Lip Biopsy came back...

[mews]

So my second reading or testing of my lip biopsy came back today, the Dr was in Surgery and I got the nurse to fax it to me... This is what it said,

Lip, Lower : Chronic sialadenitis 

This is a mucosal biopsy covered by stratified squamous epithelium, with underlying connective tissue and elements of 3 muccous accessory salivary glands. These show diffuse chronic inflammation and fibrosis. The total area of the glands is approximately 5mm2 and there is one foucs of 50 or more lymphocytes in a periductal and perivascular location. The biopsy is not sufficient to give an accurate focus score, but this roughly equates to a focus score of approximately 0.8 foci per 4 mm2.  This is not itself indicative the oral component of Sjogren's.

In one sentence the biopsy is not sufficient to give an accurate score, the next they are scoring me....and I thought that score meant I had Sjogrens? Also what does chronic inflammation and fibrosis mean??

Can anybody help me with this.. I know most here have been around long enough to have the answers. I will get from the ENT, you don't have SJS... LOL

Thanks to all
Hope all are well
Mary

[shelby]

Hi Mary,

I will offer my interpretation of your report, and then invite others to correct my errors.

There is a microscopic photo of sialadenitis  in Wikipedia under the entry "Sialadenitis", and a microscopic photo of Sjogren's on Wikipedia, under the entry "Sjogren's Syndrome".  These and the associated text appear to indicate that these are different conditions. 

This report says something like:  This is a biopsy of a sample of the salivary glands of the mouth, covered by layers of surface tissue (like skin, but in the mouth, the topmost layers) with some connective tissue underneath, and parts (elements) of three salivary glands. He said the sample was 5 square millimeters in size.

For Sjogrens, I seem to recall that you need a focal score of 2, or higher.  Your report indicates a focal score of 0.8, and I think it says that the area of inflammation is located near salivary passages and also near tiny blood vessels.

Then I think the report says that the sample he looked at did not have three complete salivary glands (buds), so any result he reports will not be accurate according to the standard protocols for the test he is analyzing.  Usually these complete glands, or buds, are the sites of concentrated lymphocyte infiltration in Sjogren's, and whole glands are therefore typically used to count the lymphocytes from which to get a "focal score" to diagnosis it. 

Because he did not have the necessary three complete glands (buds) in his sample, what can he say?  He can only say what he saw on the slide.  What was that? 

So he simply says, what I see is one group of 50 or more lymphocytes in the 5 square millimeter sample. 

He converted this to 4 square millimeters, because I assume there is a standard 4 square mm reporting format for the protocol, so he then reports the same thing by saying that works out to 0.8 foci in 4 square millimeters (which equals 1 foci in 5 square millimeters - can you see that?).

Then he says one focus of 50 lymphocytes in 4 square millimeters does not meet the minimum criteria for a diagnosis of Sjogren's.

Moving on to your questions, how can they say the sample is insufficient for an accurate score, but then report a score?   

Well, medical professionals do not wish to waste effort or samples, so they don't just throw a sample away if it isn't perfect.  It might be imperfect for Sjogren's analysis, but could unexpectedly show raging cancer or something else unexpected.  It could also potentially show raging Sjogren's, even with no complete salivary buds in it, but it didn't. 

So instead of throwing the sample away he simply reported what he saw, but noted that the sample does not meet the protocol requirements for a Sjogren's tissue sample.  It is just good science to extract as much information from the tissue as he could, regardless of all protocols. So he reported a focal score of 0.8 for the imperfect sample. Does that make sense?

As for the question what are chronic inflammation and fibrosis:

I believe that "inflammation" anywhere in the body means that your white blood cells are either normally attacking undesirable tissues, or in disease are attacking desirable tissues that you need. Chronic inflammation would not a single event, it would be happening all the time.

I think when white cells attack and kill tissue, the remnants of the white cells are left behind instead of, for example, just an empty hole.  This is great if you have to heal from a cut, it patches things up nicely.  However, in a disease such as Sjogren's, your salivary glands can be killed by white cells and replaced with that fibrous tissue that does nothing - the cause of dry mouth.  I think the white-cell tissue killing and subsequent replacing process is called "fibrosis".

There may be conditions other than Sjogren's under which white cells attack salivary glands, and apparently Chronic sialadenitis is one of them. 

Notice this:  the technician and doctor had an incomplete sample, and not only reported a focal score for it, they actually went on to make a diagnosis from it! 

I suspect they did that based on the location of the infiltrating white cells which were near the salivary-flow channels, which must be typical of sialadenitis.  Also, your infiltration of the white cell lymphocytes was "diffuse" as in sialadenitis, instead of clustered around a bud, as in Sjogren's.  You apparently did have one cluster of 50 or more lymphocyte cells though -- but perhaps it wasn't centered on a gland (bud), but rather on a salivary channel or something else. 

Does this explanation make sense?  No one will hurt my feelings by correcting anything or everything I said.  The only reason I took a shot at explaining it is because I know how first-hand how incredibly confusing and frustrating trying to figure out my own medical reports has been.  I am hoping this helps.

[mews]

Hi Shelby,

Thanks for your reply, I do get it , but, I think the focal score is 1 or higher according to the Greenspan guidelines. I took this from the John Hopkins website: lip biopsy demonstrating lymphocytic aggregates of 50 or more cells in the periductal region of minor salivary glands has been judged to be the gold standard for the diagnosis of SS, so what is the difference between this and mine? I guess I will see what the Dr's say at Johns Hopkins. Not sure why it would matter where the inflammation is if you fit the profile. They nit pick it to death!!!

Hope all are well

Thanks Mary

[shelby]

Hi Mary,

I was afraid I went overboard in trying to figure out your report, however, I see you are right with me, or actually beyond me, in understanding the details of the lip biopsy report interpretation.

I looked up the Greenspan Guidelines because I had never heard of them. 

You are correct in saying that a focal score of one is considered to confirm a diagnosis of Sjogren's, however, I am still unsure if the location of lymphocytes matters according to those criteria.

Unless I am missing something here, which is possible or even likely, both Greenspan and Johns Hopkins report all results in a standard 4 square millimeter square.   While you had a focal score of one, that was in your entire 5 square millimeter sample.   When you sample result was translated into the standard "4 square-millimeter" reporting format that Greenspan used, your score was 0.8, and is less than the minimum required score of one, so you still wouldn't have Sjogrens according to the Greenspan criteria.

What interests me more, is the thing that I know the least about, which is the location of the lymphocytes on your sample.  It appears to me that they are simply not clustered around the salivary gland buds as they will presumably always be in Sjogren's.  It also appears to me, that the doctor saw not only this, but saw a clear pattern that it typical of a completely different disorder, sialadenitis.

Getting a diagnosis can be a living h*ll, and you have my support and sympathy in your current place in the process.   There is one silver lining to the cloud -- you may actually not have Sjogren's.  I am likely going to die from it, and I can't imagine that anyone would ever want this illness of almost uncontrollable pain and crushing fatigue. 

However, if you believe you do have it, you most likely want to have it diagnosed so you can be appropriately treated for it. I understand that, and also sometimes people are truly totally disabled and need SSD disability -- and they don't qualify for it because they don't have their illness correctly diagnosed.

Your attention to detail in understanding your lab results indicates to me that you are probably making more-informed-than-is-usual decisions about all of your medical options.  I have a feeling that you may make substantial progress in getting a correct diagnosis very soon because of that.  Let us know what they say if you don't mind.

[mews]

Shelby,

Just to set the record straight, I don't make it a habit of trying to get diagnosed with something I don't think I have. I didn't ask to be sick! I have all the classic symptoms and more, from dry eyes, so dry I can hardly see, nose so dry it bleeds and mouth with constant infections and rotting teeth, to brain lesions and fog and kidney and bowel dysfunction, and tons of digestive problems. I also have peripheral neuropathy, which has now caused me to walk with a cane. This has been going on for many years now and a diagnosis at this point would be nice. Getting medicine to help me with this mess would be nice. Instead I get a lot of, your blood work is normal, sorry, I don't know what's wrong with you! Finding a Dr. who can help me would be nice!

It was first the eye Dr who told me I had SJS after she ran her tests, then the rheumatologist said I had it, but the blood work came up sero negative, which I understand is not unusual for SJS patients. Then the ENT before he did the lip biopsy.

So maybe just maybe if there was enough cells to do a biopsy, the results would be different. I think that's something you and I won't know for sure.
By the way what exactly is chronic sialadenitis? Every web site seems to have a different definition for it, kinda because it means "were really not sure whats going on here"!  

[Carolina]

I think the problem is that lots of things that involve the symptoms that drive us crazy, don't fall into any of the known categories of diagnoses.

So doctors don't KNOW what we have.

Does that mean we don't have anything?

NO

NO
NO NO NO NO

It means that what we have doesn't fall into the clever little boxes of what doctors know are the hallmarks of a particular disease.

Relax.

Take care of yourself.

We're in this for the long haul.

Keep us posted.

Kisses

Elaine

[mews]

Thanks Carolina,

One question what does the p stand for next to the pSJS?

And now I'm relaxing... LOL

kisses back Mary

[navydad]

p is primary,,,,,,, so what does mine mean,, chronic inflamtion with fibrosis,, ?

[Patze]

Hi Mary,

I'm still trying to figure out what "some infiltration" means (had inflammation for a long time by then), no numbers, no nothing other than it's concerted negative (not enough infiltrates I guess).

Hugs to you lady and I hope that you'll start to feel better soon.

Take care -

Patze

[mews]

Hey navydad,

That's what mine says lol.. Man you could go nuts with this stuff!  Did you all get put on meds for your symptoms though? That's what I'm hoping for now...

Feel better all!!!!

Mary

[mews]

Kamie, I just love you too pieces!!!!

Thanks for the constant support!

Feel well...
Mary