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phantom parts

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

After 10 days, I finally got results on a follow-up ct.  It took so long because the report had to be ammended to include the impression of a 1.5 cm splenule (previously reported)...the REASON for the f/u ct, in the first place...AND duly noted in my records as being one of two purposes for chest, abd and pelvis scans.  The other purpose was to follow a "larger than normal mediastinal lymph node (0.9cm)", as reported on my (chest) December scans. 

I have to say, my confidence in medicine is decreasing with each passing experience. Undecided 

At any rate, when I finally got the copy of the ammended report I was a little freaked out that the already larger than normal node has grown to 1.3cm (in 3 months).  The report says "minimally increased in size" and "likely is reactive" whatever THAT means.  Doesn't sound so minimal to me!  Not sure what's up with that.  My doctor doesn't seem too worried tho.

As for the splenule, no change.  Good news there! 

I can't help but question though, being that I've not had my appendix since the age of 11, and I lost my uterus during a total hysterectomy when I was 38, how is it that both, my appendix and uterus are reported to be present and unremarkable?  Just curious. 

The bright side here would be that, this radiologist didn't comment on my prostate, as was the case with my May, 2013 ct.  Gotta give credit where credit is due! Yep!  My confidence is shakey at best.

Lastly, there is a 6.4cm anterior abdominal dehiscence, as stated on the Abdominal Findings.  I think that's a hernia, of sorts, but I can't be certain.  I think they are referring to what I've been calling a buldge, however my buldge is much larger than 6.4cm!  So, I'll have to have doc explain that when I go back in May.

Guess I'll just hurry up and wait the 3 months till scan time comes back around.  Speaking of which...my urologist want's my next scan to be with contrast.  My onc said absolutely not.  What's a patient to do??  Common sense says listen to my urologist, he's a kidney transplant specialist, he would know, right?!  One the other hand, that's one way to drum up business, I suppose.

All in all, a good report.  I am so thankful!

 

 

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Twinnie, 

That's great news!  at least you phantom parts are listed as unremarkable. How worrying would it be if there was an issue with them. It does make me wonder about some of these Radiologists, mine had problems identifying what was there, yours are indentifying parts that aren't. Glad the prostate is working well though must be a huge relief!

As you say though nothing worrying going on, so good deal!

All the best:)

 

Djinnie xx

 

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thanks, Djinnie!  And yes, glad to know my prostate is in good working condition.

Hope you are doing as good as can be!  I think of you daily.

 

xoxoxo

icemantoo's picture
icemantoo
Posts: 1560
Joined: Jan 2010

Sindy,

 

 

What a relief. No Prostate means no prostate exam. Boy do you ladies have it easy.

 

 

Icemantoo

foxhd's picture
foxhd
Posts: 1923
Joined: Oct 2011

is when a surgical wound or incision doesn't knit and opens up. This is the kind of thing we advise newbies about when they express a desire to do too much too soon.

Jojo61's picture
Jojo61
Posts: 384
Joined: Oct 2013

Sindy - just like some doctors leave a sponge or scalpal in the surgical area of the patient by accident, perhaps they left the uterus in there by accident! Even though it is humorous that your prostate is fine, it is a bit disconcerting that they continue to make these errors.

At least you got a good report!

Hugs

Jojo

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thankfully, I can say with 100% certainty that I do not have a uterus. 

The question is, if it's not my uterus and appendix they see (and it's not), then what the hell is it?  Food for thought.  I think the radiologist has some splainin' to do.  I wonder if a patient can speak directly to the radiologist?  Perhaps I'll call them.  Can't hurt.  Maybe they'll make fewer errors in the future if I call them out each time.  I think that's where the term "the squeaky wheel gets the oil" comes from.  It's time for me to squeak, dadgumit!! 

Hope all is well with you, Jojo!

 

xoxo

Sindy

GSRon's picture
GSRon
Posts: 1261
Joined: Jan 2013

Dear Sindy... what a mess..!  You have gone through a lot..!  You are a fighter indeed..!!  OK, I suggest you get copies of those scans and look at them yourself.  Besides you should have copies of them anyway.   Put that last scan in to your puter and take a look.  I was amazed at what I could point out on my own...  And yes someone has a lot of 'splainin to do..!!

Hang in there..!!!

Ron

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Between 2003-2010, I had 7 different surgeries to repair hernias (of various types).  Always multiple repairs each procedure.  So, I know better than the average newbie, the importance of taking it easy and no heavy lifting. 

I am 5' 2, with a very short torso, yet carried big twin babies to full term, gaining 70lbs (delivered two days prior to due date) and unknowingly doing irrepairable damage to my innards.

I have more than my fair share of mesh inside me.  I also am prone to adhesions.  My hysterectomy was the result of PAD (Pelvic Adhesive Disease).  My operative report from my nephrectomy last May, said adhesions were removed from my liver and colon...I wasn't the least bit surprised.  Each hernia repair is more and more difficult due to the degree of mesh already in me and so little innards with which to attach new mesh to.  My last repair required 11 tiny incisions all over my belly, and anchors were used.  In fact, my surgeon teamed up with two of her colleagues to come up with a plan.   I spent two nights in hospital and was down a solid 8 weeks.  I couldn't walk upright for roughly 10 weeks.  The mother of all recoveries!!

It's because of my history, I fear I won't find a surgeon willing to repair my dehiscence.  In May, I will see the Dr that did my last two repairs (she also took out my gallbladder) but she probably won't touch me with a ten foot pole! 

And why is it fox, that the dehiscence is to the right of my neph scar?  If it is the result of the surgical wound failing to knit and thereby opening up, wouldn't the bulge be just beneath where the surgical wound was, the scar?  And why the fancy name when it sounds no different than an incisional hernia?  I'm sure my doc will explain it to me.  Google hasn't been much help. 

Thank God I didn't have tripletts, they'd have killed me!

Srashedb
Posts: 193
Joined: Dec 2013

Sindy:

my advice to you is to get your scans and have them read by another radiologist who might be more competent.

Remember when you thought the tech looked strange while taking them? How can any trained radiologist not know if your uterus was there or not???

just my 2 cents.

by the way, your surgical history is quite impressive!!!! 5'2" and you went full term with twins??? Very impressive!

Sarah

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

fox, I could use a pizza and beer flush.  I'll have that regardless of whether or not I have contrast but, maybe I'll suggest 1/2 dose of dye. 

Todd, my creatine, as of last November, was 1.01.  So, it sounds good to me.  That's well under 1.5.

Sarah, I'm seeing my general surgeon in May, to discuss repairing my post surgical bulge.  She has my current ct and knows my tummy pretty well so it'll be interesting to see what she comes up with.  Hopefully, she will have done her homework and conferred with her colleagues and have a plan of action when I see her.  I guess my neck repair will have to wait...again.  And yes, my babies were full term, weighing in at 5.2 and 5.14 and each being almost 20 inches long.  That's a lot of baby for a short torso!!  But they were worth everybit of the havock they wracked on my body!!  No question.

Srashedb
Posts: 193
Joined: Dec 2013

Sindy:

that's that you are having your scans reread; being 5'0" myself, my admiration for your full term delivery of 5+!pounds grows.

mine were c-sections and yes, worth all the toll on my body!

As I write, my nephew's wife just delivered twin girls by c-section 10 weeks early; one baby was in distress. So, they are now born and waiting to hear more.

Sarah

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

If they ask you to turn your head and cough it might be time to leave....

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Good advice, Gordon, I'll be sure to run!!

todd121
Posts: 593
Joined: Dec 2012

My oncologist uses a creatinine of 1.5 as the cutoff for contrast. He won't allow contrast unless my kidney function test has a creatinine less than 1.5, due to concerns for kidney damage. What's your creatinine? Is that the reason your oncologist says no way? You would think your urologist would be as concerned...

Todd

foxhd's picture
foxhd
Posts: 1923
Joined: Oct 2011

always about 1.0. I get a half dose of contrast.

Then I flush it out with pizza and beer!

GSRon's picture
GSRon
Posts: 1261
Joined: Jan 2013

I may get to try the "Fox Flush" next week...    Heck, I may do a pre-test today...!!  Scans on the 11th...

Ron

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Ron, I think a fox flush before and after scans is a good idea!  Good luck with your scans next week!!

Jan4you's picture
Jan4you
Posts: 194
Joined: Oct 2013

First of all, I am sorry for all you have and are going through..geez louize!

Congrats on carrying twins @ 5'2.. I feel for you after having 3 10 pound plus babies at 5 feet, but at least years apart!! LOL

Now you must demand that the radiologist do an amendment. Better yet, who ever ordered the scans should do it for you. Coming from another doctor may make more of an impression.

Initially, both my MRA and CT were totally wrong even in the same sentence he wrote, Right kidney was unremarkable and in the next sentence described the tumor. ONLY it was the LEFT kidney!!

So now I am very distrustful. My friend in Med Records told me it is not uncommon as they read hundreds of scans a day.. ah NO, that is no excuse in my book. My Urologist was so peturbed that he himself spoke to them and have each revise their reports.

Again, have the doc who ordered the scan to get this revised and always get your own copy. It may take a couple of days to prepare the written report, but its your record, your health and peace of mind.

I'll be thinking of you. You are so sweet and have a great attitude toward better health.

Warmly, Jan

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thank you, Jan! 

Funny you should mention it, but, this IS the AMMENDED report.  How unsettling is that, I ask you?!  It's frustrating for sure.  My doctor told me my next scans would be somewhere else.  Hopefully, I'll have better luck.  I understand these radiologists read a bajillion reports but they get paid a bijillion bucks to do it.  It's so hard to find good help these days.  What good are all these tests if the doctors who interpret them aren't worth a crap? 

Good thing you got your's straightened out prior to surgery.  Could you imagine the horror of having a perfectly healthy kidney removed only to find out the cancerous one was left behind?  Scary!!

And yes, I couldn't agree more...always get copy of reports.  So important!

Hope all is well with you.

xoxo

rae_rae's picture
rae_rae
Posts: 267
Joined: Oct 2010

My last CT was a month ago, and it was noted that I also had a uterus. I had a partial hysterectomy in 2009. I had a pelvic and trans vaginal ultrasound as a follow up to determine why I suddenly had a uterus. The pelvic also confirmed a uterus, but the TV ultrasound showed it to be a large nabothian cyst on my cervix. It is a little unsettling to be told you have an organ you had removed. All I could think was that it was a new tumor. I hope your phantom uterus is resolved soon!

 

 

 

 

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi Rae Rae,

Until I read your post, I hadn't considered that what the radiologist is calling my uterus and appendix could actually be tumors of some sort.  Honestly, I just figured the error occurred during dictation.  My report was originally ammended because the radiologist failed to note on the 1.5cm splenule that was noted on a previous ct back in December.  I actually never saw the report until after it had been ammended, I can only assume the original report had the same findings tho. 

I think I'll call the radiology department this morning to see if they can clear things up.  I hate to sound like a psycho patient but if I say nothing and it turns out to be something, then I can only blame myself.

Jack, I get that these tests are performed and read by humans and certainly everybody makes mistakes, but, when 3 out of 4 ct's mention phantom parts, one of them being a prostate...in a woman...there's a problem.  I think I'll take my docs advice and go somewhere else for my future scans.

I hope your left kidney cyst remains unchanged.  One thing that has never been mentioned in any of my scans, is my left kidney.  One would think a lone kidney would be closely looked at, but that has not been the case with me. 

Skagway Jack's picture
Skagway Jack
Posts: 75
Joined: Oct 2013

I cant speak of phantom parts, however waning confidence I understand.  My CT in February revealed a small cyst on my remaining kidney.   Somehow this was missed in September, when they were too busy looking at my 7cm tumor on my right kidney. It seems that it would be logical to take a close look at both kdneys, but apparently that didnt happen.  There was no change in size of the cyst in the left kidney between September and February.  It just worries me that if they missed the cyst on the other kidney what else might they have missed?  We have better technology but it is still applied by humans who are prone to error....they dont call it practicing medicine for nothing.

 

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