Hi all brave warriors,
My name is Jana. I’m 44 years old. I have complex Chiari 1.5 malformation, diagnosed in 2019. I had decompression surgery in 2021, which helped a little bit. I’m still off balance at times, and my eyes act a little funny when I’m on the computer at work—but I’m dealing with it and have learned how to cope.
I have scar tissue that built up there, which is why some of the symptoms have come back. My neurologist mentioned there’s no guarantee the scar tissue won’t return if we did a revision, so I’m waiting it out and praying it doesn’t get worse.
In 2022, I was diagnosed with stage 2 ER+ and PR+, HER2- breast cancer. I had a lumpectomy on the left side, then went through 4 rounds of chemo and 33 rounds of radiation because my Ki-67 was at 95% and very aggressive. Clean margins, thanks to Jesus!! I was put on hormone blockers—tamoxifen first—but it caused too much endometrial thickening, so I had a complete hysterectomy. Now I’m on anastrozole, which I can barely tolerate due to side effects, but I still try to take it.
I also had a gene mutation, PALB2 of unknown significance. This year (2025), my doctors discovered I have osteoporosis in my lower spine and osteopenia in my hip from all the treatments. I just started taking Tymlos injections every day for new bone growth and support. I’m doing follow-ups and diagnostic mammograms.
In 2024, I was diagnosed with papillary thyroid cancer. I had a right partial thyroidectomy, and six weeks later, I was put on thyroid meds due to becoming hypothyroid. I’m still trying to get leveled out on levothyroxine (T4) and liothyronine (T3). Clean margins again, thanks to Jesus. They say it’s not related to my breast cancer. I did have another gene mutation come back with this one, but it wasn’t too concerning. I’ve been doing follow-ups and ultrasounds regularly.
I am still pretty active, and I pray to stay this way. I’m trying to do all the right things for my health. Many prayers to all who are dealing with similar challenges—or anything else. Please reach out if we have a lot in common.
Thanks so much!!!
Jana
CO
Submitted 09/02/2025
This story is intended to convey a personal experience and should not be relied upon as a substitute for professional medical advice.
