TABs Temporal Arterial biopsies - numbness, scalp & nerve pain.

Posted by wendy517 @wendy517, Jul 13 7:57am

Hi, ive got 3 & 2 inch incisions down my temples to side of my ears and biopsies were negative for GCA ( my Mom had GCA and PMR, both have been in remission for 9 or 10 years).

I was told it's totally normal to have numbness and nerve pain for months. It's been 3 months and could it really go on for up to 6 months or more?? Luckily the nerve pain has subsided a bit but still get bouts of nails/pins being stabbed into my head in the area, very focused on the left.

My pain in general for almost everything is left sided - is that a thing??

Anyone who can shed light on their experience with TABs, my Moms incisions were tiny, barely half inch on each side. I do understand the surgeon wanted to get multiple pieces of artery to test on each side but at what cost if this ends up permanent? I dont want to even think about that being the case.

I'm hoping to hear it got better at 6 months or even it got better at a year later.

I'm grateful the psychotic break I had with being put on 80mg prednisone only lasted a few weeks after I titrated down 60, then 40mg and it got SO bad I went off it cold turkey at that point. One ER visit 3 days later because it gave me an unbearable migraine or whatever kind of headache since I get different kinds. It was a nightmare, never again with high dose prednisone, I should have been given methotrexate with a much lower dose of the steroid. Another very bad call by a doc and I paid the price big-time. I'm losing a dear friendship over it, she just did not understand about what Psychosis does to someone, we aren't in our right minds. Horrible Horrible feeling I never ever want again. My mother had the same issue and she was on 40mg when it happened, we are the only ones in our family that understand each other's angst over the chaos we caused. It was not our faults but you feel at fault, damn women guilt syndrome strikes again.

Please share, thank you 🙏 ❤️

Be well and stay strong 💪 🤘 ❤️

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momac59 | @momac59 | Jul 14 5:49pm

I have those same 3” scars n both sides of my head. I spent 2 weeks in Mayo Clinic in late April, brought in through the ER very sick I was released from 2 different ERs in the weeks before when they did not know what I had.
I’ve had Lupus, Hashimotos $ diabetes for 3@ years. My inflammation markers were through the roof. Mayo listened to all my worsening symptoms, admitted me, promising they would keep me until the mystery was solved. That’s when they suspected a new autoimmune disease; GCA. The biopsies proved it The left side where the pain, eye involvement was worse came back negative but right side was positive. I felt like the Bride of Frankenstein with the stitch & big blobs of glue. It took forever to heal & sometimes 10 weeks later the scars get angry looking & I experience headaches daily in the temple area & behind the eyes. Thank goodness it’s mild but even my Rheumatologist capsay if this will be my new norm. I am tapering down from very high doses of Prednisone but when getting to 20mg. I had a bit of a relapse so back up to 25mg./day. I will be starting Actemra as soon ad thud week? If I receive my shipment from pharmacy. Hopefully this will help me get off prednisone sooner. Bad side effects! I am trying to learn as much about this new autoimmune disease for me. Never heard of this one but for me much worse than Lupus.
What seems to help with headaches is a combination of s few things. Cold compresses across the eyes & temp. area, chair yoga, balance rest with gentle activity. Meditation when actually do it! Trying to get enough good sleep but that’s been hard. Prednisone doesn’t allow me to sleep more than 5-6 hours a night. Naps are important. Even short 40 minutes.
Best of luck on your journey with our unwelcome passenger, GCA. It’s been hard but it could be worse & I’m learning so much from sites like this. I’m so grateful for each day that’s better!