[Poetist]

On 12/20, I was late for my MRI appointment that should have began at 3:45 pm. As a result, I had to wait over two hours for them to fit me into the schedule.

It was shortly after 6 pm, when the MRI began, which was done WITHOUT contrast.


So, I don't check my email for about a week, but when I do I noticed that my doctor has sent me an email on that very day at 12/20 at 6:01 pm.


I go on my HMO website and nervously click on the email, knowing non-emergency MRIs should take a few weeks to review, not really realizing the signsigficance of the date on the email, until I was in bed thinking about the numbers.


(Yes, I have a weird quirk about numbers in that I rarely forget significant numbers.)


Anyway, I noticed that the email from doctor was dated the on the day of the MRI and before it was performed.



I initially thought he was getting on me for not making my appointment or just reminding me about it, but no. . .


The message from my doctor follows:


There is no interval change on MRI of chest. Our radiologist think it's likely thymic remnant or benign thymic hyperplasia.


End of message.


Okay to state the obvious, either my doctor is a psychic, or there is some kind of mistake.


With that stated:


I had an MRI without contrast. How can they know whether or not the MRI result showed a benign thymic hyperlasia?

I know many of you will contest that one can never know if a tissue is benign unless a biopsy is conducted, and I an a believer as well.


Anyway. . .

What do I do? Is this an error on the radiologist or neuro-muscular part?

As if I didn't have to worry about enough, now, I wonder how accurate were my tests.

To recap everyone on my roller coaster, I was first told I could not possible feel anything inside my body, even though I continue to declare I felt something around my chest area and even experienced a traumatic event of waking up one morning fighting to breathe.

After the lung doctor ordered up a CT scan, it showed I had an enlarged thymus. I was told it had a "remnant" then later told the tissue was 2.5 cm and last count 5.7 cm.

At first, the doctor wanted to do a thymectomy, then he did a 180 in about a month's time and said I didn't need surgery.

I need answers, because I see the doctor somewhere around Jan. 12.

Do I email him, highlighting the mistake, because it is a mistake? I saw the date on the email. In order for him to have written and sent that email, he would have received the results in the five o'clock hour, since the email was sent at 6:01 -- the hour I had my MRI!

Interesting note: I guess it was a God send that I missed my appointment, because it has opened up my eyes. Otherwise, I would not have questioned the results.

Plus, there is another little bit of info. The technician who ran the MRI did not know where the thymus was located on the body. She did wait and ask and the other tech told her it was located in the chest. He then told her where to shoot from above the collar bone and end at the lower ribs.

I guess it is better to ask than to do something stupid, but I still need to get to the bottom of this.

I need everyone's suggestions.

[Stellatum]

Wow. That is extremely disturbing.

My suggestion (just a suggestion) would be to approach the doctor first, and politely, without being accusatory, ask him to explain. If his explanation doesn't satisfy you, you can report it to your state's department of health. My state has a website, with a link on the front page on how to file a complaint. By law they have to follow up.

Abby

[suev]

First, I would enlist the doc as your advocate against the facility (radiologist) that performed the MRI. Your doc is only relating what he was told. Most never see the actual images of CT or MRI's. Everything is in terms of what the radiologist says (because medicine is so highly compartmentalized - the docs we see rarely 'read' anything in the radiologists pervue...they just report the findings).

I would approach it 'innocently' - like I'm confused...... or here's what I don't get.....
could there be a mistake?..... That (ridiculous) approach will probably get your doc most inclined to become your champion.

Re. contrast - - that was up to your doc to specify on the 'order'. If he did not say with and without contrast - they would not use contrast. (you, the patient, always have the right to refuse contrast - but never the right to add it!)

Re: the change in direction on the thymectomy, my first suspicion would be what your insurance requires for 'proof' the procedure is necessary. Believe it or not, some doctor's recommendations on course of treatment are increasingly influenced by insurance companies.

Call me cynical - but medicine is more big business than patient care in many instances. So important for us to be our own advocates.

Good luck with this - pls. let us know how it all goes.

[Stellatum]

I had an awful time with the contrast question when I had a thymus scan (I'm sorry, can't remember--I'm pretty sure it was a CT-scan, but it could have been an MRI). I had the scan done. My neuro says, "Why didn't they use contrast?" and sends me back. Turns out his secretary had forgotten to request it the first time. I go for the second time. Secretary forgets to request contrast again. Wait while they get hold of the neuro. Then the radiologist insists the contrast is useless for a thymus scan but agrees to use it since the neuro insists.

Me: hey, is iodine safe for someone with Graves' Disease? No one knows. Wait over an hour in my johnnie on the table--it's two hours past my appointment by this time--while they try to find out--with a wicked headache by now, because it's a fasting test and I'm in caffeine withdrawal, low blood-sugar, etc. They're still not sure. Me: Tell you what--I'm going home now. Please call me when you figure it out.

I get home and find "iodinated contrast dyes" on the list of drugs MG patients should avoid anyway. http://www.myasthenia.org/LinkClick....Ak%3d&tabid=84 Never did have that second scan. But I have a different neurologist now.

Abby

[Stellatum]

Suev has a good point! If someone is faking results, it might be the radiologist's office and not the neurologist's. Or if someone made a mistake, it could be the radiologist and not the neuro. Let us know what happens.

Abby

[Poetist]

Update:

My appointment is Jan. 10, so it's next week. I was thinking my doctor read a previous CT or MRI results, since I had about 5 of them. I was trying to jog my memory, but the only test that read "remnant" was the first CT.

However, that first CT scan was without contrast. The email read as if the test had contrast.

With that said, why would my doctor look at old test results and misread them? What would be the point of going through my computerized record and send me an email. Didn't he noticed the date and why would he add false information or was he being careless?

It is quite possible the radiologist sent the old results, but why would he go back, alter the test results with false information, and send it to my doctor, especially since I was not on the docket for the MRI until later in the day. What would be the urgency of sending the information on the very day the MRI was conducted?

Also, I thought that perhaps the information was from another patient's record. However, an enlarge thymus is rare. On top of that, some key details such as the "remnant" statement was what was initially told to me back in Jan. or Feb of 2010. Personally, I do not know how tissue can go from a remnant to 5.7cm to back to a remnant.


Needless to say, I'm still stumped.

Re. contrast - - that was up to your doc to specify on the 'order'. If he did not say with and without contrast - they would not use contrast. (you, the patient, always have the right to refuse contrast - but never the right to add it!)

I understand, but the point I was trying to highlight was the fact that my doctor or radiologist stated the results as if I had an MRI with contrast. On that day, I simply had an MRI. I was not asking for contrast, but in the email it read as if I had contrast.

First, I would enlist the doc as your advocate against the facility (radiologist) that performed the MRI. Your doc is only relating what he was told. Most never see the actual images of CT or MRI's. Everything is in terms of what the radiologist says (because medicine is so highly compartmentalized - the docs we see rarely 'read' anything in the radiologists pervue...they just report the findings).

That is true, but the doctor and facility are all one in the same HMO.

I get home and find "iodinated contrast dyes" on the list of drugs MG patients should avoid anyway. http://www.myasthenia.org/LinkClick....Ak%3d&tabid=84 Never did have that second scan. But I have a different neurologist now.

In MRIs, the term contrast is used, but it is does not contain iodine like CT scans use. Personally, I avoid CT scans after I was told of the high radiation.

On this particular MRI round, I had to advocate that I wanted an MRI, because my the radiologist ordered a CT scan. I said no way, because that would be three CTs in one year and the purpose of doing the test is to avoid cancer not create it.

Re: the change in direction on the thymectomy, my first suspicion would be what your insurance requires for 'proof' the procedure is necessary. Believe it or not, some doctor's recommendations on course of treatment are increasingly influenced by insurance companies.

Call me cynical - but medicine is more big business than patient care in many instances. So important for us to be our own advocates.

I was thinking the same thing.

My suggestion (just a suggestion) would be to approach the doctor first, and politely, without being accusatory, ask him to explain. If his explanation doesn't satisfy you, you can report it to your state's department of health. My state has a website, with a link on the front page on how to file a complaint. By law they have to follow up.

I have little faith in governmental agencies. I might run to the media before I trust some bureaucrat to do a quick call and simply file my complaint.

This doctor has now told me two things that have me going hmm....

First, he told me I was on the road to a thymectomy, then there is the email. I will have to ask him, politely, because he is a sweet man, how can this be.

However, foremost, I have to think of my health. I think time is of the essence, especially if something in my body needs to be monitored every six months. It concerns me that the results might be compromised in some fashion, and that someone has deliberately done that.

Luckily, I have an appointment with the MG Foundation, and hopefully, I will get the "good" doctor. Perhaps, I can share my concerns with him.

[AnnieB3]

Geez, I feel like I'm reading a conspiracy theory novel.

How about you fill out a request for medical records and get copies of both sets of films and both sets of written results? Get the FACTS straight before you go and upset everyone.

Doctors make mistakes and typos and have bad days, without any malicious intent.

I know that you are upset but you have to know the facts first.

Getting radiated every six months is nonsense.

Email time stamps are not always accurate.

Residual thymic tissue is normal. Hyperplasia is not very clearly defined and one radiologist's definition of it may not be another's. They all may feel out of their realm in determining whether a thymectomy is a good idea or not. You could always consult with a cardiothoracic surgeon.

I think if you simply clarify the facts and then proceed, everyone will be better off. Medical professionals have a very hard time admitting mistakes, so any discussions about a situation are better done in person, directly to the doctor in question. Don't do "end runs" around a doctor by talking to another doctor. That'll just dig an even deeper hole.

And don't sound serious at all about it. Act matter-of-fact. It will keep everyone's guard down.

This is all my opinion only, after many experiences of dealing with "problems" with doctors. It's up to you what you want to do.

If you are afraid of having cancer, get the films and get a 2nd opinion from another doctor, outside of this group.

I hope you can get answers soon.

Annie


There are many articles on the thymus. Normal size varies with age, as you probably know.

http://emedicine.medscape.com/article/361987-imaging

http://radiographics.rsna.org/content/26/2/335.full

http://books.google.com/books?id=BZ7...20size&f=false

[Poetist]

How about you fill out a request for medical records and get copies of both sets of films and both sets of written results? Get the FACTS straight before you go and upset everyone.

Luckily, I have my medical records waiting for me to pick up, which my (second opinion) doctor had me order before all of this went down. However, I do not know whether or not I will get films; I do know I will get the written results.

Doctors make mistakes and typos and have bad days, without any malicious intent.

I will try to get the facts straight, and I promise not to go postal.

Getting radiated every six months is nonsense.

Email time stamps are not always accurate.

I'm not getting radiated every six months, because I just kindly request a MRI every time the subject comes up at looking at my thymus.


In terms of the email stamp being inaccurate, well the email was sent to not only my email but my message center on my HMO website. Both emails have the same dates and times.


Plus, I checked by email on Dec. 24, so it was there by then, which would have made it three work days after the MRI.

Non-emergency MRIs take 10 to 14 days to get the results; that was what I was told by my HMO before all of this happened.

So, you can imagine my surprise when I check my email three days later, to only notice that it was written on the day of the MRI, before it was conducted.

I do not think this was an issue of a wrong date stamp; there was also wrong data printed, as if I had dyes placed in my body to determine whether or not the tissue was benign or malignant. I had no such thing.


I'm guessing the doctor had another patient on his mind, while he was typing my email, and he pulled up my record of my first CT scan.

You could always consult with a cardiothoracic surgeon.

Gee, I've never heard of a cardiothoratic surgeon. That's a good suggestion. Did a quick search. I will try to see if I can get a referral, but I do not know since my doctor has done a 180 on the thymectomy.

I think if you simply clarify the facts and then proceed, everyone will be better off. Medical professionals have a very hard time admitting mistakes, so any discussions about a situation are better done in person, directly to the doctor in question. Don't do "end runs" around a doctor by talking to another doctor. That'll just dig an even deeper hole.

I had always planned on meeting in person with my doctor, since my appointment is this Monday. My rule of thumb is to always deal with issues face to face. Plus, my doctor already knows that I am consulting with a specialist in MG, so there are no real secrets.

I try to be up front with doctors in hopes that they will be with me.

[mvoyvodich]

First, I'd ask for a copy of the MRI and printed results and ask if you and the doctor can go over them together. It is free for the MRI lab to provide you with one copy. This will give you and the doctor a chance to ensure it was done properly.

Second, if that doesn't satisfy me, then I'd just get a second opinion and even a second scan with contrast from a different MRI lab.

Originally Posted by Poetist

On 12/20, I was late for my MRI appointment that should have began at 3:45 pm. As a result, I had to wait over two hours for them to fit me into the schedule.

It was shortly after 6 pm, when the MRI began, which was done WITHOUT contrast.


So, I don't check my email for about a week, but when I do I noticed that my doctor has sent me an email on that very day at 12/20 at 6:01 pm.


I go on my HMO website and nervously click on the email, knowing non-emergency MRIs should take a few weeks to review, not really realizing the signsigficance of the date on the email, until I was in bed thinking about the numbers.


(Yes, I have a weird quirk about numbers in that I rarely forget significant numbers.)


Anyway, I noticed that the email from doctor was dated the on the day of the MRI and before it was performed.



I initially thought he was getting on me for not making my appointment or just reminding me about it, but no. . .


The message from my doctor follows:


There is no interval change on MRI of chest. Our radiologist think it's likely thymic remnant or benign thymic hyperplasia.


End of message.


Okay to state the obvious, either my doctor is a psychic, or there is some kind of mistake.


With that stated:


I had an MRI without contrast. How can they know whether or not the MRI result showed a benign thymic hyperlasia?

I know many of you will contest that one can never know if a tissue is benign unless a biopsy is conducted, and I an a believer as well.


Anyway. . .

What do I do? Is this an error on the radiologist or neuro-muscular part?

As if I didn't have to worry about enough, now, I wonder how accurate were my tests.

To recap everyone on my roller coaster, I was first told I could not possible feel anything inside my body, even though I continue to declare I felt something around my chest area and even experienced a traumatic event of waking up one morning fighting to breathe.

After the lung doctor ordered up a CT scan, it showed I had an enlarged thymus. I was told it had a "remnant" then later told the tissue was 2.5 cm and last count 5.7 cm.

At first, the doctor wanted to do a thymectomy, then he did a 180 in about a month's time and said I didn't need surgery.

I need answers, because I see the doctor somewhere around Jan. 12.

Do I email him, highlighting the mistake, because it is a mistake? I saw the date on the email. In order for him to have written and sent that email, he would have received the results in the five o'clock hour, since the email was sent at 6:01 -- the hour I had my MRI!

Interesting note: I guess it was a God send that I missed my appointment, because it has opened up my eyes. Otherwise, I would not have questioned the results.

Plus, there is another little bit of info. The technician who ran the MRI did not know where the thymus was located on the body. She did wait and ask and the other tech told her it was located in the chest. He then told her where to shoot from above the collar bone and end at the lower ribs.

I guess it is better to ask than to do something stupid, but I still need to get to the bottom of this.

I need everyone's suggestions.

[Annie59]

Yes I agree with mvoyv in that I have had much cleared up by getting copies of results and doctors notes. This whole situation for you is really wweird and not something I would see as professional. It doesnt seem clear who made the goof. I sure have run into people trying to cover their behinds which I wonder is part of the many new pressures of the medical system. I try to step back and take a 'one down' position to see if that gets them to sort things out with less defensiveness.

Annie59

Originally Posted by mvoyvodich

First, I'd ask for a copy of the MRI and printed results and ask if you and the doctor can go over them together. It is free for the MRI lab to provide you with one copy. This will give you and the doctor a chance to ensure it was done properly.

Second, if that doesn't satisfy me, then I'd just get a second opinion and even a second scan with contrast from a different MRI lab.