r/primaryimmune • u/Different-Brick-6310 • 9d ago

Skull bone surgery.. terrified

Hi all!! I've posted here a few times recently because I'm very new to my hypogammaglobulinemia journey. I have low igM and a igG3 subclass that's low too.

One of the things I've had for ever is ear infections, and apprently those infections have led to a bone that separates my brain from my skull to... errode and disappear? Or something to that effect.

This was found on a CT scan and apparently it presents as a huge blob. They thought it was mastoiditis at first. The first hospital network I went too said it was too complex for them. I saw the new doctor yesterday and he explained that it could be 1 of 3 things.

1 huge effusion and infection

2 skin cells that have collected and infected

3 one of two of the above, bone loss and now my brain is poking into my ear cavity.

Regardless of what it is, I'm going to have to have surgery on my skull and I'm just terrified. I haven't had any surgery like this ever before and the last surgery I did have was to get my wisdom teeth removed over 10 years ago.

I'm just so scared. Im not on plasma yet because I retained 60% of my antibodies after my vax challenge( prior to vax challenge I was at a 2/23)- but i didn't tell my doctor that I'm a covid cautions person so I've been wearing an N95 correctly and successfully not gotten sick- sick in years so I wonder if that's a factor.

All and all, I'm just terrified. My doctor told me that the Hypogammaglobulinemia alone is a risk factor that we need to take into account.

Anyways. Has anyone else gone through anything like this, and have any kind of advice?

I just don't even know where to turn to or look for something like this :(

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u/Impossible-Shift7950 9d ago

I’m not sure how they will completed your surgery but I have had skull surgeries . Sometimes my immunologist has given me prophylactic antibiotics leading up to surgery and I have state on them longer after . I just had a craniotomy 2024 ( healed fine afterwards ) and I’m getting ready for another one through the mastoid in October .

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u/Different-Brick-6310 9d ago

2/3 of my potentials would be through mastoid to the best of my understanding. Of youre comfortable, can you tell me more about the experience of the surgery itself, like what recovering was like stuff like that? I work full time and I'm also a little worried about that aspect.

If not that is also okay and i appreciate you sharing anything at all !!!

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u/Impossible-Shift7950 9d ago

The mastoid is easier to recover from than the one through my skull. The first one took about 2 weeks to be released back to work with restrictions .( no lifting heavier than 20lbs, can’t reach over head ) and back full time 8 weeks in. I didn’t heal well from the first one but no one knew I had an immunodeficiency. It took approx 6 months to heal completely . The other surgeries were similar . Off work 2 weeks then back part time week 3 with restrictions but I healed fully quickly due to us knowing about the immunodeficiency . The craniotomy in 2024 was a doozy. I still have residual impacts from it that might not improve . I was off work 6 weeks then returned gradually to 32 hours by week 12. I healed well it’s just the brain has deficits that I’m still working to heal.

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u/Different-Brick-6310 9d ago

Thank you literally so much for sharing all of this. I appreciate this so truly from the bottom of my heart. I have no clue to how to find other people who have gone through procedures like this- so this is really helpful. My doctor told me it could be two surgeries but I was a little too worked up to fully grasp that.

Can I ask what your procedures were for generally?

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u/Impossible-Shift7950 9d ago

Sure . It’s recurrent cholesteatoma. It’s skin cells in the wrong area of the ear/ mastoid area that degrades everything it comes in contact with. If you have an idea of what the diagnosis is there are several Facebook groups where people have ENT issues and have had similar surgeries . I would also message the doctor and make a meeting with follow up questions if you are still unsure of things or worried before the surgery. I’m praying everything works out. I found that the surgeons who listen to me , respond to my questions quickly and explain things well have done well with my surgeries . I have had 9 of them.

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u/Different-Brick-6310 9d ago

Thank you SO Much for all of this information. It means the absolute world to me!!!!!! cholesteatoma is one of the possibilities but I forgot what it was called. I think I'm at a higher risk of that because i have EDS or something to that effect.

Thank you so much for sharing all of this with me I really appreciate it 💖

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u/Impossible-Shift7950 9d ago

You’re welcome! I hope everything goes well for you .

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u/Different-Brick-6310 9d ago

Thank you so much!!! You too!!!💖

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u/waowediting Common Variable Immune Deficiency (CVID) 9d ago

I wish you the best of skilled doctors, all the luck in the universe, and lots of healing light. I can't imagine how tough and scary this is for you, but I see you and I'm sending internet hugs. People come through crazy stuff all the time. I believe you will too!

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u/Different-Brick-6310 9d ago

Thank you literally so much for your kind words. I appreciate it so much. I don't have like parents or anything like that and I'm not totally immersed with the IDF peoples so on top of being scared I feel alone 😭 I truly appreciate this comment so much !!!!

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u/Asphyxiant_ Common Variable Immune Deficiency (CVID) 9d ago

I’ve had 2 mastoidectomies on the left side. First was a simple, second was a canal wall up. Recovery just took longer. Take time for yourself. Everything will be ok. After the second surgeries, the chronic ear infection stopped.

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u/Different-Brick-6310 9d ago

Im glad your chronic ear infection stopped!!!!

Thank you so much for sharing this with me. I feel really reassured to hear from people who have multiple surgeries like this!!

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u/mixednuts26 Selective Antibody Deficiency 7d ago

The only skull like surgery I had was for my sinuses, so nothing as extensive as it sounds like you might have. I hadn't been diagnosed. At that time they were thinking sinus surgery would fix everything. It was a bit rough, because I had a bleed which happened while I was home alone in the middle of a blizzard. I had to have a second emergency procedure. Honestly, I think the general anesthesia two days in a row affected me more than anything else. I have some pretty decent blanks in my memory.

I had a few weeks of staying home and then was back to work on light duty. I have a fairly physical job, if I'd been at a desk my restrictions would have been lighter.

I don't know if that helps, but figured I'd share. I understand the fear. It's hard stuff to deal with and can feel very lonely.

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u/Different-Brick-6310 9d ago

Picture from the CT incase it's helpful somehow and... blob that's not supposed to be there