Biopsy on temporal artery... anyone have this done and what were the results/follow up?

[Cora_sMom]

I went to the doctor yesterday - not my normal doctor. I have headaches on the right side of my head only that feel like someone is driving railroad spikes into the side of my head, it hurt when she touched the area around my right temple and my right eye vision is blurry. She did bloodwork and got me into a surgeon for a biopsy tomorrow to rule out temporal arteritis.

I am on Prednisone as of today - 50 mg as they are treating me as if I have it.

Anyone else have this condition? I am in my mid fifties, type 1 diabetic and wondering “what next.” Hoping the biopsy does not keep me from riding.

Thank you.

[ohnoO]

Ooh, I have a friend who recently had that done. I’m not sure they have really figured out what is wrong with her, but her biopsy came back negative for Temporal arteries.

She only has general aches—low grade fever, low pain headaches, etc., mostly it manifests as lower back pain. They put her on low dose of prednisone (20 mg, I think) and that has helped but nobody has figured it out.

We all kidded her that her bruses/incision at her temples are a telltale sign of a face lift!

If it is Temporal Arteries, it seems that it’s really important that you stay on the prednisone.

Do do you see a rheumatologist?

(My friend is not a rider—she is scared to death of horses—dogs and cats, too ! If you could imagine that there are people like that!)

She was weak for a week or two, then when she started taking the prednisone, she got a lot better.

Jingles for for a good outcome.

[Cora_sMom]

The biopsy came back negative. I have a follow up appointment on Wednesday. So far a good outcome - just need these stitches out so I can get my helmet on my head to ride.

[Cora_sMom]

For my follow up appointment three doctors were consulting and the decision was made to send me to a rheumatologist since the prednisone killed the headaches but the docs feel it is too risky to stop it… they might need to do a biopsy on the other side of my head for starters. The doctors said that false negatives and low sed rates are common - it is a big grey area. So, the saga continues…

[ohnoO]

If it’s any consolation, my friend recovered pretty well (maybe just remission?) on a low dose of prednisone. Glad it got rid of your headaches and you will be seeing a rheumatologist.
Keep us posted.

[Cora_sMom]

Rheumatologist is sending me for a CAT scan of my head to rule out tumors or aneurysms. He is leaving me on the prednisone until we get the results back but I have to wait for insurance to approve the procedure. He also ordered three more blood tests.

[ohnoO]

In the mean time I hope you are feeling better. Good luck with getting to the bottom of it all soon.

[Cora_sMom]

I am back riding since the stitches are out and my helmet fits again…the best therapy is on my TB mare Cora. We got out today on the trails and she was well-behaved for me today.

I am looking forward to finding out what caused these headaches and to see what the next steps are.

[eclipse]

Also get a lumbar puncture to rule out a slow cerberbral spinal fluid leak…tha can cause headache too! It will also show if there’s any abnormalities in the thickness of it, that could indicate something triggering headache

[Cora_sMom]

@eclipse

Also get a lumbar puncture to rule out a slow cerberbral spinal fluid leak…tha can cause headache too! It will also show if there’s any abnormalities in the thickness of it, that could indicate something triggering headache

The doctor talked about the lumbar puncture as well but for now he is going on the CAT scan result, when I can get it done… hopefully this week once insurance gives the go-ahead.

[walkers60]

MRI of your head.
You have already ruled out Arteritis so why the lumbar puncture, get a MRI first, non invasive and can look at your blood vessels and rule out other reason for that pain.
Cat scan is dangerous level of radiation, the doctors do it because of money reasons (cheap) . Insist on MRI instead( just as good) , look up the radiation level for Cat scan. also no Gandolium , currently under FDA investigation, dangerous. I know the man on team doing investigation for FDA this is not internet nonsense.

[Sabino]

I’ve had headaches only on the right side along with a droopy eye and cheek and pupil that doesn’t dilate since December. I’ve had 2 MRI’s and a CT scan. Seen an eye doctor, ENT and a Neurologist with no idea what the cause is. The headaches have definitely gotten less frequent, but the droopiness continues. I’ve been on antibiotics (twice), Prednisone (twice), antivirals (one of the docs was thinking Shingles) and I dip into my dog’s Tramadol when I get a headache. Wish they could figure out what it is… My next step is an appt at the Mayo in Rochester.

[Cora_sMom]

My CAT scan is scheduled for the 21st of March. I see the doctor on Monday so I will ask about the MRI instead of a CAT scan. I had three headaches “breakthrough” the prednisone - not as bad as they were but there is always something there to remind me they can come back - I cannot describe the feeling that is always there. My short term memory is going and my scalp is still tender to the touch.

[rubygirl1968]

I hope they can give you a diagnosis. That has to be scary for you.

Lots of jingles for you!

[Cora_sMom]

Per the doctor we wait for the results of the CAT scan scheduled for March 21st. I had another breakthrough headache a little while ago and the doctor was a bit alarmed when I said I noticed my short term memory is going. I have to write everything down so I can remember. He said they will be looking for tumors or things of that nature… that is the unnerving part.

[Cora_sMom]

CAT scan was done yesterday… my doctor was not in today so hopefully I have results on Monday. If nothing shows up I was told an MRI is next. Headaches are breaking through the prednisone here and there.

[Cora_sMom]

CAT scan came back negative other than a hole in one of my sinuses but that does not bother me. Rheumatologist is going to start weaning me off of the prednisone (yay!) but whatever is causing the headaches is not caused by inflammation. Next step might be a neurologist but I follow up with the rheumatologist next week. Headaches are breaking through more and more. Back to square one.

[eclipse]

How has the weather been where you live? Do you get lots of pressure changes…I ask because in Calgary we are notorious for weather migrane and actually have a headache clinic due to the amount of migraine we get related to weather here! We are quite high up, and get Chinook winds that change temperatures to the extreme fast…think changes of -25c to +15c in 12 hours…people start suffering 12 hours before with migraine from the pressure change alone! I do…they are debilitating. Sometimes mine are classic migraines and sometimes they are like what you described, feeling like an ice pick…all scans are clear. Many people get put on blood pressure medication that has helped them, have your drs suggested a bp med? I couldn’t as it brought out my asthma!

Another thought…I’ve also suffered from hormonal migraines. They’ve got worse as I’ve got older. Since we found my estrogen driven breast cancer and I’ve been put on Tamoxifen to stop my estrogen guess what’s also stopped…yes my hormonal migraine! Maybe ask your drs to check your estrogen and progesterone levels. There are some indications that certain migraine sufferers benefit from Tamoxifen if their headache are due to hormone imbalance!

Good luck, migraine are a very hard and nasty thing to pinpoint. It’s one of these "invisible " diseases that many people don’t understand and think "oh just a headache "!

[fordtraktor]

What you describe is exactly what my migraines are like except mine are on the left. Jingles you get some answers soon. has your doc ruled migraines out? Have you tried a triptan? I am on this new drug called Aimovig and it is really helping me. A shot once a month cuts down my headache occurrences by 2/3, but they still hurt just as much when I do get one.

[Cora_sMom]

The docs have not called the headaches migraines… yet. I read something about “ice pick headaches” and that described the feeling perfectly… I called it the railroad spike headache. I would love to know the cause. Could be life as that is stressful…but with horses to relieve stress the two should cancel each other out.