Latest CT Scan Results

[windchime]

Gosh, where to begin. Saw the Mayo Pulmonologist today. He doesn't think I have Wegener's (my lungs are perfectly clear.) He thinks I have another very rare disease called Fibrosing Mediastinitis, in my case probably caused by Histoplasmosis. There is an idiopathic FM also.

FM, in my case, is presenting as a 1.5" x 1.2" calcified mass in the mediastinum more to the right side.It's encroaching on the right bronch and is what has most likely caused the collapse of the middle and lower right lobes. I'm just hoping that it hasn't gotten to the superior vena cava or one of the other heart vessels. *sigh*

Treatment is squirrely and I'll know more after he talks to the thoracic surgeons, however, it could be that I'll end up having the two lobes removed to help me breath better and get off oxygen. At least he says that's what will happen if they are removed.

If the two lobes can't be reinflated it's best to remove them as they can get infected. In fact the fever I've had could be that.

Here are a couple of links if anyone is interested in learning about it. Only a couple of hundred people in the US have this fine disease. How could I get so lucky. From one frying pan to another.

Fibrosing Mediastinitis | Report

http://www.fibrosing-mediastinitis.c...011%20copy.pdf

[Dirty Don]

My best to you Cindy, hang tough & keep us informed too.

[pberggren1]

I don't know what that first sentence means, but is he saying outright that you never had Wegs? What are this docs credentials? I don't know what this means? Sorry, I'm just scared for you.

[windchime]

They (the pulm doc consulted with the wegs expert doc at the clinic) aren't saying it isn't wegs, but that it hasn't behaved as wegs since it hasn't presented as a typical wegs case through the years.

I'm scared at this point too as it probably means surgery one way or the other.

Thanks for the support.

[pberggren1]

We are all here for you sweetie. Please keep us updated.

[me2]

Thanks for the links Cindy. I had never heard of that condition before. Yes, talk about a puzzeler. I know its not the same but I have had very rare complications of my Central Nervous System from WG-
and I'm still here to complain about it. A day at a time. Like Phil says, keep us posted. I'll be sending you good thoughts.

[windchime]

I feel the warm fuzzies and love so thank you for that. I will keep you all posted.

Me2 I had never heard of it before either, but it does form granulomas. So in some small way it could be related to wegs (distant cousin.) It is thought to be an autoimmune response to the histoplasmosis fungus. I just read something about CNS and wegs. It escapes me now, but I remember the CNS part.

Thanks again for your kind thoughts.

[Alysia]

Dear Cindy,
I don't know if this means a better or worse prognosis
I just think that if he changed the dx, there is a need for second opinion, especially if he will suggest a surgery.
are you also at the vasculitis group ? https://www.facebook.com/groups/332547823431093/
I think that Jim have cns, so maybe he can help more.
if there are granulomas, maybe the treatment should be the same anyway ? I am saying it because my gastro doc told me that granulomas of WG and of Crohn looks the same and the treatment also can be the same. maybe it is like that with all granulomas ??? I wish I could tell....
please update us. and just continue to write and vent. not an easy time to go through...
I am sending to you lots of love and hugs and prayers

[windchime]

From the extensive reading I've done today, I could have wegs and FM. The prognosis for FM is worse than for wegs as they usually can't remove the calcified lymph nodes. They can only stent whatever blood vessel(s) or bronchs the "stuff" is pressing against. From what he said it's grown about an inch in the last 9 years.

As far as a second opinion there are so few cases that there are also few "specialist" for this disease. I think I read there is one at Mayo in Mn. There are only 200-300 cases in the US. When he showed it to me on the CT the light bulb came on and so much made sense.

I will see what he has to say next week after talking to the other docs, but something interventional will need to be done.

[Debbie C]

Cindy ,didn't they do a biopsy of your lungs before ? I read the article but it all looked greek to me,couldn't understand it but I did see where the prognosis is good,so that's a good thing. When are they going to try to inflate your lungs ? I thought they would have put u in the hosp. and got that done ! Sorry to hear the news but for sure let us know what is happening. Take care