Unidentified Pain

[drz]

Hope you get results quickly and some good news about it!

[Alysia]

good luck Katrina in the surgery. I am sending you my praying

[mishb]

Good luck Katrina,
I hope it all goes well and you have a pain free recovery

[HopeinTN]

Thanks all! I'm sure it will be fine. I'll post again once I'm back from the hospital and they say more ike 3-5 days.

[HopeinTN]

I had the surgery on Tuesday and came home Saturday night. Still waiting on the pathology report from the lymph nodes and golf ball size mass. The mass had attached itself to 3 ribs so they had to cut all 3 ribs and re-construct them. PAINFUL!

I’ll update soon but in too much pain to do so now. Thanks all!

[annekat]

Wow. That's a lot to go through. Thanks for the update, I hope the pain starts to diminish soon, and here's wishing for the best possible results from the tests. Good you got rid of that thing, in any case, I guess...

[Debbie C]

OH MY GOSH !!!!!! I know you must be in pain I hope the report comes back good and a least you got rid of that mass you had. Now maybe they will get you off of ctx and give you something else. My prayers are with you that you start to feel better soon and the test come back good. Get some rest

[Alysia]

Hi Katrina,
thanks God you are safe home and after all. It sound SO tough. I hope that from now on things will only get better. I am sending you my praying and gentle hug

[Rose]

Hi Katrina

I have just read through this thread from the beginning....what a terrible 4 months you have had to endure both physically and psychologically. Soon you will have some relief as I think the not knowing is sometimes worse. I wish you the best possible outcome for the biopsies. At least that is now over and like Alysia, I hope things will only get better from now on.

Rose

[HopeinTN]

Great news, No Malignancy! The lymph nodes contained Granulomas (this is part of the Wegener’s) and shows that my disease may be active. I will meet with my Rheumatologist 11/22 to determine next steps on this. The thoracic surgeon is confident that the entire mass was removed completely, along with the surrounding tissue and bone from 3 ribs (which have been re-sectioned with some kind of mesh), but we will discuss more at my next appointment. By far the most pain I have endured.

As far as the tumor that was aggressively growing in the pleura space and on to my ribs, it is not malignant but it is, get this, another rare tumor called a Desmoid Tumor which is also called Aggressive Fibromatosis. I have not yet researched this but was told they are typically not Malignant but in some cases, damage can be done to nearby structures causing organ dysfunction. The treatment for these tumors would be to watch it’s growth rate and surgical removal which is sometimes followed by radiation and chemotherapy. A lot of this I will discuss on my 11/22 appointment. Great news is that thw rumor was removed, and my lung was left untouched!

Honestly, I’m still not clear on most of this but will have much more info after we meet with the surgical team again at the end of the month. My surgeon is very good and also very excited to run my case by a team of others to discuss and has made me an appointment with an oncologist (this is hard to understand).

Forgive me if this is scattered but I have been staying out of it and drugged up as this pain is nothing I’ve ever experienced before.

Notes from the surgery:

• Surgery started at 11:00 am lasted 5 1/2 hours instead of 3 as originally planned
• The Docs removed a golf ball size mass from the right pleura space. The mass was attached to 3 ribs and had to remove this area of all 3 ribs.
• They were forced to make 2 incision points instead of just 1.
• First incision point through throat to get to the Lymph nodes, Second incision point in the posterior distal region of the back to get to the lung/rib area since they could not get to it from the first.
• Entire mass was removed.
• Recovery time and pain may be a bit longer/more strenuous due to losing portions of 3 rib bones and 2 incisions, affecting both muscles and tissues on both sides of the body that are used even in simple breathing.
• Stayed at Vandy for 5 days.

Thanks for the well wishes and I will have more on to report at the end of the month on My Wegener's status from the pulmonologist and Rheumatologist as well as the status of this Desmoid Tumor/Aggressive Fibromatosis from the Oncologist. Hopefully by them the pain will diminish and I will be getting up and about.