thoughts on reading my own medical records

I obtained a copy of my medical records and it was really interesting reading about my "case." First of all, under the diagnoses, along with Crohn's disease it says "situational anxiety." It made me laugh because I am a mental health therapist and there is no such psychiatric diagnosis...he could have picked Adjustment disorder with Anxiety, General Anxiety Disorder, or something. But also, I thought, "Yeah, thats right, I have a "situation," here....I have out of control Crohn's disease and I'm anxious about it!!!!!!" Actually, I'm probably getting closer to "total nervous breakdown," but that also is not a real psychiatric diagnosis...although way closer to the truth!!!!! "Situational anxiety" sounds way too sane for me!!!!

The other thought I had was all the pain and suffering that was missing in the chart. But all of us here know about that:)

The only thing you need to remember about medical charts is that they are there to protect the doctor not to educate you. LOL. Medical charts used to be a constant source of amusement for me, but I stopped laughing after my last surgery. I woke up to find that my voice was no longer working. I squawked and quacked and buzzed. I had lost about two thirds of my pitch range and I couldn't control the pitch. Really weird. It was the first thing I questioned when I finally came out of the anesthetic. I was reassured then and through the rest of my stay at the teaching hospital where my surgery was performed that this was just caused from irritation from my breathing tube and would resolve. Then I became aware of a burning pain in my throat. It was terrible. I couldn't eat, I had difficulty swallowing and I woke up choking on spit. This was attributed to the NG tube and again I was told it was all normal.

Three weeks after surgery, I contacted the anesthesiologist who supervised the intubation (you guessed it. A resident did the procedure) to ask him if there had been any difficulty with the intubation because I was unable to eat without choking and pain and my voice had not come back, and he expressed surprise because he said he'd reviewed the chart and not only was the intubation non-traumatic, but "there's nothing in your chart to indicate you had any concerns".

My concerns were not treated seriously because there was nothing in the charts and I even began to question whether I was making a mountain out of a molehill. I wasn't of course. the joint that governs the vocal cords had been broken during intubation. It took eight months to get the right diagnosis and my voice is permanently damaged because it was too late to re-set the joint.

I was furious when I realized that none of my concerns had been charted and I complained to the body that regulates the practice of medicine. The complaint was comprehensive. I was called in to provide testimony, the physicians about whom I complained were brought before the investigatory panel and an expert in otolaryngology testified as to the extent of my injury. In the end it was the lack of anything in the charts that the regulatory body used as the basis for dismissing the complaint. Basically they said it was my word against the chart when it came to the question of whether I had raised concerns while in hospital.

So now whenever I relate something that I think is important to my physicians, I make a point of saying, " would you note in the chart that ..." On several occasions, I have followed up an office visit, or a diagnostic procedure with a letter to the physician or the manager of the unit.

In short, my experience has made me the patient from hell.

Oh and by the way, why shouldn't you be experiencing "situational anxiety". Hello? Reminds me of when I had my first attack of what would eventually be diagnosed as crohn's disease. It was only eight months since the death of my six month old Daughter (SIDS) and I was five months pregnant when I developed horrendous gastritis. I had never felt so sick in my life but it wasn't until I started spotting and having what i thought were contractions (turns out they were intestinal spasms) that I went to the ER and was admitted.

A year later on my way for an assessment at the Lahey Clinic in Boston I took out my medical chart (which was sealed in an envelope of course) and read through my chart. Apparently I was exhibiting signs of depression because of the death of "another child" because I was excessively tired and reluctant to get up and mingle in visitors lounge, preferring to stay close to my room. Yep, I was trying to cope with running to the bathroom 18 times a day, vomiting and in pain, but his major finding was that I was suffering from depression complicated by gastritis.

And then there's the chart from my last hospital stay. There's not a word about vocal problems, choking and burning pain in my throat, but apparently I had a self-reversing stoma because according to the chart, "the patient received education for her stoma". What a joke! I've never had a stoma and i certainly have never received education for one.

Yep! This could be a new thread -- what's the funniest fabrication you've ever discovered in your chart.

Hmmmm. Guess that is what they could call mine too. We should all be "patients from hell". I went to a neuro doc, for a referral that I requested because of damage from B12 def. He told me that my sx would clear up within 4-6 wks. I could barely walk or bend, had been seen for dizziness, palpatations and numbness/tingling spreading from feet to face and I was so relieved to be dignosed that I was crying in his office. When I went back in 6 weeks for a follow-up, and the sx had eased but not gone away, he told me that it may be permanent, I cried again. Weird thing is, I have never cried before or since at an MD ofice. Anyway, when I got a copy of my chart to take to Cleveland Clinic in Fl., He wrote that I was depressed. And I have never taken anti-depressants. Needless to say, I never went back, but that is how you get labeled. I actually got married according to my last ER record, because the doc assumed my significant other at the bedside was my husband. Now what will my disability insurer think of that, when I didn't declare his income?

Other people mention what they do for work. I was not trying to come off as an expert...quite the opposite. I'm sick and miserable, and musing on what it feels like to read my own chart.

hrm if I had a nickle for every doctor who wrote me off and wrote things in my charts like "narcotic abuser" (I'm intollerant to narcotics) and on my last visit the er doctor actually came to me and asked (as if he knew the answer) if I was under the care of a Psychiatrist, I had to see one for my workers case evaluation and the Psychiatrist belongs to Kaiser which was the er that I was out

Can doctors see in your files wether you are seeing a Psychiatrist?

He acted like he knew and then suggested that perhaps I should see the Psychiatrist
about my abdominal pain seeing as the "xray" they did was so normal and all.....

So sorry your cheap, grainy, fuzzy looking "xray" didnt show you what you needed to know, geez I must be crazy for forcing (some) Doctors to do their job.

I dont even want to list all the times Ive felt slighted leaving a Doctors office, I feel like cattle most times I go, ptretty sure everyone else does to.

I gotta tell ya, er is the worst, they use those doctor notes like the last testament, if its written down then it must be true

whoa, just looked up at my thread....seems I may have a few issues with doctors notes myself eh? :)

all in all though it has been a learning experience, I have learned to really converse with my doctor now, to lay things out on the table, if I have a question or problem (imagined or real) I talk it out with my doctor, I dont care if its about my health or his assistant being rude to me on the phone, if its irking me, taxing my emotions, then Im gonna bring it up...

If it makes me look crazy so be it, it isnt my intent, I do it respecfully and with an even tone after thinking about it for a few days at least before I decide wether its a battle worth fighting, many times its better I let things go, as my brain may occasionaly focus on some negatives when what I really need to be doing is focusing on the positives :)

Post Edited (Blue Velvyt) : 1/5/2008 1:36:02 AM (GMT-7)

Hey, getting copies of our medical records "should" scare the heck out of you! There are so many "unimportant" mistakes - like left hand instead of the actual RIGHT hand that you can't help but wonder WHEN is a "critical" mistake gonna be put in your record.

I once mentioned to a doctor about all the "minor" mistakes I've noted in my records and he said: "That is why I always dictate my notes EVERY THIRD PATIENT"!!!

EVERY THIRD?? WHY ON GOD'S GREEN EARTH NOT IMMEDIATELY WHILE OR AFTER SEEING THE PATIENT BEFORE SEEING THE NEXT PATIENT!!!!!

ONE doctor I've seen (and I totally disliked him) carried a hand held size tape recorder in his pocket. He whipped that baby out near the end of our office visit and dictated the results of our visit whilst I sat there. Even then, he made one mistake I corrected him on and he did note that mistake in his dictation. Now THAT I thought is what EVERY doctor should do!!!

I've read several times that doctors only hear the first three complaints or symptoms you address during your office visit. I've had times I've wondered if they heard past "Hello doctor".

Good Morning,

I will only make a few comments.  I am sorry if you have had bad experiences with physicians, but please remember your medical record reflects Objective and Subjective comments by the physician.

If you have an issue that is a possible malpractice, do not talk about it with anyone other than your attorney.  That is just fyi.

If your venting, perhaps say that in your post as we will always have a debate over good doctor/bad doctor and good patient/bad patient. We are all here to support and show caring.  Having Crohn's Disease is a tough road, I know this and everyone of you lives this daily.  Each person has their own background and experiences to draw from.

You all have my respect and admiration for living this disease and not letting it control you.

God Bless

Kitt

Nanners,

I am sorry I did not mean to come accross that way.  I agree it is great to share, my concern was new people reading might misinterpret the posts as anti physician, and I would never want someone to not seek medical help . I did not mean to imply members were attacking each other.  I have not seen that. 

I truly care deeply about everyone here and I am trying to get to know everyone...........I know I am the newbie here as a Mod and I will always do my best to keep the boards safe and comforatable for all.

Perhaps I should have posted an intro re myself but I did not want to come on with a long intro and be perceived as grandstanding. :)

I am always open to members opinions and my email is wide open too.

I would be interested in your comments.

Thank you for stepping forward, I appreciate that very much.

Respectfully

Kitt

I personally have tried to convince some doctor's that my anxiety IS situational. I didn't know this term but tried to explain that it was cause = effect. Meaning that my anxiety was stemming from my illness and lack of proper treatment and not the other way around.

I do think at times patients do a much better job.

There is a neurological institute in colorado thats quite interesting. It has successs stories. This one lady with parkinsons' hands began to shake one day and she reached out to steady her one hand, and her whole body then began to shake.

To cope with what she began to deal with she wrote some morbid poetry to try and express all of her fears and feelings. This book called "The Dance" (for obvious reasons) is now requested my neurologists and other healthcare professional's themselves.

I was happy to see that some doctor's wanted to learn from their own patients.

This thread has been very interesting to say the least.

thanks

kiera

P.S. I learned alot of helpful information such as stating up front that I'd like a copy, that way the doctor knows ill be looking to ensure he's correctly dictated what took place. I also learned first hand that you can be fired by a doctor for what he calls anxiety. Even though the very books this doctor handed me said "this is one of the hardest dx's a doctor has to tell a patient" it didn't seem to make him understand my being upset. I guess from being in the military , we were taught to "take human matters into consideration" and sometimes the human element is far removed in these situations. (big mistake)

Kitt, once you explained about not wanting newbie's to shy from medical care, then i could see your point. I agree however that everyone can learn from this and I believe we all knew we were venting. Trying to release some of our hurts by sharing.

We all appreciate mod's work too. It wasn't as clear at first of the reason you were posting what you did. Once explained , it was all "good".

I've definitely learned now to pick up my reports. I've had 5 colonoscopies for 10yrs rectal bleeding, of course I'm anemic and one doctor dx'd me with a colicky colon haha. At any rate, when humor fails, sometimes venting does work.

Thanks to all who shared in this thread, it was enlightening.

After reading and going over this thread, I think I am going to start bringing with me some questions and or complaints (sx) computer generated, and request that the doc put it on file. Maybe that way, all issues will get addressed. Very concise so he/she won't get bored. Now that would probably really make me the patient from hell.

Jody, that pediatric doctor is correct as far as the governing medical licensing boards are concerned.

Personal example: I had a catract I needed removed and an implanted lens. We have an exceptionally good ophthalmogy surgeon in town and when I saw him we discussed and agreed upon a "distance lens" at my request. I've worn reading glasses for years and do NOT want to have to wear glasses full time for distance. Fussing w/contact lenses "ain't" my bag. I'm a wash n wear n out the door kinda gal.

As it turned out I was going to be having to spend some time near a University affiliated, nationally known, eye clinic. The head honcho oph. surgeon was nationally known and respected. I figured as long as I had to be in the area I'd get a second opinion.

I was not only upfront about wanting a distance lens implant rather than a reading lens implant but I also provided him w/the measurements, figures, etc. including pictures of the eye in question. (NEVER get both eyes done for cataracts at the same time!).

The clinic ran all their own tests and measurements. Since they could schedule me whilst I was still in the area I figured why not have it done there. So I did.

The sheister gave me a reading lens instead of the distance lens I made it clear I wanted and was under the impression he understood that!!! (The opposite eye had good distance vision, the eye being done did have somewhat better reading vision is I'm sure why he took it upon himself to provide a "better" reading lens than my own in that eye.

BUT to add insult to injury, the sheister was off in his measurements (an assumed and accepted but rare occurance). So, now not only do I have to hold reading material almost to my nose, but I can't drive at night w/o a contact lens due to halos from headlights, street lights and even well lighted business districts. Even glasses won't help, has to be a contact lens - or let someone do refractory surgery on that eye.

So I filed a complaint w/the state licensing board. He got a slap on the paddies for not making note of our discussion or that he intended to implant a reading lens. However, I made the mistake of not providing the measurements, and agreed upon lens, etc. from the first oph surgeon because I had to sign a ROM for the state to institute the investigation and I wrongfully assumed that they would request that information from the first doctor so it was also noted that I failed to document my side of the story.

In effect, as that pediatric doctor said, if it ain't in the chart, it didn't happen.

The University eye clinic did offer to provide a contact lens or to do refractory surgery, etc. But I flat told them I had NO INTENTION of letting ANYONE who had trained under or worked w/that oph to touch my ever touch my eye again!!!!

So now I don't drive at night unless I have to. I keep a contact lens in my car just in case. And I cuss that sheister out every time I'm in my car and its getting close to dusk. I also have a voodoo doll w/his name on it so full of pins its a shapeless mass.