My CT scan report gave me a good chuckle today.

[SpaceflightAddict]

My doc sent me for a CT scan, since I have not been feeling great, and some weird things came out of my nose recently. My insurance company decided that they would not pay for the place I had been getting my CT scans done at anymore, and sent me to another facility across town to get them done. I made sure the new place had received all of my previous scans and my medical history before I went in for the scan... but I get the feeling they did not look at them before doing the report.

When reading this report, please keep in mind that I have never, ever, ever had any surgery on my sinuses...

http://i.imgur.com/7ZCI6WI.jpg

I got a pretty good laugh out of it, but I am sure my doctor will not be as entertained as I am.

[windchime]

The sad state of American medicine. I'm guessing that someone else got your report. It is funny is a sick, twisted sort of way. :w00t:

[SpaceflightAddict]

The sad state of American medicine. I'm guessing that someone else got your report. It is funny is a sick, twisted sort of way. :w00t:


I am pretty sure that I got the right report, what I think happened is that whomever was "reading" the CT scan has never seen a Wegener's patient, and assumed that the only way for all those bits of my sinuses to be missing was extensive surgery.

Don't get me started about the state of American medicine... my insurance provider dropped Johns Hopkins from my list of approved providers at the start of this year, and I had to fight with them for two months to keep them paying for my appointments there. I could rant for hours about the whole situation.

[me2]

I had sinus surgery a few months ago for the first time and just before getting wheeled in one of the docs was talking to me - you know the little talk to comfort you with their competence and omnipotence.
He then mentions my previous sinus surgery....
Uh, doc, I've never had sinus surgery- I would have remembered it.

He looks rather puzzled and says that he just assumed I had because of how my CT looked.

I didn't freak out. The place I go is a teaching hospital and he was not my ENT or my surgeon just someone helping out on my case- and learning.

So, it was a bit funny.

Oh, and my sinus surgery was a ROARING success. I had been suffering from infections that even antibiotics were not clearing up. The surgeon did an amazing job of rearranging things so that my sinus's feel better than they have for many years. I also had a dacryosystorhinoctomy (called a DCR) at the same time. The drainage for my left eye was scarred shut (common in WG) and I had infections in my eye that would not go away. That too is a roaring success. My eye drains normally now and feels better than it has for years.

Many years ago I had a DCR on my right eye. At that time it was a fairly major surgery that involved cutting into my face and drilling a one inch hole through the bone. The current method of DCR is minor in comparison and this is FANTASTIC news for WG patients as we are common customers for this procedure.

It will be interesting to see what your doc wants to do with the condition of your sinus's. Mine have been bad for many years but I was not a candidate for surgery because I had active disease.
I was told that because of the active disease I would not heal properly and likely end up in worse shape than I already was. I'm thankful for that advice and the fact that I have been doing good enough to finally get my sinus's fixed.

[mishb]

I am pretty sure that I got the right report, what I think happened is that whomever was "reading" the CT scan has never seen a Wegener's patient, and assumed that the only way for all those bits of my sinuses to be missing was extensive surgery.

Don't get me started about the state of American medicine... my insurance provider dropped Johns Hopkins from my list of approved providers at the start of this year, and I had to fight with them for two months to keep them paying for my appointments there. I could rant for hours about the whole situation.


Yes, I assumed that it was your report - and hey, you don't seem to have much sinus left from all accounts :razz:

I'm thinking that you may have been abducted by aliens and they performed sinus surgery on you without your knowledge - it's the only possible explanation :w00t:

[Debbie C]

I think its pretty scary that they can be so wrong..makes you wnat to go to the drs.:confused1:

me2- That first surgery sounds horrible,I'm glad surgery techniques have improved and you are feeling better.:biggrin1:

[Alysia]

I don't understand much from that report, but isn't it similar to what is going with you, Anne ?

[annekat]

I don't understand much from that report, but isn't it similar to what is going with you, Anne ? I don't know how similar it is, some, I'm sure.... but it is true than my scan technician also misinterpreted the info. My ENT had another scan done from a different viewpoint, there at his office, and interpreted the scan himself, which showed a different result. I'll go into more detail when I get the results of next Tuesday's MRI, which is being done mainly to analyze the areas around my eyes, to see if sinus bone erosion is causing my double vision. I'm hoping to get some answers on the dizziness and vertigo, too, and get a clearer picture of what I've been told about the sinuses and ears so far. They'll be checking for things like strokes and other brain stuff, as well, though the eye doc doesn't think the brain is causing the problems. I haven't said a lot about all this lately because it still confuses me and I hope to be able to clarify later.

[annekat]

Alysia, I think you are right about the part about the wide open sinuses, probably meaning that in Andy's case as well as mine there is a lot of erosion of the sinus bones, especially the thin ones that border with the nasal cavity. It will be interesting to see how much clearer the MRI is and if there is as much room for misinterpretation by the technicians reading it. I'm hoping the ordering eye doc has put a notation on my chart saying that I have WG, so they can take that into consideration, if they know what it is.

[sbeach78]

Anne, just to let you know I also have double vision, after scanning my eyes there was fluid building behind my eyes, due to the small veins that usually act as a sump pump, no longer working. They belive it's the pred. I am not sure so I too would like to hear the results you get also. I have sinus involvement too.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[annekat]

Anne, just to let you know I also have double vision, after scanning my eyes there was fluid building behind my eyes, due to the small veins that usually act as a sump pump, no longer working. They belive it's the pred. I am not sure so I too would like to hear the results you get also. I have sinus involvement too.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2 Thanks, I think there are a few possible causes related to WG.... it will be interesting to see and I will report to the best of my ability. The eye doc did say my eye pressure was fine, whatever that means.

[windchime]

Thanks, I think there are a few possible causes related to WG.... it will be interesting to see and I will report to the best of my ability. The eye doc did say my eye pressure was fine, whatever that means.

It means you don't have glaucoma. Good thing. :thumbsup:

[annekat]

It means you don't have glaucoma. Good thing. :thumbsup: Well, it wasn't the usual glaucoma test, with the puff of air, and he said it was something a little different, but I guess it could still mean that. I kind of wondered if the fluid build up behind the eye, which was mentioned above, could also increase measured eye pressure.

[lag713]

Thank you for sharing your ct scan results! It's good to know what may be "normal" for wegs. This thread has me wondering if I need to get a CT scan of my sinuses because I've had nasal and facial pain. I hope there isn't anything going on beneath the surface.

Anne- I hope you get good news from the doc!

[annekat]

Thank you for sharing your ct scan results! It's good to know what may be "normal" for wegs. This thread has me wondering if I need to get a CT scan of my sinuses because I've had nasal and facial pain. I hope there isn't anything going on beneath the surface.

Anne- I hope you get good news from the doc! It wouldn't hurt to know what is going on in there. If there is bone erosion, I don't know if it can be helped or stopped in its tracks beyond the standard WG treatments you are probably getting to slow the disease down. But it might help to explain some of your pain and such. There are several on here, I think, including me, with extensive bone erosion of the sinuses, and I think it is mainly the thin bones that are near the nasal cavity and eye sockets. Then there can be spontaneous bone thickening in some areas, too, as in my case, which can actually seal off some of the sinus tissue that would normally be subject to infections and such. So it can have some advantages. In any case, it is something most of us can live with and I still feel pretty normal in that area as I go about my daily life. I have some weird sneezes, though. My voice hasn't changed, as I've heard it can with some. Anyway, I go in for my MRI today and will report as soon as I know and understand the results, and whether this bone erosion is what is causing my double vision. Thanks for the good wishes.

[D.B.]

My doc sent me for a CT scan, since I have not been feeling great, and some weird things came out of my nose recently. My insurance company decided that they would not pay for the place I had been getting my CT scans done at anymore, and sent me to another facility across town to get them done. I made sure the new place had received all of my previous scans and my medical history before I went in for the scan... but I get the feeling they did not look at them before doing the report.

When reading this report, please keep in mind that I have never, ever, ever had any surgery on my sinuses...

http://i.imgur.com/7ZCI6WI.jpg

I got a pretty good laugh out of it, but I am sure my doctor will not be as entertained as I am.

So good to have sense of humor dealing with these issues! (I have absence of lower septum, right sided middle turbinate, left inferior turbinate, and left interior hard palate). Bit of stretch to just "decide" that you had had prior surgeries!
Also chuckled at the closing of the report "Thank you for the opportunity to participate in the care of this patient".
Hope you are feeling better

[annekat]

I also noticed they spelled "turbinate" as "terminate".

[SpaceflightAddict]

As a follow up to the previous report, I thought I should post this update.

Johns Hopkins took a second look at my CT scan, and came up with a much different interpretation. It is amazing how different things can look when you pay attention to past results!

RESULT:

OUTSIDE FILMS PRESENTED FOR SECOND OPINION CONSULTATION

PROCEDURE: CT maxillofacial without contrast complex

INDICATION: Wegener's granulomatosis

FINDINGS:

Redemonstrated is severe osseous destruction and bone loss involving the
nasal cavity and paranasal sinuses and petrous left temporal bone. There
is destruction of nasal septum, medial wall of the bilateral maxillary
sinuses, anterior sphenoid, inferior left petrous bone, inferior
turbinates and attenuation of medial nasal turbinates, unchanged. Osseous
destruction extends from the posterior lateral nasopharynx to the petrous
apex of the temporal bone, unchanged. This destruction affects the
descending and transverse portions of the petrous internal carotid artery
on the left side with soft tissue likely abutting on the anterior lateral
wall of the vessel . There is severe mucosal thickening of bilateral
maxillary sinuses, unchanged. There is moderate mucosal thickening of the
ethmoid sinuses, slightly increased compared to the prior study. Frontal
sinuses are clear, unchanged. Moderate mucosal thickening of the left
sphenoid sinus is unchanged.
Orbits are otherwise normal with no evidence of infiltrating soft tissue.
Left mastoid effusion is noted which has increased compared to prior
study.
There is a possible area of dehiscence along the posterior ethmoid region
seen best on series 400 slice 20 bilaterally extending to the
intracranial compartment. This is suggested also on series 4 a one slice
29 on the left side and 26 on the right.
Visualized brain parenchyma are normal.


Impression

IMPRESSION:
Outside images submitted for second opinion consultation.

1. Stable diffuse destructive process involving the nasal cavity and
paranasal sinuses and left petrous bone consistent with patient's history
of Wegener's granulomatosis. There is moderate to severe mucosal
thickening of the paranasal sinuses which is relatively stable with only
interval worsening of mucosal thickening of the ethmoid sinuses.


2. Stable osseous destruction extends from the posterior lateral
nasopharynx to the petrous apex. There is soft tissue which abuts on the
left internal carotid artery where the canal has been eroded by the
granulomatous tissue. Previously there was air around the carotid artery
seen on September 30, 2013. There is interval increase in the left
mastoid effusion.


It is really amazing how different things look when a doctor reads the past results, and understands the kind of destruction Wegener's can inflict.

[annekat]

That is interesting, Andy. I recently got back the results of an MRI ordered by an eye doc, which talks about a lot of the same kinds of bone destruction, but I haven't gotten a chance to talk to the eye doc or my other docs about it yet. It also contains some suspect language and conclusions indicating a lack of understanding of WG. There was no previous MRI to compare it to, but there were some CT scans which should have been compared to each other earlier, which my ENT went over with me in his office after giving me an additional one there showing a more complete view. It is hard for me to understand all the results of these tests with different people looking at them and giving different interpretations. I will report more once I talk to my eye doc who ordered the latest test. But what I can tell from the printout is that there appears to be nothing abnormal going on in my brain, and there is an indication that the bone erosion is not affecting the orbits, that is, causing the double vision I've been experiencing. Hope to hear today from the eye doc, as he did try to contact me Friday eve. Thanks for sharing.

[jvilner]

Good luck annekat at the eye dr. I'm going tomorrow to mine to figure out what's up with my vision problems. Have double vision with numbers mostly like license plates.

[annekat]

Good luck annekat at the eye dr. I'm going tomorrow to mine to figure out what's up with my vision problems. Have double vision with numbers mostly like license plates. Oh, that is interesting.... there is a thread on here about double vision, and different reasons were given. My eye doc thought it might be the sinus bone erosion affecting the adjacent orbits and making the eyeballs unstable in their positioning.... the MRI report, though, implies otherwise, but I'll have to get his interpretation of it. If yours is mainly with numbers, I guess it isn't quite as bad as mine... I can see two people where there is one, but it can vary with distance, angle of vision, etc. and from one day to the next. I do find driving the most difficult but can manage it. Good luck getting yours figured out.

[jvilner]

I don't see double people as I reported before but I am blurry. It's not constant either is yours?

[annekat]

I don't see double people as I reported before but I am blurry. It's not constant either is yours? Mine is worst if I'm looking through the upper part of my eyeball, which is why it is most noticeable at distances, and in that sense it is constant. But if looking out of the lower or middle part of my eyeball, it can change and is not constant. If I'm sitting in a low chair and people are walking by me in an aisle about 10 feet away, and I'm looking up at them, I can see them as double on a bad day. Or if I'm looking across a large expanse at some people, I will probably see them as double unless I lift my head enough to see them out of a lower section of my eye. That's why driving is hard, I can get rid of the double by tilting my head back a bit, but then my neck gets stiff. Other than the double part, things aren't blurry, and I can always see fine out of just one eye by closing the other. It seems to me it may be getting better lately. I'm hoping it's just weak eye muscles, or inflammation of such, either of which might have room for improvement. Still haven't heard from the doc.

[jvilner]

Interesting....Good luck with the doc. I'll update after my appointment tomorrow. It's all do weird all these "extras" we get from this crummy disease.

[SpaceflightAddict]

It's all do weird all these "extras" we get from this crummy disease.


The weird extras can be soooooo much fun sometimes though. Johns Hopkins is a teaching hospital, so there is always plenty of fresh meat to go around. A couple of times, my main ENT doc has asked if he can bring in some students, or other visiting doctors to "show off" my impressive sinuses. I always agree, because seeing their reaction of horror/interest is always good for a laugh, and they get to learn something and see what Wegener's can do up close and personal. I always make sure they get to see what came out of my nose while I was hospitalized.

Anne, good luck with the eye problems! I hope they get to the bottom of it soon.

[annekat]

Andy, I'm just relieved that the MRI report said nothing is wrong with my brain, etc. But to get back to the original point of your thread.... I thought I'd share some weird, and I guess laughable, terminology from the report, from the different sections where whoever was typing or writing the report, taking dictation, whatever, was trying to say Wegener's Granulomatosis and said something a little different:

"HISTORY: diplopia, vertigo, history of Wegener's foranimal stenosis." (italics mine)

Then there was the FINDINGS section, which was intelligently written, in detail, and correctly identified me as having a history of Wegener's Granulomatosis.

But then, under IMPRESSION, came this statement: "Extensive changes within the sinonasal cavity which may relate to prior surgery or bone destruction given patient's history of Wegener's canal stenosis." (italics mine)

Like you, I've had no surgery, but at least they acknowledged the bone destruction. As for "foranimal stenosis" and "canal stenosis", I found out they are real things, having to do with the spine, I think, but nothing to do with WG that I can determine, and nothing that I have a history of or have ever heard mentioned. So someone just filled in what it sounded like to them, apparently. Or two different someones, other than who wrote the main body of the report. Maybe this is a case for changing the name to GPA.

[SpaceflightAddict]

I have a pretty good idea what happened in your case... a lot of medical professionals dictate their reports, then send them off to a transcription service to be typed up. Usually they are very good, but there are so many medical terms, that unless you have a very comprehensive (and expensive) set of medical dictionaries, sometimes things get missed. My mother did this from home for years when I was a kid, and had three shelves just for medical dictionaries. I suspect, (but please someone tell me that I am wrong) that some of these services have been outsourced overseas over the years, and that quality control has loosened in the favor of profit.

[annekat]

I have a pretty good idea what happened in your case... a lot of medical professionals dictate their reports, then send them off to a transcription service to be typed up. Usually they are very good, but there are so many medical terms, that unless you have a very comprehensive (and expensive) set of medical dictionaries, sometimes things get missed. My mother did this from home for years when I was a kid, and had three shelves just for medical dictionaries. I suspect, (but please someone tell me that I am wrong) that some of these services have been outsourced overseas over the years, and that quality control has loosened in the favor of profit. Andy, that sounds about right, and it wouldn't surprise me. If so, I'm kind of amazed that they got the name of the disease right in the middle part of the report. Also, I remember them saying it would be available the next day after the test, sounding like there wouldn't be a lot of time to send it anywhere and get it back. But then I didn't get it in the mail for several days, maybe a week. Who knows. I'll be interested in what the docs have to say about all that.

[jvilner]

Well my ophthalmologist told me that she sees a lot of changes in my eye since my last visit 3 mos ago. I seem to have the beginning of cataracts which most likely is caused by prednisone. I need to do further testing.

[annekat]

Well my ophthalmologist told me that she sees a lot of changes in my eye since my last visit 3 mos ago. I seem to have the beginning of cataracts which most likely is caused by prednisone. I need to do further testing. Sorry to hear that.... that wasn't the case with me, but I have certainly heard of that in Weggies from prednisone. I've heard the surgery isn't bad and can actually improve one's vision from how it was before. But I'd still like to avoid it. Good luck.

[vdub]

whomever was "reading" the CT scan has never seen a Wegener's patient
Sounds like they hadn't even heard of wegs, but I wonder why they didn't read the top line where it says you have wegs and maybe look it up if they didn't know what it was.

I had an appt with a VA doctor a month ago. He said "so you have diabetes".... Uh, no, I don't. Yeah, ya do your glucose is very high. No, my glucose and a1c are right on the money.... Oh, nevermind, wrong chart... Then he gets to my drug list and starts counting... "23 drugs a day, uh? that's way too many. we'll cut you down to 5. absolutely no more than 5". Uh, wrong chart again or do you not know what those diseases are that are listed on the top of the sheet? "doesn't matter, no more than 5" AND, he actually made me an appointment with a "clinical pharmacist" (whatever that is) to trim my drugs to 5. I got home and cancelled the appointment. Sheeezeee!