple-sclerosis-ms-symptoms-occipital-neuralgia/


But in spite of my descriptions of what was going on, my GP misdiagnosed or under-diagnosed me with "torticollis" (doctorspeak for "stiff neck") which may have been true at the time, but was likely a symptom of the real problem, which was inflamed/damaged nerves. It's gone from being super acute, to more chronic now, and I'm still waiting on some better relief. So now I'm stepping into the pain management specialty. Yay. I'm about ready to fire my long-time GP too. Another long story.

It just never lets up for me. So yeah, I have a genuine crap ton of being on the receiving end of a lot of ignorance and bias.

 

[YadaYadaYada]

Not a doctor story but a hospital story, Yale to be exact.

34 weeks pregnant, I lose the central vision in my left eye, go to my local hospital but I need specialized care so they transfer me to Yale. Get to triage and I see every specialist under the sun and they determine it was a blood clot that traveled and lodged into an artery in my eye. Branch retinal artery occulation, extremely rare in someone of my age (35) they had never seen this before. Literally had every scan under the sun since they considered this a stroke, one of the tests (don't know the technical term) involved a dye test where they were going to dye my arteries to check for more clots.

My SIL was 21 at the time and stayed overnight with me since they were keeping me a whole extra day for this dye test. When the nurse came in that morning she referred to it as a "dye study" and SIL immediately told me it sounded experimental and she didn't think I should do it. I dismissed that since we were at Yale, one of the top hospitals. Fast forward to the end of the second day the nurse comes in and tells me I'm being released. So I ask her about the dye test and she responds with:

"Oh, we can't do that test when you're pregnant".

Let's just say that I am more skeptical, more outspoken and much less trusting now as a result.

 

[t-c]

I am reeling a bit right now...

This was in 2002. We were not a part of a clinical trial. We were not told anything about off label uses. I'm not happy.

But believe me, everyone did their best to deny that the Remicade was responsible. It took almost 12 years and the new head of neurology to tell us that this medication was the culprit. I spent all of that time, thinking my son possibly had a ticking time bomb in his head and that at any moment, he would have another seizure that could kill him.

I didn't mean to alarm you @House Cat. While Remicade was not approved for pediatric Crohn's until 2006, there was at least one study from 2000 that showed safety and efficacy in children around 13 years of age. Off-label use is not rare, (see Avastin, an anti-VEGF cancer drug, being used for macular degeneration) and sometimes trigger the pharmas to seek approval for other indications, but patients should be informed.

Unfortunately, your son had a serious adverse reaction to Remicade. I'm glad you were able to conclusively find out and you can avoid similar therapies.

 

[LLJsmom]

Ok so I haven't read all the stories but I'm sure they are all harrowing. I have a doozy as well.
My Dad has had intestinal issues for many years, and had parts of his small bowel removed back in 1993-94, (due to cancer) two very complicated surgeries that required him to stay in the hospital for almost two months because as many of you know, it takes forever for the gut to heal. And then he was on fluid nutrition for about six months after he went home. He eventually got better but he has a very sensitive digestive tract. He needs a bag and his life has been changed forever. Fast forward 22 years. He started having fevers, on and off, every couple of months. Took doctors a while to figure out the cause. Tests showed that he had an infection in the intestines and that spots had burst and toxic stuff was leaking into his other organs causing an infection and thus the fever. These were low grade and came and went very 3-4 months for the span of 12-18 months. Was referred to one GI specialist, (I will call him Dr. X) new to him, and one look at the test results (forgot name of test) he calls my Dad And tells him to meet him in the emergency room the following day. Emergency surgery. Emergency room can't turn him away. Needless to say, my Dad was taken aback. He said he couldn't go on a Friday cause he had commitments but would go on Monday morning. I found out about it on the weekend and freaked out and demanded that my Dad not get any surgery until he got a second opinion. I immediately contacted @azstonie who I will say to this day saved he life of my Dad and family. She gave me such great information and gave me the courage to keep getting as many opinions as possible and reaffirmed our decision to wait and become more informed about my Dad's situation and the potential surgery. We called around to other doctors, consulted other member of our extensive family and discovered a very disturbing story. My uncle, my Dad's younger brother also has GI issues and years ago had somewhat of a similar problem. He also encountered Dr. X, who also told my Uncle the same thing after one consultation. Go to the emergency room immediately. My Uncle did not follow the advice and instead contacted another GI specialist who told him to wait on the surgery and see. My uncle did eventually have a different less invasive procedure done. But it was seven years later. So we made urgent appointments with two other different doctors for second opinions. One especially competent and conscientious Doctor examined multiple test results taken over a period of time and determined that the fissure had circled back into my Dad's intestine which actually was a good thing and did not think my dad needed the surgery and thought it was best to treat the fever as it arose. Given my Dad's age and history of complications with GI surgery, the surgery Dr. X could have seriously compromised his quality of life, if he could even survive the healing process. So my Dad has been good for over a year and is just taking better care and taking precautions. No surgery needed. We had to advocate for him, and keep seeking out answers until something made sense. As @azstonie said, this surgeon sees himself as a hammer and sees every patient as a nail. I count my blessings that we were able to escape the clutches of this surgeon. And, after my dad told Dr. X he wanted to wait and get a second opinion, not once did he call back to check on my Dad's status. Sure sounds like emergency surgery was needed, right?

 

[LLJsmom]

Missy thank you for starting this thread. It is a very good reminder that doctors are human and humans make mistakes. I have more stories but that is one of the more serious ones. I'm not bothering with others that would not have had life/death consequences. Well, there was one that suggested I shorten my tongue to remove some spots that had color on them. I will say I passed. I just let him burn some spots off. The remaining spots did not turn into anything and is just basically discoloration. The burning hurt, and was unnecessary. I'll let that go. I'm just glad I didn't let him operate and shorten my tongue by 3/4 of an inch. Yah....

So good for you for speaking up. And no, in my book you have no "issues", but are just sharing and asking if others would like to. Thank you to everyone who has. I am grateful.

 

[Arkteia]

2 blood clots in my lung and the doc at the walk in clinic sends me home with panic attack pills.
Next day cant move leg, go in blood clot big one, check lungs 2 clots and visible damage where they had been one and lodged higher. The other doctor was doing rounds at the same time as my doc and I heard him yelling at him in the hall about it.

I have had rotten luck with pulmonologists including my current one. Had a good one that helped me a lot by putting me on a bipap at night but he left. I don't check all the check boxes for any one thing and they refuse to listen other than the one.

Something similar. I had pain under my right shoulderblade. X-ray showed nothing but the pain persisted. I told my PCP, "it is not that i am asking for painkillers, is it? I merely need to be sure that everything is OK", and they sent me for a chest CT.
A very well-known and experienced doctor looked at the scan and said it was all fine at the preliminary, and the pain was from hiatal hernia, but should anything be not OK, he'd call...
When no call from either him or my PCP came, I called the PCP myself. She was away but offered to check with the radiologist. I said, no, he'd call if something were wrong, right?
Wrong. When she got back, her nurse called me to check if I really had CT done at that place because the PCP called them and they could not find my scan. Long story short, the doctor had misplaced it (he blamed the secretary) and never did the final reading. I had pulmonary embolism. (It did not surprise me as I had puffy legs after each flight, and I was flying to Russia almost monthly, with my dad's illness. He was in much better shape than now, physically, but horribly depressed). Of course I was prohibited to fly, put on Coumadin, etc, etc.
A whole week elapsed between my CT and the diagnosis. I was very lucky.

 

[ksinger]

Something similar. I had pain under my right shoulderblade. X-ray showed nothing but the pain persisted. I told my PCP, "it is not that i am asking for painkillers, is it? I merely need to be sure that everything is OK", and they sent me for a chest CT.
A very well-known and experienced doctor looked at the scan and said it was all fine at the preliminary, and the pain was from hiatal hernia, but should anything be not OK, he'd call...
When no call from either him or my PCP came, I called the PCP myself. She was away but offered to check with the radiologist. I said, no, he'd call if something were wrong, right?
Wrong. When she got back, her nurse called me to check if I really had CT done at that place because the PCP called them and they could not find my scan. Long story short, the doctor had misplaced it (he blamed the secretary) and never did the final reading. I had pulmonary embolism. (It did not surprise me as I had puffy legs after each flight, and I was flying to Russia almost monthly, with my dad's illness. He was in much better shape than now, physically, but horribly depressed). Of course I was prohibited to fly, put on Coumadin, etc, etc.
A whole week elapsed between my CT and the diagnosis. I was very lucky.

Holy crap! You seriously lucked out on that! Glad you're still amongst the living!

 

[Niel]

I have a very unattractive old man mole in a very sensitive area. At 16 for about 2 years the same physician's assistant told me it was genital warts. Being young I didn't think twice about it, though I didn't know how I would have contracted it. First time I saw a real doctor for my yearly pap smear I found out it was a harmless mole.

My labor with my daughter was 30 hours. At a certain point her heart rate began to drop. I had informed them that I was allergic to penicillin earlier in the labor. They asked me "what happens when you get it". I said I don't remember as I was 2 years old when the allergy was discoved. Without my knowledge or consent they administered penicillin anyway. I developed an intense full body boil-y rash after leaving the doctors office. I can remember my body radiated so much body heat my daughter wouldn't let me hold her to breastfeed.


Hopefully this helps. My mole story is embarrassing to me and it makes me mad that it is. I did nothing wrong.

 

[GliderPoss]

This is an interesting thread. I've had some terrific medical experiences - Doctors who saved my life when I got meningitis & who were amazing when I had severe ovarian cysts (OMG the pain!) and required emergency surgery. But also cr*ppy ones who only 2 weeks ago misdiagnosed my "mallet fractured" finger - sent me home with strapping tape only to call me back frantically a week later (checked the X-rays properly!) to have surgery (wires etc) to repair the bone & ligament. I would have been deformed for life which is rather important when I need to type for a living!!!! Overall I trust them but ask many questions to ensure I feel comfortable with the diagnosis/treatment.

 

[missy]

Wow, @missy I saw your toe! Eek, hope it heals soon, it looks painful.

I'll share a story in hopes someone will take something from it. I had a complicted neck surgery (titanium plates, a harms cage, screws, etc). Loved my surgeon, I thought he was awesome. He was so proud to be able to help me at such a young age for reconstruction. He even called the other the Drs/PA's in to show them what a mess I was and how he fixed me.
BUT, when I sent my mom to him for back pain, the experience was very different. He sent her for an MRI. When she returned to his office for results, he didn't have them yet. Grr! She was in so much pain, so I called the next day and asked for the results to be sent directly to us as well (I'm pretty adept at understanding spinal imaging).
Well, when I received the results by mail, I saw that they had detected cancer on her adrenal gland, fairly large at ~5cm. At that point, upon learning about this cancer, we had far bigger worries than her back aches and thus she started her short-lived fight for life. Amazingly, the surgeon never followed up with her results. Not one call ever to let us know they found cancer in her MRI. I guess no one in that office reviews results unless you come back in? Shouldn't the ordering Dr/staff review the results of tests they ordered?
If I hadn't gotten those results myself, we would have never known she even had cancer and it would've robbed us an earlier chance to fight it.
I have gone back to him as I have ongoing spinal problems and he is the 'best' but I was so disappointed to not receive word of the terrible results.
Lesson...Always get copies of your results!! Google is amazing at helping decipher them and I think some Drs are remiss.

Edited for clarification. This is a sensitive subject for me.

Sandeek I am so sorry about your mother and for the surgeon's office not to contact your mom immediately with the results was inexcusable. Yes someone in that office (preferably the physician) should be reviewing the tests they order. Not to do so is negligence, carelessness or just plain not giving a damn.

Many years ago, I had a gynae procedure, the surgeon cut a blood vessel, causing extreme blood loss. He then went on holiday. I knew something was wrong when I came round from the anaesthetic feeling weak and in extreme pain, and a nurse was sitting by my bed, checking my vitals every 20 minutes.

His miracle cure procedure had no effect, in fact left me in more pain than I'd been in before. His suggestion - a hysterectomy. No way, I was 30 years old and not about to give up my reproductive system.

Makes you wonder how can some people be so callous. I am so sorry you went through this Austina.

16 years ago I was diagnosed with Triple Negative Breast Cancer. Prior to diagnosis, I found a lump on my breast in the shower. Immediately got myself in to see the OB - he told me I had a cyst on my breast. Lump continued to get larger - a very hard mass. Went back to see him and told him that it hurt when I did pec presses or opened my chest up in pilates. He told me that I probably pulled a muscle because "breast cancer doesn't hurt"; went back a third time and he dismissed me as being over anxious. Thank god my intuition got the best of me. I contacted my General Family Doctor who immediately got me in for a mammogram and I was diagnosed that day with a very aggressive tumor in my breast. Had I listened to the first doctor...... I wouldn't be posting right now! Moral to the story - be your own advocate with your health, take it into your own hands and be persistent.

Wow thank goodness Queenie that you had the clarity of thought and strength of conviction to listen to your body and your intuition and know something was not right. That is for sure negligent on the part of the doctor. Horrible.

I know there are good doctors and mediocre ones and awful ones. If something happens by an honest mistake it's still heartbreaking and sad, but humans make mistakes. Plumbers, electricians and doctors and all professions alike.

All of the most infuriating stories, though , have one point in common: They were totally avoidable. Mostly due to some sort of hubris going on.
Like when I told the old ENT doctor who we had to go to for dh's qemergency: Couldn't he be suffering a sudden hearing loss? With severe damage to his inner ear? And he just said: "Are you a doctor?No? So I'll just keep diagnosing stuff here and just hold his hand..it's something completely different. You won't understand the details."
RIGHT

A day later in the special ENT unit in our top notch hospital we were asked why we didn't come earlier, since for sudden hearing loss, timely therapy is crucial... hubby's ear is permanently damaged now.

Or for one of my deliveries, when the ob/gyn forgot I didn't have an epidural. Just wanted me to keep still and I told her: the baby is coming NOW.
She goes: No
I go : yes
She:no
I: I know. excatly .where it.is.
(Head comes out)
She: stop , I need to put on my gloves!
HONESTLY ?STOP? As if one could.

Absurd situation and abbreviated to get the fun side out, but there had been complications before and they were FIVE and just wouldn't listen to me. It was so frustrating. Because I knew what was happening and they just didn't want to listen to me.
So I think this thread should make any doctors aware that they need to listen to their patients. And if you don't know what to do? Get help from a specialist colleague. It's the right thing to do.

We as patients need to trust, be we also MUST be responsible for our own health. If you feel the doctor andis wrong/not up to it:
Get a second opinion.
If she/he wants to talk you into anything or you think they just "try " something on you for training: WALK OUT!
I have a 4 cm scar from a 0,5 cm mole a dermatologist took out when I was 19. She told me she wanted to practice her sewing when she had finished. At that age I didn't have enough confidence to walk out,when everything seemed fishy... lesson learned...

Kipari YES absolutely. Good Healthcare professionals have one thing in common. They LISTEN to their patients. Sorry you went through that and glad it turned out A-OK.


t-c LOL that is not seeing the forest for the trees for sure. Ludicrous but funny and thanks for the laugh.

For 5 months I dealt with a severe breast malformation that had onset after I began an intense round of hot yoga. I went to a new Gyno because our health insurance had changed and my old doctor was merging with a new practice. The new Gyno was a male which made me feel kinda insecure, but I was assured by his great patient rating on United Healthcare's website. Upon meeting him I gave an impeccable history of my breast changes and also revealed some of the proposed diagnosis that I had considered based on the fact that I hold degrees in Biology and Microbiology. The doctor literally laughed in my face. I was greatly offended for obvious reasons; I may not have desired to go to med school but I am absolutely no slouch in my comprehension of human body physiology and treatment. The doctor proceeds to diagnose my breast issue and prescribed me a treatment plan that includes medication that will eradicate my natural bacteria flora and cause an overgrowth (ie: yeast infection). I expressed this concern to him... Again he laughs and tells me I am misinformed. I take the medication as prescribed and sure enough 8 days later (still taking the meds) I develop an adverse response to the medication AND my breast issue had become painfully worse. Now I need additional medication to help the new issue. Two whole months later and two doctors later I finally encounter a respectful, competent doctor who absolutely values the knowledgeable patient that I am... She takes my concerns super serious and also feels the same way as I do about the possible true diagnosis of my issue. She sends me to UNC's Cancer Hospital for a mammogram, ultrasound, as well as diagnostic from a breast specialist. Weeks of tests and treatment yield that I have developed chronic spongiotic dermatitis from a prolonged allergic reaction to latex and spandex. Apparently, during hot yoga the extreme temperatures and profuse sweating caused the fabric of my sports bra to break down on a microscopic level... With constant latex exposure my nipples were just suffering so badly! Eventually the lack of accurate diagnosis or proper treatment led to developing a chronic illness from something that could have been a controlled allergic reaction if treated early enough. In the end after almost $8000 in medical, several months of antibiotics and creams my boobs are 100% back to normal in appearance. I permanently can not wear bras that are not 100% cotton or I feel the burning sensation immediately and my nipples skin gets dark and starts to harden & flake. I also have to use a prescription cream on my nipples everyday FOREVER in order to keep the dermatitis at bay. Totally a painful, unnecessary, sucky experience. DOCTORS ARE NOT GOD!

Ugh what a horrible experience! I am so sorry you went through this. Doctors are certainly human and make mistakes but mistakes like this are inexcusable. And can be tragic. When I think of the harm some do it makes me so upset. In a profession where do NO HARM is first and foremost.

Ugh, I could add several things in here, but it is a very sensitive topic for me too... when I start thinking about the (permanent) damage my body has experienced from incompetent doctors, it makes me very angry plus want to cry. Also, my stories are long, lol.

I will just say that it's very important to find a doctor who LISTENS to you, and that you can trust. They are out there, but sometimes you have to go through a few bad ones (or even just ok) to get to the "good" ones. And one other thing - you must be your own advocate, don't be afraid to speak up and speak up *loudly* if you think something is wrong. Honestly, in worst case scenarios, I find the field of "medicine" to be like one big machine that will just chew you up and spit you out, and you have to fight to make sure that doesn't happen!

Sorry if that sounds extreme; it's just my personal experience. ETA - I've had some very good doctors too, but the bad experiences I've had have really colored my view.

Agree completely! We must be our own advocate and not afraid to question. And I am so sorry you have experienced such awful things at the hands of doctors.

wow, my story doesn't seem so bad. Decades ago I had a seizure, and then a 2nd seizure a couple months later. My primary care doctor (whom I otherwise love, and continue to see) prescribed an antiseizure medication for me. Over the course of the weekend I started feeling worse and worse. The beginning of the next week I went to see the seizure specialist and reported all the various concerning symptoms I was having. To make the story short, I ended up in the hospital for 3 days, connected to machines to monitor my heart among other things, because the medication build up to toxic levels in my body (my system was not breaking down properly). Apparently this happens frequently enough it is standard of care to test the medication blood levels 48 hours afterwards it is prescribed to catch this, but my PCP wasn't aware of this. Whoops!

If one is prescribing a medication that healthcare professional should be aware of the risks and necessary follow up needed. So sorry you dealt with this and thank goodness you are OK now.

My sister's mother-in-law had a pacemaker and was having some trouble, she went into the hospital and the pacemaker had moved and dislodged itself, while there she started getting worse so they go in and remove the pacemaker and see serious infection, the doctor removes the pacemaker and find a surgical sponge left behind and it caused infection. He had to go in and clean out all the infection and put in a new pacemaker. Can you say LAWSUIT!!! for original doctor.

Ugh. How can the surgeon not get he/she is dealing with a LIFE and must be/cannot be too CAREFUL. Ugh ugh ugh.

When I was 3 years old, I had spinal meningitis. My parents took me to several emergency rooms in one night and both ER docs thought my parents were just nervous new parents and there was a flu epidemic in San Francisco so thought my parents had a baby with the flu and freaked out.

The third ER doc made the correct diagnosis. Lucky my parents didn't take me home to die after the second hospital ER doc ridiculed them for bringing me in.

Thank goodness your parents were vigilant and not intimidated by the ER doctors. Or it could have had tragic consequences.

I have a dental story to tell.
Five years ago I went to the dentist for a toothache. The dentist said a root canal was needed.
Afterwards, at home, the numbness in my jaw had receded, but the front of my chin and bottom lip was still numb. Several phone calls to the dentist later, I was assured that the numbness would eventually go away. Well it didn't.
After much online research, I had concluded that the numbing agent, or packing material applied inside the root, had damaged the nerve, and the nerve would probably not recover. This situation is common worldwide, and is called paresthesia. The dentists I spoke to acted like it is so "rare" and "unusual", and apparently didn't want to admit how common it actually is.
A few months later, Dentist sends me to an associate/specialist who couldn't explain my problem.
I spoke to some lawyers who specialize in medical issues, and I was told that since I had some recovery, and I am not slobbering or having trouble eating, I didn't have a case.
So five years later, my lip and chin are still numb. Luckily, it has not interfered with my speech, has not caused any eating problems, and nobody knows my lip is numb but me.

I am so sorry Stracci. I remember during one of my root canals I had numbness that lasted 2 months and thought it would last forever but the feeling thankfully came back. It makes me think twice about getting the needle when I need another root canal but I am not sure of the other options. I am so sorry your paresthesia is permanent.


Tekate, LOL.

2 blood clots in my lung and the doc at the walk in clinic sends me home with panic attack pills.
Next day cant move leg, go in blood clot big one, check lungs 2 clots and visible damage where they had been one and lodged higher. The other doctor was doing rounds at the same time as my doc and I heard him yelling at him in the hall about it.

I have had rotten luck with pulmonologists including my current one. Had a good one that helped me a lot by putting me on a bipap at night but he left. I don't check all the check boxes for any one thing and they refuse to listen other than the one.

I am so sorry Karl_K. Good doctors listen and don't rush to judgment and are careful.

When my kids were little I had one pediatrician who couldn't diagnose chicken pox and another that when brought my son in with a infection between his thumb and forefinger, that was getting bigger AS I WATCHED, sent us home with an antibiotic prescription. I went to the fire station and got my husband and we rushed him to the hospital. He spent two weeks in intensive care for flesh eating bacteria. Thankfully, he didn't lose his hand but he has a nasty large scar. I don't think I have really trusted drs. since. I am pretty skeptical and do a lot of research on my own before I accept what they say. At least now information is easier to find thanks to the internet. Just a couple months ago, I had a UTI and the dr. gave me Cipro. I came home and researched it after taking it for a couple days. Cipro is a great drug if you have been exposed to anthrax but has some pretty severe and permanent side effects. Another lessoned learned, and I thought I was pretty on top of it. But I will not ever take a med until I have researched it. Doctors downplay the risk of side effects so you really have to decide for yourself.

Terrifying story. Unfortunately as I start to need doctors more I see more go wrong and I trust much less. I know there are more good doctors than bad but it's a scary world out there when you are sick and need to rely on someone else's expertise. Thank goodness you knew it wasn't right.

Wow, there are some absolutely horrible experiences here. The worst I had was a doctor in rural Australia who used high proof alcohol to sterilize a wound I had suffered from a boar, did the trick though. Apparently when you are 1000 miles from medical supply replenishment you learn what works that isn't in medical books.

My father had a broken collar bone and the first 2 doctors didn't think that it needed a plate and screws. He got it fixed eventually.

Jordy LOL well they did what they had to do and if high proof alcohol does the trick and sterilizes the wound you have to say thank goodness they had that on them (and didn't drink it all). Sorry about your dad and glad he finally got the proper treatment.

 

[missy]

Missy, you need to quit apologizing or explaining when someone gets their knickers in a twist about hearing that some people have had bad experiences, sometimes very bad, with doctors. If a person can't refrain from taking posts like those in this thread, personally, then that really is their own problem.

I could argue that of the people in this thread, I have had the most concentrated and sustained contact of anyone here, as a patient, with the medical profession. I'm right up there certainly. I will not bore anyone here with a list of my conditions, or the sad tales about them. Many here know I have MS, and trust me, it's quite enough in and of itself to "enhance" one's contact with the medical mill. I will say I'm now officially on a permanent medical disability. Of the various meds I am on, I take one medication that retails for about $7000 a month (and that is an estimate - it could be higher now). Aside from the other one-off surgeries I've had, and the endless blood work I have to do for every single specialist I see, I have had 10 MRIs in the last 3.5 years. For 4 years running, I have hit my out of pocket for the year, before the mid-year mark. A two week stretch without a doctor's appointment, is a rarity in my world.

From docs, to nurses, to techs, to PTs, I have had good and bad. But I have to say, the "not doctors" have an overall better track record IMO, for listening and understanding. They also have a larger store of experience with the reality of what patients actually experience, than the doctors do.

One of my personal experiences then. And variations of this particular situation - needle sticks - with the person doing the sticking trying to blame the patient for their own lack of skill, I have in too much abundance. This is but one, and not even the worst.

MRI - I go in for what at the time, was my bi-annual brain MRI (now I've pushed it to annual and maybe longer just because I'm sick to death of them) at the place I've always had them - a hospital setting, not Bubba Joe's MRIs Fast! franchise. My favorite tech is not there that day. (Please note, I'm on a first name basis with the tech. That should tell you something. My favorite tech is a super sweetie.).

The new guy is getting me set up. I ask for the headphones I've always had during these things - focusing on in-depth news stories on NPR helps me ignore the noise of the machine. New tech informs me that "We don't give headphones for MRIs of your head." Me, "Uh, yes you most certainly do, because I've had them every other time I've been here." Him, clearly disgruntled, grudgingly sets me up with the headphones. (Really dude? How hard was that?)

Then, later, when he pulls me out to inject the contrast (seriously, I've had so much gadolinium in the last few years, I might set off the sensors at the airport. And yes, I'm kidding about the sensors) he can't find a vein. Ah, medical people with crap phlebotomist skills! The bane of my existence. Anyhow, after multiple attempt with him digging for the vein, I'm losing what's left of my good humor. He asks about my other arm. Nope. Only my left, sorry.

Then he starts looking at my hand. Lessee, he can't find a vein in the crook of my elbow, so him digging around on a nerve-rich hand is going to go so much better, I'm certain. I'm thinking "Don't you DARE." But I grit my teeth and let him try. Because I refused to let him try the back of my hand first, he digs around on the inside of my wrist for a few, at which point, my good humor has permanently fled, and my bluntness has arrived with some force.

"You need to go find someone who knows how to do this." Him, stung, "I KNOW how to do this, I was a combat medic for 6 years!" I didn't reply but should have, "You could have fooled me. And while your service was nice, this ain't Iraq and I'm not bleeding out by the side of the road. You don't get to jam a needle in anywhere you damn well please." Ah the things I don't say! Definitely for the best, but the temptation is always great. Anyway, he gets a clue and goes to get someone else. My husband was there, and as he walked by my husband - who could view and hear much of what went on, he groused to my husband, "She's got all these good veins (right arm, back of left wrist) but she won't let me use them!" Yeah. Bitching to the spouse about how his wife is being unreasonable about refusing to be a pincushion any longer. Keeping it professional, yes sir. So he brings in a nurse, who pops the needle in, in the usual spot, first try. Nothing wrong with my veins after all. Oddly, there never really is, there is just more variability in the skill of who is doing the sticks. For this reason, when I do get someone who is good at their job, I make a point to formally thank them for their skill. But I have little patience anymore for the type of incompetence that tech displayed, and after you've hurt me a few times too many, I'm not going to be sweet about it, nope.

As I said, I have a ton of these experiences, and while they are not incompetence leading to permanent injury, they add up to me being in a somewhat permanent flinch mode. You never know what you're going to get, and it's stressful. I estimate it at 50/50 on any given day, that I will encounter a Nurse Ratchet over a Dr. Welby. (Some will get that and some won't - my age is showing, ha!)

Karen I appreciate you sharing your experiences with us and I am so sorry about everything you went and continue to go through. It really sucks.

Not a doctor story but a hospital story, Yale to be exact.

34 weeks pregnant, I lose the central vision in my left eye, go to my local hospital but I need specialized care so they transfer me to Yale. Get to triage and I see every specialist under the sun and they determine it was a blood clot that traveled and lodged into an artery in my eye. Branch retinal artery occulation, extremely rare in someone of my age (35) they had never seen this before. Literally had every scan under the sun since they considered this a stroke, one of the tests (don't know the technical term) involved a dye test where they were going to dye my arteries to check for more clots.

My SIL was 21 at the time and stayed overnight with me since they were keeping me a whole extra day for this dye test. When the nurse came in that morning she referred to it as a "dye study" and SIL immediately told me it sounded experimental and she didn't think I should do it. I dismissed that since we were at Yale, one of the top hospitals. Fast forward to the end of the second day the nurse comes in and tells me I'm being released. So I ask her about the dye test and she responds with:

"Oh, we can't do that test when you're pregnant".

Let's just say that I am more skeptical, more outspoken and much less trusting now as a result.

I'm sorry Stephanie and yes being outspoken and less trusting and just doing the best we can. It would be great if we could completely rely on the healthcare professionals but we cannot.

LLJsmom I remember what happened with your dad and thank goodness you guys were on top of it and were able to get through that awful time.

Something similar. I had pain under my right shoulderblade. X-ray showed nothing but the pain persisted. I told my PCP, "it is not that i am asking for painkillers, is it? I merely need to be sure that everything is OK", and they sent me for a chest CT.
A very well-known and experienced doctor looked at the scan and said it was all fine at the preliminary, and the pain was from hiatal hernia, but should anything be not OK, he'd call...
When no call from either him or my PCP came, I called the PCP myself. She was away but offered to check with the radiologist. I said, no, he'd call if something were wrong, right?
Wrong. When she got back, her nurse called me to check if I really had CT done at that place because the PCP called them and they could not find my scan. Long story short, the doctor had misplaced it (he blamed the secretary) and never did the final reading. I had pulmonary embolism. (It did not surprise me as I had puffy legs after each flight, and I was flying to Russia almost monthly, with my dad's illness. He was in much better shape than now, physically, but horribly depressed). Of course I was prohibited to fly, put on Coumadin, etc, etc.
A whole week elapsed between my CT and the diagnosis. I was very lucky.

OMG yes thank goodness you are with us today.

my story involves a very famous TV dr- you have all seen him, I guarantee.
My wife needed emergency surgery .... there was a blockage caused by a kidney stone.
The guy does the surgery- takes about 3 hours. It was ambulatory.
I took my darling wife home.
2 hours later she started running a 102 fever.
Dr TV? NOWHERE to be found.
I had to take her to the ER.
Thankfully this was about 6 years ago- she's better.
Every time I see this sucker on TV, a feel like smashing the screen

Thank goodness you were watching her carefully but boo to the TV doctor.

I have a very unattractive old man mole in a very sensitive area. At 16 for about 2 years the same physician's assistant told me it was genital warts. Being young I didn't think twice about it, though I didn't know how I would have contracted it. First time I saw a real doctor for my yearly pap smear I found out it was a harmless mole.

My labor with my daughter was 30 hours. At a certain point her heart rate began to drop. I had informed them that I was allergic to penicillin earlier in the labor. They asked me "what happens when you get it". I said I don't remember as I was 2 years old when the allergy was discoved. Without my knowledge or consent they administered penicillin anyway. I developed an intense full body boil-y rash after leaving the doctors office. I can remember my body radiated so much body heat my daughter wouldn't let me hold her to breastfeed.


Hopefully this helps. My mole story is embarrassing to me and it makes me mad that it is. I did nothing wrong.

Ugh sorry Niel. How they could administer Penicillin without your consent and after you informed them you are allergic. It escapes any kind of reason.

HotPozzum I am relieved for you that the end result was not deformity and how scary.

I think many many incompents physicians are never disciplined Missy.. My ex husband's uncle was a urologist and continued to operate when he had early dementia, no lie, they finally got him out when his sister went out to Cali and talked him into retiring..

My husband had a cancerous tumor on his abdomen, they 'forgot' to notify him of the biopsy results for 6 MONTHS it just sat around till somebody read it and then we had to have two emergency operations on him.. Personally physicians don't like what they do..

Kate, Exactly. Incompetence cannot be rewarded or ignored. The incompetent doctors need to stop doing what they do and allow the good doctors to take care of the people who need their help. I hope your dh is OK now.

 

[OreoRosies86]

I have a dental story to tell.
Five years ago I went to the dentist for a toothache. The dentist said a root canal was needed.
Afterwards, at home, the numbness in my jaw had receded, but the front of my chin and bottom lip was still numb. Several phone calls to the dentist later, I was assured that the numbness would eventually go away. Well it didn't.
After much online research, I had concluded that the numbing agent, or packing material applied inside the root, had damaged the nerve, and the nerve would probably not recover. This situation is common worldwide, and is called paresthesia. The dentists I spoke to acted like it is so "rare" and "unusual", and apparently didn't want to admit how common it actually is.
A few months later, Dentist sends me to an associate/specialist who couldn't explain my problem.
I spoke to some lawyers who specialize in medical issues, and I was told that since I had some recovery, and I am not slobbering or having trouble eating, I didn't have a case.
So five years later, my lip and chin are still numb. Luckily, it has not interfered with my speech, has not caused any eating problems, and nobody knows my lip is numb but me.

Ditto. Happened during surgery for an impacted wisdom tooth. This dude yammered on and on about how it was "just a bruise" and even the specialist said the nerve was fine. Which, great, except for that I have no feeling from my lip to my chin.

My epidural during my birth experience was applied incorrectly as well. Then while they were trying to figure out why the medicine feed had slipped, the nurse collided with the area where I was sitting and ripped the antibiotics iv right out of my hand. My husband was ready to kill someone.

 

[stracci2000]

Ditto. Happened during surgery for an impacted wisdom tooth. This dude yammered on and on about how it was "just a bruise" and even the specialist said the nerve was fine. Which, great, except for that I have no feeling from my lip to my chin.

My epidural during my birth experience was applied incorrectly as well. Then while they were trying to figure out why the medicine feed had slipped, the nurse collided with the area where I was sitting and ripped the antibiotics iv right out of my hand. My husband was ready to kill someone.

I am sorry that you are suffering with this too, Elliot.
I have gotten better at ignoring it over the years. In addition to the numbness, I sometimes have stinging and burning sensations.
And putting on lipstick is still a challenge.

 

[OreoRosies86]

I think it has caused my lip to droop but everyone says it is my imagination.

 

[anne_h]

In my case it was a pharmacist who caught a prescription error... a doctor had ordered medication for one of my kids at 10x the appropriate dosage. Decimal error. I understand how humans can make mistakes, and I'm glad in this case that it was caught through the regular checks and balances.

 

[tyty333]

Not a major ordeal but more a PITA...and probably not the Docs fault. The Doc was excellent and fixed my DD's issue. I am very thankful for the Doc
but during the surgery they used a clip to help stop bleeding. The clip was left in (on purpose). The clip should have been documented in the
surgical notes (type, size, make, etc) so if she had future surgery/x-rays/MRI they would know it was there. She had to have an MRI 6 weeks after the
surgery to see how things were healing. We gave them the surgical notes so they knew everything that she had done. They did an X-ray first and found
the undocumented clip and could not do the MRI without knowing what the clip was made out of because if it was the wrong metal going through the
MRI machine would be very bad. It took LOTS of phone calls to track it down and get the surgical notes updated before we could get the MRI done. So, it
was not really a Doc issue but a documentation issue that was a real PITA!

Edit...and I know since that was the only thing that happened during her surgery, I feel really lucky.

 

[Gussie]

When my son was 3 he was diagnosed with leukemia which has a very high cure rate for children his age. In fact, when the doctors were explaining everything a few days after his diagnosis, they almost seemed non chalant. I suppose it was a mundane easy case since his treatment protocol was well established and he was at a leading children's cancer hospital. A couple of weeks after he began intensive chemo he completely stopped eating and drinking and lost 8 pounds, 20% of his weight. Children who are on strong doses of steroids during treatment most often have ravenous appetites. He was in agonizing pain and screaming night and day. The doctors all dismissed my worries and sent us home from the ER 3 times as they couldn't find anything wrong. To their credit invasive diagnostic tests are usually avoided due to the risk of infection. I was beside myself with fear and finally we took him to the ER a 4th time and demanded he be admitted. After a few days on the cancer floor his hemoglobin level began to drop. His veins were all blown and the floor nurses could not get a line in. They ended up calling in the kangaroo crew to get him a line in for the transfusion he needed. They also called in the head of the ICU so they he could be admitted. During this time, I was changing his diaper and it was filled with blood. I literally fell to my knees. He was bleeding profusely and had already gone into shock. I am dead serious that the ICU doctor (who didnt even come into my sons room) asked me if he had been eating a red popcicle or drinking Kool aid. I COULD NOT BELIEVE IT! There also seemed to be some kind of bureaucratic indecision between the floor oncologists and the ICU doctor, almost a power struggle. He ended up having an emergency surgery to remove about a foot of his small intestine that was ulcerated due to the chemo drugs. He bled his entire blood volume, and he had the surgery while his neutrophils were at zero so the risk of infection was absolutely terrifying. The ICU nurses and the surgeons were amazing and I cannot speak highly enough of them. But that admitting ICU doctor was unbelievable. I also can't help but think that the ER doctors that sent us home multiple times might could have done more than they did. I should add that his oncologist later told me that the protocol for admission to the ICU had been changed after my sons case.

My son is healthy now and has been cancer free for 10 years. I am very grateful for the awesome doctors that helped him. They outnumber that one jackass.

 

[Calliecake]

Ceg, I'm so glad your son is doing well now and can't imagine how awful this must have been for you. Having to watch your small child be so sick has to be one of the worst things to go thru in life.

 

[Gussie]

Ceg, I'm so glad your son is doing well now and can't imagine how awful this must have been for you. Having to watch your small child be so sick has to be one of the worst things to go thru in life.

Thank you. He is a gift, for sure.

 

[TooPatient]

Oh, boy. Where to start! I will share a few that stand out to me for various reasons:

My most recent fun...
My feet/legs had swollen badly (like 50% or more large, could barely fit in my sandals even) and were very painful to the point that I ended up agreeing to go to urgent care as it was difficult to stand/walk. They took me down to the ER for suspected heart issues. Everything (heart, thyroid, blood sugar, cholesterol, etc, etc, etc) came back normal except for a bad UTI. Great. A bladder/kidney infection prompted an ER visit. I get started on antibiotics immediately and start having bad pain in my sides (like you'd expect with an infection). I try to be the good patient and follow up with my GP a few days later (the first day she is in after the ER visit). She runs the urine test again and finds no hint of infection.
Her solution? She told me that I am just fat and swelling, joint pain, etc is normal for fat people. I describe the other issues that left them concerned and she continues to tell me I am fat and should just exercise more and eat less.
I am getting more and more frustrated as she ignores my telling her my fitbit tracked 20,000 steps per day for over a year. During that time, I was also doing the equivalent of weight lifting for 2+ hours per day (including lots of 10-40 pound lifts, a dozen or so 40-50 pound lifts, and a dozen or so 70 pound lifts to chest height or better) all while tracking my food and watching calorie range.
So.... she sent me home with a list of tests to get done since I seem to think it is something more than just my weight (said with a tone of voice that was as near to an eyeroll as you can get).

me and the dentist...
Had two wisdom teeth removed. The assistant messed up the gas so they dentist got loopy while I was still freaking out. Thank goodness DH was in the room and noticed the issue. Then the removal was "more complicated" than they originally thought (despite xrays). The dentist managed to damage a nerve so I have a constant dull pain in my jaw (been something like 8 years now and the pain is still there). I am sure it is also related to the nerve, but they can't numb me as well any more. So when I had another procedure done it was EXCRUCIATING to get the Novocain injected. Fine on one side, but bad bad on the other. They used three times as much as normal trying to get me numb. It just wouldn't take. There is a section in the front of my mouth that they just can't numb so any work I need is done with full feeling.

DH...
Out on disability for 6 months. He could barely stand without help. Horrible pain all the time. Weak, shaking, just bad all around. Saw his GP, spinal specialist, neurologist, chiropractor/PT, SOMA massage therapist, and had scheduled with a rhuemetologist. He had more blood work than I can even count. Xrays, 5 MRI's, you name it. They were talking MS as a "best case" diagnosis. After all that, I was browsing here while he was curled up in pain and I was desperate for distraction as I was looking at getting married only to have to bury my new husband. (they were already talking degenerative, pain management, and end of life care!). I just happened to open a thread as one of the ladies here was talking about a vitamin deficiency. I wasn't looking for answers for him, just trying to keep up with everyone here and offer support/hugs from afar. Imagine my shock as I read her symptoms and it is EXACTLY what he is dealing with! All of the doctors were out for a week for Christmas so I grabbed a bottle of over the counter and had him start taking them (after checking with a pharmacist to be sure no interactions with the hand full of pills the drs had him on). He started to get better after just the first few dosed. It was amazing!
The doctors came back from vacation and were shocked to see him walking on his own. Explained what we tried and they actually argued me! "There is no such thing as a vitamin deficiency in the US. That is just for countries where people don't have enough food."
Come to find out they had never bothered to check those levels. Since "no one" has that issue, they never check.

Great grandma...
She was in pain for the last year or more of her life. The doctors brushed it aside as she was "old" and "old people have pain" so they never bothered to look. She was sure it was more but all of them told her she was "just old" and it is part of life. She spent the last few weeks in the hospital and they did a bit of looking at stuff just as a part of "making her comfortable"... Well, what do you know. Cancer! She had cancer all through her spine. The doctors chose (along with my family) to not tell her that she had cancer as that is what she had been so afraid of for the last year. There was no treating it by then (not sure if there would have been if they had bothered to look sooner) so they didn't want to upset her. I can't help but wonder how many other people die because the doctors brush them off due to "just part of old age" -- what a sad statement.

 

[valeria101]

Read everything, with horror. No story to add. Just ought to write this much:

You are astonishing, @TooPatient !

He started to get better after just the first few dosed. It was amazing!

 

[missy]

Reading the additional stories and sending (((Hugs))) to Ceg, TooPatient, Tyty333, anne_h, Elliot86 and everyone else who needs it. (((HUGS))).


Ceg, thank goodness your dear son is OK!
TooPatient you and your dh have been through so much. Incredibly strong people.

Everyone here is incredibly strong and resilient and a fighter.

 

[ksinger]

In response to TooPatient:

Oh, boy. Where to start! I will share a few that stand out to me for various reasons:

My most recent fun...
My feet/legs had swollen badly (like 50% or more large, could barely fit in my sandals even) and were very painful to the point that I ended up agreeing to go to urgent care as it was difficult to stand/walk. They took me down to the ER for suspected heart issues. Everything (heart, thyroid, blood sugar, cholesterol, etc, etc, etc) came back normal except for a bad UTI. Great. A bladder/kidney infection prompted an ER visit. I get started on antibiotics immediately and start having bad pain in my sides (like you'd expect with an infection). I try to be the good patient and follow up with my GP a few days later (the first day she is in after the ER visit). She runs the urine test again and finds no hint of infection.
Her solution? She told me that I am just fat and swelling, joint pain, etc is normal for fat people. I describe the other issues that left them concerned and she continues to tell me I am fat and should just exercise more and eat less.
I am getting more and more frustrated as she ignores my telling her my fitbit tracked 20,000 steps per day for over a year. During that time, I was also doing the equivalent of weight lifting for 2+ hours per day (including lots of 10-40 pound lifts, a dozen or so 40-50 pound lifts, and a dozen or so 70 pound lifts to chest height or better) all while tracking my food and watching calorie range.
So.... she sent me home with a list of tests to get done since I seem to think it is something more than just my weight (said with a tone of voice that was as near to an eyeroll as you can get).

Ah! Doctors showing their bias with those casually disrespectful and dismissive comments! How well I know them! (Yeah, I've got some tales in that category too, sadly) Let's see, you got the fat (as declared by the doc) woman bias AND the whiny female complaining about pain bias all in one shot. And by a woman doctor too. Impressive. And do remember now - about pain: if your pain is perceived by the doc, to be your own fault somehow (and often, when they can't figure it out in the allotted 15 minutes, they start searching for a way to shift the cause for it to you, which gets them off the diagnostic hook), it's different, and not quiiiiite as worthy of being treated as pain inflicted by some other, external method. Got it?

me and the dentist...
Had two wisdom teeth removed. The assistant messed up the gas so they dentist got loopy while I was still freaking out. Thank goodness DH was in the room and noticed the issue. Then the removal was "more complicated" than they originally thought (despite xrays). The dentist managed to damage a nerve so I have a constant dull pain in my jaw (been something like 8 years now and the pain is still there). I am sure it is also related to the nerve, but they can't numb me as well any more. So when I had another procedure done it was EXCRUCIATING to get the Novocain injected. Fine on one side, but bad bad on the other. They used three times as much as normal trying to get me numb. It just wouldn't take. There is a section in the front of my mouth that they just can't numb so any work I need is done with full feeling.

My husband has a very similar story - nerve damage early in life, more pain than normal in the dental chair because of it, can't numb his lower jaw where needed, so fear of dentists, but cavities. I started pushing, and long story short, we ended up doing his dental work under full sedation. Dentists who do that do exist. Seek one out in your area and avail yourself of him/her. Hock some things if necessary, but do it. My husband now knows he can go somewhere to get dental work done when needed, whereas before....

DH...
Out on disability for 6 months. He could barely stand without help. Horrible pain all the time. Weak, shaking, just bad all around. Saw his GP, spinal specialist, neurologist, chiropractor/PT, SOMA massage therapist, and had scheduled with a rhuemetologist. He had more blood work than I can even count. Xrays, 5 MRI's, you name it. They were talking MS as a "best case" diagnosis. After all that, I was browsing here while he was curled up in pain and I was desperate for distraction as I was looking at getting married only to have to bury my new husband. (they were already talking degenerative, pain management, and end of life care!). I just happened to open a thread as one of the ladies here was talking about a vitamin deficiency. I wasn't looking for answers for him, just trying to keep up with everyone here and offer support/hugs from afar. Imagine my shock as I read her symptoms and it is EXACTLY what he is dealing with! All of the doctors were out for a week for Christmas so I grabbed a bottle of over the counter and had him start taking them (after checking with a pharmacist to be sure no interactions with the hand full of pills the drs had him on). He started to get better after just the first few dosed. It was amazing!
The doctors came back from vacation and were shocked to see him walking on his own. Explained what we tried and they actually argued me! "There is no such thing as a vitamin deficiency in the US. That is just for countries where people don't have enough food."
Come to find out they had never bothered to check those levels. Since "no one" has that issue, they never check.

Oh man, the level of stupid in this one is epic. I don't know what vitamin you gave him, but doctors often being antithetical to even the most reasonable dietary interventions, is a perennial theme. But for one to argue with that no one ever has a vitamin deficiency in this country, when you have the walking refutation standing there, is that human tendency to defend a position that is propping up their mental house of cards - in this case, that belief that something she was not trained in can't have any validity, and that deeply held assumption that she is the smartest person in the room and that patients are stupid and can't possibly know anything more worthy than the doctor, not even their own bodies.

Aside from that, I do know that a reasonably competent MS neuro immediately tests for at least 2 vitamin deficiencies - B12 and D, when they are trying to close in on a dx of MS, since B12 deficiency especially, can be a mimic and result in brain lesions and cause many of the same symptoms. And 5 MRIs gets my sympathy and respect. Also, just for the record, the only doc who can reliably give an MS dx, is a neuro who specializes in MS. Truly, if someone else, even a neuro if he doesn't specialize in MS, ever attempts to make that dx, do NOT accept it. EVER. The criteria for diagnosing MS is pretty strict and well laid out by the MacDonald Criteria. Most docs have zero clue about it, or how to use it. Trust me on this one. MS is one of those conditions that you absolutely do NOT want to be incorrectly labeled with. And yes, it does happen.

Great grandma...
She was in pain for the last year or more of her life. The doctors brushed it aside as she was "old" and "old people have pain" so they never bothered to look. She was sure it was more but all of them told her she was "just old" and it is part of life. She spent the last few weeks in the hospital and they did a bit of looking at stuff just as a part of "making her comfortable"... Well, what do you know. Cancer! She had cancer all through her spine. The doctors chose (along with my family) to not tell her that she had cancer as that is what she had been so afraid of for the last year. There was no treating it by then (not sure if there would have been if they had bothered to look sooner) so they didn't want to upset her. I can't help but wonder how many other people die because the doctors brush them off due to "just part of old age" -- what a sad statement.

My greatest fear, playing out to a lesser degree in my life right now. Aside from the pesky dying bit, (and I really am very sorry to hear that your grandmother suffered so much - that is so horrible and nightmarish, and ultimately died before she might have otherwise, due to doctor arrogance and assumptions about "old" people - as if they are a different species) Google "undertreatment of pain". Here is but one of the many good ones out there.
http://www.socialworktoday.com/archive/091712p16.shtml

We're in a veritable crisis in this country, with the hysterical headlines about OPIOID ADDICTION!!!! and persistent myth that every patient is a probable opioid abuse/addiction on legs, and anyone who asks for them is absolutely NOT to be treated with them, even if the pain is totally ACUTE. And I'm approaching (have hit it actually) the age where 12 year old docs utter the phrase "Well, as you get older...." Makes me want to leap across the intervening space and throttle them. Because someone who is enough older than you to be your mother, really needs to be lectured on the changes that occur in the body as a person ages, right. I don't know what I'd DO without a newly-minted 28 year old doc to tell me about aging.

 

[tyty333]

Oh my gosh ceg, you could have had a really bad outcome. I'm am so glad your son is a healthy now. I just have to shake my head at your ER docs.