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ANCA GPA with mastoidectomy. Can infection be there again?
I began in 02/24 with ear issues, no pain or fever above 100.4, but pressure and infection. Other symptoms low grade intermittent fever, malaise, and lab work "out of whack". Went to PCP, 2 ENTs, and sent to surgeon for possible Cranial Cerebrospinal Fluid Leak. Surgery 07/24 behind L ear to repair leak (none actually found, but skull reinforced with brain cement) however purulent mastoiditis found and mastoidectomy completed. Still no relief. Began having trouble breathing in 09/24, saw Pulmonologist, and had PET scan and biopsy. Diagnosed with "Wet Lungs". Third trip to ER in 2024 and now had kidney involvement. Team led by Nephrologist believed it to be ANCA Vasculitis and had kidney biopsy for confirmation. It was ANCA GPA PR3 Vasculitis. After Solumedrol (steroids) via IV x3 days and Rituxamab Infusion 11/13/24, released on 11/15. Back to ER via ambulance 11/19/24 with major flare. Pulmonary Alveolar Hemorrhage and Kidney Failure. ICU for a week for 3 more days Solumedrol, 4 units of blood, 4 plasmapharesis (PLEX), and Cytoxan Infusion on 11/20/24. Stepdown unit for another week for 3 more PLEX and another Rituxamab Infusion on 11/27/24. Released 12/3/24. I have seen all doctors for followups and rec'd more Rituxamab Infusions 05/29/25 and 06/12/25. Concerned because L ear has major pressure at times. Some R ear involvement now also. Wondering if infection could be in the mastoid "area" again. No fever but pressure is very intense at times, assume because of Eustachian Tube blockage.
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I'm curious if you had past Covid infection?
First of all let me say you're the only person that has experienced the same as me.
Long story short....numerous tubes from baby to teens. Then started getting benign tumors in R mastoid called Choleatomas. Last one was in 2005 when I was diagnosed with a rather large one that had eaten through the BBB, blood to brain barrier and had to have emergency surgery.
Had skin removed to close area after removal of tumor and R radical mastoiectomy, that made an HUGE difference in no more infections. However, unrealized that there was a pin size hole that would allow me to develop viral meningitis X 4.
Last one was 2014.
Also long COVID pr with multiple organs affected, mainly neurological.
My previous diagnosis with neuropsychologist was post COVID/meningitis amnesiac encephalopathy. Basically pretty drastic neurological damage due to "brain injury ".
I've since last Covid in 2022 to having numerous sets of ear tubes again and having same issues with pressure, sharp pain deep in ears, yes now both ears 🤯 and thinking how can this happen again???? I'm 55 years old!!!!
Didn't mean to give my life story or take anything away from what you're experiencing. Honestly, I'm just excited (doesn't seem to be the best word), to chat with someone with same experience.
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3 ReactionsHi Cheryl, So sorry for all you have been through. I too had ear infections as a child. I am 65 now, 10 years your senior, and yes, I had COVID 2 times confirmed - once very mild, and once much more severe. I also had pretty bad reactions to the Booster shot. And I am glad to have someone to chat with also.
I have been fortunate not to have had meningitis to date but this ANCA GPA stuff is crazy. Have they tested you for it? It can affect just your sinuses or just your lungs or just your kidneys or two or three or many more organs. And the problems you had with choleatomas, I actually have an 18 year old nephew who had surgery when he was about 10 for that issue. So frightening the things that can accidentally happen during surgery. That pin hole changed your life. And yes, I am afraid now that the other ear is getting infected since I didn't have "classic" symptoms before.
Thank you so much for reaching out to me and I look forward to hearing from you again. Praying for good news for BOTH of us!
Godspeed,
Melody
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1 ReactionI have not been tested, actually never heard anything about it. However after researching it I am definitely going to be tested. It fits so much of what I'm experiencing. I've always thought that a lot of my symptoms were related to vascular issues, R enlarged jugular vein, R enlarged collateral vessels in my neck. R sided partial paralysis when swallowing as well as difficulty with intubation. All since last Covid.
I have cervical stenosis with cord compression but neurosurgeon (saw just past Monday) said surgery is my only option but..... I failed all neurological tests and that has to be addressed and treated before he would consider any surgery.
So now it's all a wait and see game.
I'm very surprised, happily, that your grandson hasn't had any other issues with cholesteatomas. I had numerous prior to the radical mastoidectomy.
Prayers for you and your family.
Thank you for sharing your story and I will keep you posted ❤️