SunshineWalker/Katie Had Major Surgery - 2X in the Past 2 Weeks

[dakski]

I've been less active on the forum for some time. I've been dealing with my normal health issues (mostly kidney transplant related) and work stuff, but also, SunshineWalker/Katie, has been sick for months.

She started having a headache soon after we got married (we were married in May). It was intense and constant. Originally, the doctor thought it was a tension headache, but nothing touched it. Not muscle relaxers, not painkillers, etc. After weeks of worsening pain, we got a CT Scan and there appeared to be a mass in her skull/brain in the petrous apex (basically the part of the skull behind the ear). For a while, we didn't get answers, and didn't know if it was something serious like a tumor or cancer. After getting bounced around to different doctors for a month, I called in a favor at Yale New Haven Hospital here in Connecticut (where I had my kidney transplant and get much of my care). We quickly got into to see one ENT but he was pretty sure he wasn't the guy we needed. He focused on sinuses, and this was a "lateral issue" being in the petrous apex. He ordered more scans and told us to see his associate, who specialized in this region.

They told us we could see the specialist in 2 months! I raised holy hell and told them to call if there was a cancelation; we would be there. Katie could barely work and was a wreck and in pain all the time, 24/7. The pain was also getting worse every day. We ended up getting in to see the doctor/surgeon within a week and he told us he was pretty sure that this was not cancer or a tumor. He diagnosed Katie with a cholesterol granuloma. It's basically a benign fatty cyst that can form in the skull and when it gets big enough, it puts pressure on the skull/brain and causes intense headaches that do not quit.

Fast forward to two weeks ago. Katie went in for surgery to drain the cyst and put a tube in to help it continuously drain, as if you drain the cyst put do not put a drainage tube in, it will refill again. The surgeon, one of three in the state who does this surgery, said there was a 30% chance of 2-3 months of severe dizziness and balance issues, and a 30% chance of permanent hearing loss in her right ear. That's if everything went well. We discussed the possibility that if things did not look good, he would stop the surgery and go back another day.

After 4 hours of surgery, the surgeon did not like what he saw, pulled out, and Katie woke to intense surgery pain, still having the headaches, and the knowledge that she would have to do the surgery again. We were all upset. However, the surgeon stuck to the plan and I respect that. If he had continued to drill, there was a large possibility of worse outcomes (facial paralysis, permanent dizziness issues, etc.)

Katie got more imaging, and the surgeon now had a reference point (the path he had already drilled) to see how best to drain the cyst.

The surgeon went in yesterday, successfully drained the cyst, and Katie can hear and her balance appears intact. PHEW!

She's already starting to feel better and I am being nurse and helping with her meds and pain management, etc.

I wanted to share this with everyone as I feel part of this community and a) wanted everyone to know what we've been dealing with, and b) explain why I've been fairly absent of late.

We will know for sure if the cyst was indeed the cause of the pain in the next week or so as swelling goes down. However, all indications are good. The doctor figures 99% it was the cause.