MRI - Why is one odd?, and other interesting case?

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Catherine

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Jan 30, 2012
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Hi Everyone

Received pathology request form and copies of two mri in the mail today.

GI has requested MCP, TGN, ESR, CRP.

I believe MCP, TGN are query dose of aza.

Sarah still has not symptoms and remains on 30mg pred.

Why is are GI and her second opinion from the Alfred Hospital saying this MRI result is "odd". GI is reviewing with the radiologist and will then discuss again with the Alfred GI.

MRI of 8th November 2012

Clinical Notes

Findings: There is a series of thick-walled small bowel loops in the central lower pelvis. The bowel wall thickening is not as pronounced as it was on the previous MRI dated January 30, 2012. The terminal ileum is relatively spared, with this process involving small bowel loops just proximal to this.
The thickened small bowel is T2 isointense. demonstrating relatively homogenous gradual progressive enhancement. The mesenteric fat is indurated and contracted. In amongst this inflamed contracted mesenteric tissue, there is the suggestion of multiple small fistulous tracts.
Previously, affected small bowel loops demonstrated a greater of bowel wall thickening but less in the way of mesenteric contraction and no definite fistulae were present.
Proximally, small bowel loops are not distended,weighting against a functionally significant obstruction.
No colonic abnormality shown.
Uterus and ovaries are normal. There is no significant free fluid.

Comment: There is evidence of ongoing inflammatory change involving distal ileal loops, relatively sparing the 5-10 of ileum.
In the interval, there has been progressive contraction of the inflamed mesentery with what appear to be a small fistulae.


MRI - 30 January 2012 - Does any why they are saying this is a interesting case?

Report: I presume the clinical notes represent a typographical error and the suspected pathology is Crohn disease rather than coeliac disease.

Confirmed circumfernetial wall thickening and abnormal enhancement of the pelvic ileal bowel loops extending into and involving the terminal ileum. This abnormality corresponds to the bowel wall thickening seen on recent ultrasound and is certainly consistent with inflammatory bowel disease (Crohn disease).

No other specific small bowel abnormality is detected. The jejumum and more proximal ileum are normal. There is no dilation of these bowel loops to indicate a mechanical obstruction. I do note a small amount of free intraperitioneal fluid especially in the pelvis adjacent to the thickened bowel loops.

Conclusion: Definite circumferential wall thickening and abnormal enhancement involving pelvic ileal loops extending up to and involving the terminal ileum. Appearances are certainly consistent with inflammatory bowel disease. Minor free fluid in the pelvis.

No other obvious complication. There is certainlyno evidence to suggest mechanical obstruction. Clincial follow up in this interesting case would be appreciated.

I hate waiting. The GI is saying that Sarah disease is both better and worse. Any help understanding these reports would be much appreciated.
 
Hi Catherine,
Reading over the reports I would not get all caught up with the comment of interesting case. Sometimes radiologists make these comments especially as MRE is a newer technique and if he has not done a lot of them then he finds it to be an interesting case.
From reading over the reports it sounds like some areas have shown some small improvement but others have not. She probably needs a different treatment or something added. What is she currently on? (you may have told us but I cant remember at the moment and am running out the door).
 
Thanks Kim

Sarah is currently on aza 100mg.

GI would like her on remicade but she is unlikely to get Australian Medicare approval as Sarah only has a PDCAI index of 7.5 and you need an index of 30.
 
I wish I could offer you some advice, Catharine! The wondering and worrying and waiting is so hard! :(

But I am sorry that insurance has to play into this at all... a decision on treatment shouldn't have to factor in the cost to an insurance company! :ymad:
 
Yes, while we don't pay for appointments, 2nd opinions or tests, etc. we do have 'waits', ie I just took S to the U.S. and paid for an MRE because I didn't want to wait but now have to wait for our GI's radiologist to review! :ybatty:

And, yes, while I haven't had to deal with remicade-related insurance issues yet so don't know what they are, I know that there ARE issues... My insurance didn't cover Stephen's EN (because it's apparently only a nutritional supplement!) but, luckily, a regional medical agency does... :ywow:

My friend (whose daughter has crohns) and I have often said there's a viable business opportunity out there for someone to navigate the medical and insurance systems for patients!!!
 
We paid privately for both mri as they not covered but only paid $365 each. We go to a private gi at $120 visit and get $60 approx back. In April we passed the safety net now all but $12 back on 31 december the safety net reset.

We also have private insurance - so only had to paid $400 for colonscopy & other which wad done at the same.
 
I think our systems differ a bit when it comes to 'private'. Private is not legal in Ontario and most of Canada (I think some provinces allow some private services). So, we cannot pay to see a private GI nor pay to have tests done at a private clinic. The option just isn't there for us.

If you live near the border (we are relatively close), we can drive to the U.S. and have tests done (no reimbursement). I don't know of anyone who's gone to see a U.S. doctor privately though.

We have public and private insurance though... our public (govt) insurance covers the costs of all medical visits and tests (there are some minor exceptions) and covers the cost of medication whilst IN the hospital. However, medication is NOT covered by the 'usual' public insurance once you leave the hospital (some exceptions for seniors, etc.). Private insurance is what covers the cost for medications - so, like every other insurance, it must be approved. Then there are 'specialty' programs (I guess...) - the regional agency that covers Stephen's formula and they send a nurse once a month, this is also the agency that would teach him how to give himself injections, etc. and there's another provincial program that will apparently cover the cost of ANY prescription (including the formula) if your private insurance will not cover it (however, there is a deductible based on your household income).

So, I guess there are a few options/levels of support but, I imagine it's not easy to navigate through them!
 
Ok system is where between USA & Canadian systems.

Hospital treatment in public hospital or er is free. There some gp who bulk bill they are free. There some specialist who work in the public system, I think you referred to them through a public hospital stay.

When gp refers you to specialist they are usually private specialist.

Medicine are subsidiary? and with maximum cost of $36.50 per script.

There is also private hospital system, I have private insurance for this and we claimed on this insurance for the colonscopy.
 
I imagine there's no perfect system out there... :( There's alot of opposition to having a two-tier system here (ie public for everyone and private for those who can pay) but, to my mind, approving/legalizing some private services would actually free up the public resources and all would benefit. But, the opposition believes that those who can pay will end up with quicker care than someone who can't pay. There's also concern that overall resources (ie skilled doctors, etc.) would move to private because they could earn more?? (not sure if this is valid but ???)
 
Listening to your emails here Tess and Catherine is scaring me. You know the USA is now going to be going to this Obamacare in January and I am not sure what we will be looking at but it is frightening.
 
Kimmidwife the current American system frights me.

Tess most Australia specialists actually work in both systems.

Most emergency care in Australia would be through the public system. If you have private insurance you get quicker access to elective surgery.

The MRI is not covered by either systems.

Our costs charged to the private insurers seem cheap compare to what is charged to the American insurers.
 
I am with you January scares me.
Paying does not to a point.
excessive wait for good care and tests does.
I have seen those in the US who get "Free" care( ie medicaid or medicare) for whatever reason - condition or financial and the hoops required for anything above a GP is ridiculous not to mention forget going for a second opinion out of state since all are state run.
IF we all have to go to that- I am very afraid.
 
Much I love our insurance discussion. There are ready enough insurance in my live at work. Not health insurance.

Does Sarah latest MRI report, show there is on going inflammatory and a small fistulea.

Does this mean that current treatment plan, is not working?

What other options are there if the GI can't get remicade approval?
 
Catherine i have absolutely no idea about the MRI report.... just wanted to let you know i am thinking of you and hope everything is ok....:hug:
 
Hey Catherine,

I agree with Kim. Some improvement and some not.

I don't believe the Imuran is working hun, if it was there should be an overall improvement not new features and continued thickening of previously affected bowel loops.

I hear what you are saying about the Remicade and PCDAI but I wouldn't dismiss outright due to her still falling under the paediatric guidelines. They still may be able to swing something.

If fistulae are indeed becoming a feature then something that may be tossed around is surgery.

Dusty. xxx
 
Oh man Catherine, I so hear you on that front...:hug:...Waiting and not knowing is the pits! :( I hate it! :voodoo:

Dusty. xxx
 
:voodoo::voodoo: WAITING!:voodoo::voodoo:

I don't know if this will help but if insurance denies the Remicade then see if you can apply to the program from the drug company where they subsidize it. I have the name and internet addresss and phone numbers here somewhere just trying to get the kids off to school so if you need it just ask and I will send it.
 
Thinking of you and Sarah!!! I know how frustrating this is for you!! :ghug:
 
Next question does having a fistula in itself mean Sarah's crohn is no longer mild to moderate?
 
Update from GI by text message.

"Waiting metabolite results but ESR is normal! Still debating MRI, will call whan a decision is made."
 
Hey Catherine,

A fistula is considered a complication of chronic inflammation as are other complications of Crohn's. If and when these complications develop they usually only manifest in severe disease.

Thinking of you hun...:hug:

Dusty. xxx
 
Hi Guys

The GI has text me twice.

Sarah finishes her 11 year exams tomorrow do you think I would be ok to text asking about taper for pred. Or should I ring the office.
 
Catherine i would ring the office first and if they don't let you speak with him then i would text him....good luck
 
Hope the exams went well! Now that they are out of the way, it wouldn't do any harm to text. Have they mentioned the MRI yet?
 
I think it depends on two things Catherine...

What sort of relationship do you have with the GI? and why did he text you?

What were his instructions when he prescribed it?

So good to hear that Sarah's exams are all but over! :):):)

Dusty. xxx
 
The pred was started by the er doctor. A week later we saw gi because the faecal cal result a mri was ordered as she believed Sarah had active disease while appearing to be in clinical remission. As she was already on pred, and it was exam period a taper would not began to after mri results were in.

The mobile number has never been discussed. 10 days ago i rang the gi office to advice that mri had been done, the gi rang back to discuss mri results that were not as expect. She advised she was getting a second opinion from alfred and was trying to find a way to get her on remicade.

I received a test message that night to advise her second opinion also believed the mri was odd and need to be discussed with radiologist and then again with the second opinion.

I also received a second text last week that they were still discussing mri but fsr was normal and were still awaiting on the test relating to the aza levels and she would contact me when a decision has been made.

So on thursday sarah will have been on pred for 28 days with no plan to taper.
 
Ah okay. In that case I would ring the office and see if the Aza results are in and if so ask that the GI contact you.

Good luck hun...:hug:

Dusty. xxx
 
Heard from the GI this morning. There is a small area of small bowel affected about 30 cm. The area of inflammation is much reduced, the colon and join between small and large bowel area clear. The radiologist can't be sure a fistula is present, it could be something else.

CRP 2 FSR 13, these are well within normal arrange.

The general opinion is that we sit tight but get a surgical opionion.

Starting pred taper and 5 mg per week.

Also said Sarah is an interest case. Note for future reference it is not good to be consider an interesting case.

Well at least she is taping of pred.

On a side note she going to look into find a trial for Sarah that includes free MRI. Something in the way of use of supplements with IBD. :thumleft::thumleft:

As we can't afford to use MRI for monitoring of Sarah's disease.:thumbdown:
 
Thanks for the update Catherine! :)

I hope the taper is trouble free and you get into a trial! Sounds fab! :):):)

I like the sound of a surgical consult too just so you have another option if need be, plus based on what you told you have time to research it. :wink:

Dusty. xxx
 
The surgical consult is to see whether they need to go in and see the outside of bowel as the mri is unclear.

There was also mention of old fashion test which may show more.

After we see the surgeon, we will go back to the GI to discuss our options.
 
Ah okay, so are did they say laparoscope or laparotomy or they didn't specify?

I wonder if the older test a small bowel follow through? So Sarah had an MRI not an MRE?

Sorry for all the questions Catherine. :redface:

Dusty. xxx
 
Glad she is tapering well. Hope she is able to get into the supplement trial as free MRI sounds great!
 
I think she said laparoscopic but we are just getting on opinion. She said a surgeon will a better position to understand the mri and what other tests may help.

The Small bowel follow through sounds close, but she you swallows barium and then a camera takes photos.

Sarah has an MRI with constant.

The GI is now hoping that the AZA test comes back saying the levels are not higher enough and we can just increase aza dose.

The second opinion was the director of IBD at the Alfred Hospital. 5 GI have now look at Sarah's MRI.
 
Catherine,
That test with the barium and x rays sounds like they are talking about a floroscope. I understand it is not that much more accurate then an MRE but does use radiation since it is a type of X-ray. When they did her MRI did they have her drink the contrast or just give it IV? The test where you drink the contrast is more accurate for IBD and that is the one they refer to as MRE vs MRI
 
That's good that the area of inflammation is reduced. Good luck with the pred taper! I hope they manage to get Sarah into a study that includes MRI's, would be great to be able to keep an eye on her without having to pay! Have to say, her being an interesting case doesn't seem to be getting you much further forward ;)
 
My understanding from gi, interest case means that crohn is not following the normal pattern.

Sarah is still in clinic remission she has no symptoms part from episode of severe pain four weeks ago.

Her feacal calprotectin number went up but its only to 608.

Her MRI is both better and worse.

But there are reasons to be happy with these results. Her colon is clear. And so is the join.:soledance:
 
Received the referral for the surgeon today.

It confirm that 30cm of bowel is involved and there is significant less inflammation and possibility of a phlegmom. The radiologist was unsure about the presence of fisulas, suggesting the appearance could also be fissures or blood vessels.

It also says she wondered whether a lapraroscopy may be the best way of finding out exactly what going on the area. Also says a barium study would be difficult to interpret with the contraction that has occurred.

Of to look up the new words.
 
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Hope the appt goes well! A laparoscopy would be good - I believe it's a really tiny hole they make and it would give them a good picture of what's happening.
 
Sascot is right. it is usually two or three tiny holes and they fill the area up with air to be able to get a clearer pictures. the recovery is usually quite fast.
 
Hey Catherine,

Good luck with the consult! :goodluck:

One of Matt's abscesses was a phlegmon.

How are you going?

Dusty. xxx
 
Sarah tapering to 20mg pred today. She seems fine. Stomach was a little gasy earlier in the week and it was enough to stop her training. School fininshes on Friday.

We are moving forward slowly.
 
Hope the taper continues to go well.
20 mg was always the sweet spot once we would go below if things weren't under control then all @&$ would soon follow.
Good luck
 

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