Temporal Artery Location Difficulty Locating for Biopsy

[8sandylou]

I have just had a Temporal Arteritis Biopsy against my GPs wishes but almost demanded by Surgeon hospital sent me to.....Operating Surgeon was very hesitant as he could not feel a pulse at all in the Artery and it was so small had to be marked out on my head with Doppler Ultra Sound - Artery above ear instead of in Temple???? Wat does all this mean??? Prednisone does stop headache almost immediately but not for that long. I do not have results yet.... Thanks if you can make something of this??

[Erolyn]

Mine was above L ear. 2 weeks on Prednisone 80 mg a day, so of course negative result. Now they want the R side biopsied. I don't think so after 8 weeks of prednisone. Scalp prickles constantly, eye pain and optic disc still a little swollen. No sign of PMR thankfully, as my late mother suffered with this till she died.

[Doralouise77 in reply to Erolyn]

I'm wondering if you need even a higher dose of Prednisone if you're still having symptoms. The aim is to be on a dose that alleviates symptoms, especially those involving the eyes. Best of luck in getting some relief and things resolved.

[Caro12line]

My biopsy was above left ear. But the surgeon didn't seem to have any problems locating it. Had mine 3 days after starting Pred. It was negative.

[Polywotsit PMRGCAuk team member]

HI,

Sorry you are feeling confused, but it's not really surprising seeing as around half the biopsies return a negative result even though the rheumatologist is convinced that the patient has GCA. The reason for this is that the giant cell might not turn up in the sample. but it is the 'gold standard' they are looking for that will make the diagnosis certain. The fact that there wasn't any pulse though is a sign of GCA - perhaps the artery was blocked further 'upstream'.

After a couple of weeks on steroids the inflammation of the giant cells will have shrunk to almost nothing anyway, so it will be too late to perform a biopsy. Ultrasound may prove to be a better alternative and less invasive. The TABUL study has been investigating this and will be reporting soon. But it will take a long time to train the ultrasound technicians and make sure that it is available to everyone suspected of having GCA.

[PMRpro Ambassador]

If there was no pulse to be felt in the temporal artery then that is usually taken as a sign of arteritis - the inflammation thickened artery doesn't allow enough blood flow to cause a pulse. This is a picture showing the location - the frontal branch of the superior temporal artery is above the ear.

The second video in this link shows the track of the temporal artery - it is the area the artery supplies that gives it its name less than the position and is above the ear:

emedicine.medscape.com/arti...

[Caro12line in reply to PMRpro]

My TAB was straight across the top of the ear to the temple, not going up from the ear as shown in the video. ? I have a photo but didn't post in case some people don't want to see.

[PMRpro Ambassador in reply to Caro12line]

Everyone will have a slightly different track for the blood vessels - I have to admit that when people have asked about where the temporal artery is in the past I've said "sort of where the leg of your specs runs" but that also goes "above your ear". How far above your ear is another matter!

[Dawnie08 in reply to PMRpro]

Hi I have been getting a lot of neck pain putting down to muscle spasm going with the nerve pain in my now frozen shoulders. After reading your piece about GCA I decided to feel the pulse behind my ears. I could feel it on the right side, but on the left side where my neck and ear hurt there is little or no pulse. I am getting my results from my orthopedic surgeon tomorrow for a bone med scan regarding the Shadow on C7 Picked up on the last MRI. I am beside myself with constant pain, I had a terrible migraine all night last night and generally very down. Where can I go from here?

[PMRpro Ambassador in reply to Dawnie08]

Poor pulses are a common finding in GCA and your description of your symptoms are also pretty typical of PMR and GCA.

It very possibly isn't frozen shoulders but PMR and you are developing GCA - it might not be and I hope it isn't but you need a rheumatologist or someone else experienced in GCA. And asap. 

If you have ANY visual symptoms at all, however fleeting, please go to the ER as an emergency and be insistent about being seen and heard.

Please also post your question as a new thread - this is unlikely to be seen by many others and you won't get their opinions which you need to hear too. And mention my response too.

[Doralouise77]

I wonder if splitting your Prednisone dose would stop the headache from coming back. Some literature does suggest splitting into two or three doses. Good luck!

[Hidden]

No pulse? Wouldn't it be an emergency? What does your Rheumy Dr say? Just imagine if we did not have this forum? 😱😱

[PMRpro Ambassador in reply to Hidden]

"No pulse? Wouldn't it be an emergency?"

No, not really - all that happens is the area the artery supplies is a bit less well supplied with blood but when the blockage happens over a longer period of time, the middle of the artery narrowing slowly like when silt builds up in a stream, the blood finds other ways to get round the blockage (much as we use side roads to avoid heavy traffic) and everything is fine again. With the temporal artery it is just one of a lot of small arteries supplying the same sort of area and tiny capillaries form relatively quickly. The technical word is "developing collateral circulation". It is often found in legs too when arteries become blocked and you have claudication pain - walking as much as you can despite the pain helps develop this collateral circulation.

That is also the reason the temporal artery is used for the biopsy - it is superficial so is easy to get at and doesn't have an irreplaceable job so it can be removed to be looked at. They don't usually sew the ends back together which speeds up the job and the healing process - they need quite a long piece of the artery so it would be hard to join the ends. The temporal artery is by no means the only place the giant cells can be found - so referring to GCA as temporal arteritis is very misleading at any level. Sometimes the temporal artery isn't affected but other far more important arteries are - so the symptoms are far more important in many ways than the result of the TAB.

What IS an emergency is when a narrowed artery supplying an essential part of the body such as heart, lungs or brain becomes blocked suddenly with a clot that is too big to get through the narrowed gap - and the result there is a heart attack, pulmonary embolism or stroke.

[Hidden in reply to PMRpro]

Amazing reply, PMRPro!! ☺️👍💫

[8sandylou]

Thanks heaps.....I've had the Biopsy....Aneasthetist assisted surgeon in Operating Theatre to find it with his Ultra Sound.....then marked it out for him.....surgeon was still grumpy bout doing it as the Artery was so Thin and as I said he couldn't feel the pulse in it...I'm home now was in hospital for 4 days before Biopsy, so 4 x 50mg Prednisone before Biopsy.....I have many other Disabilities Starting with Spondylolisthesis (2 Radical Spinal Fusions broken Metalwear still in Situ) Rheumatoid, Osteo, Hypothyroidism, Hyper Lipadeamia, so probably not surprising it has come to this....but False Negative won't be helpful.....I'm seriously considering not taking the Prednisone regardless of result as the side effects for me might just be too bad....am I being ridiculous???? my Meds are already Oxy Contin 20 S/R 2/day, Dueloxetine 60, Gabapentin 300 3/day, Crestor 20, Eutroxig 50, Indocid 100 Suppository 1-2/day, Salprez 20. First repair to my spine to spine 26 y/o.....now 54. I guess I'm wondering if the Prednisone is worth the misery it brings ??? 😁😁😁

[PMRpro Ambassador in reply to 8sandylou]

As Celtic says - it depends how you look at it. Pred doesn't always bring misery, everyone is different and some people have relatively few side effects or nothing more awful than weight gain.

On the other hand, if what you have is GCA and it spreads to the artery that is blood supply to the optic nerve there is a very real risk of loss of vision if the inflammation isn't reduced very rapidly. It is irreversible - not like cataracts or a torn retina where surgery can sort it out.

The headache itself is often a result of poor blood supply to the brain because the small arterial blood vessels are narrowed, reducing the blood flow - and long term that is also not good. If it progresses it can lead to stroke with all that can entail.

I know that sounds alarming and depressing - but it is the real potential situation. So "Is pred worth the misery it brings?" It is your insurance policy that you hope you will never have to claim on.

[Celtic PMRGCAuk volunteer]

8sandylou, my heart goes out to you, you have so much going on. However, if your temporal artery biopsy proves positive for Giant Cell Arteritis/Temporal Arteritis, then, yes, "Prednisone is worth the misery it brings" as it is the most tried and tested drug proven to protect us from the risk of loss of vision due to this condition. However, many people can have a negative biopsy but still have GCA as the large cells they are looking for can escape the tiny portion of artery removed. As you say that the Prednisone stopped your headache immediately, then in the event that your biopsy is negative, your response to the steroids will no doubt be taken as proof of GCA.

In the event of a negative biopy, there is another test available - a PET scan (Positron Emission Tomography) which is considered to be a more reliable marker for GCA but it is very expensive and not widely available. Perhaps worth enquiring if a special case could be made for you in view of your many health problems.

As for whether Prednisone is "worth the misery it brings", although there are many possible listed side effects, some people have very few and the really lucky ones don't have any, BUT the relief of pain and the protection that Pred affords our eyesight far outweighs any side effects.

As far as the Prednisone is concerned, I am sure your medics will check that there is no contra-indication with the other medicines you are taking.

As another person with spondylolisthesis, I know how debilitating that can be, especially during episodes when the spine goes into spasm. After many consultations with different orthopaedic consultants years ago, I took the advice of the final surgeon not to go down the spinal fusion route but do tend to often walk on eggshells with it. Living with "broken metalware in situ" must be agony in itself - I have a friend in Australia who has just experienced remedial surgery following her spinal fusion for that reason. I'm sure she would be happy to link up with you if you think it would help.

Lots of good luck wishes, and do keep in touch now that you've found us.

[8sandylou in reply to Celtic]

Thankyou Celtic for such a massive and complete response to my msg.....I really appreciate it and would be very happy to talk to your friend in Australia.....as my 6 hr op was the benchmark repair at the time and taken to USA to symposium, hence my Neuro and Ortho team still following and supporting me in the background.....and not charging over Medicare levy for surgery...if my lifetime of dramas with this crappy back can be of help, I would be most happy. If I've learned anything it's that it's not the surgery we've had, it's the next one we are hell bent on avoiding...lol. I have another break I have not and will not have repaired unless it risks my legs....it seems to go along fine with a Cortisone/Demarol needle round once a year.....anyway I could go on foreva ...but THANKYOU very much😍😍

[Celtic PMRGCAuk volunteer in reply to 8sandylou]

8sandylou, I've sent you a personal message with my friend's contact details in Australia. I've been in touch with her and she is perfectly happy for me to send you her email address.

[8sandylou in reply to Celtic]

Hi Celtic, I have been in contact with your friend who I must say is very brave going through all this at her age...I was 26 wen my surgeries began (10 " tall and bullet proof😁). The older I get the more I fear it......anyway I had Negative result for my TAB and I'm happy with that...not even going to the False Negative place coz Prednisone and its side effects are hellish on me and would cause too much damage to my Spine re Spondylolisthesis. My GP is cross with me for having the Biopsy and all it risked (small town General Surgeon) so gotta win his trust back now I spose..lol.

[Celtic PMRGCAuk volunteer in reply to 8sandylou]

I'm glad you have been able to 'chat' with my friend who is in a similar position to you with regard to Spondylolisthesis. The result of the temporal artery biopsy is also good news, but although I can understand your reticence about adding steroids to all the medications you already take and the possible side effects to your body, do please remember all the advice we gave you in reply to your original post about the uncertainties surrounding the TAB. With the original dose of Pred having had such a good effect on the head pain, the suspicion of GCA unfortunately still remains. Do remain very alert to any sudden problems with your vision, seeking emergency advice if concerned. Meanwhile, I wish you all the very best.

[Hidden]

I also wonder if PET will go negative on steroid after a while. Steroid does reverse inflammation so the results would also get negative. Timing seems to be always wrong.

[8sandylou]

i am utterly affected by it to the point of being disabling.....as my GP knows after past 5 day decreasing on it for shock Fibro episodes in past.....Mayb why he was adamant he didn't want me to have the Biopsy and put me on Tegretol.....trust him implicitly....he has risked a lot in his career on certain treatments for me.....but think mayb he has decided I have had enuf intervention....now healer heal thyself ....dunno but I went against his advice and went to surgeons appntment anyway and was not allowed home til it was done....sheesh.....of course I could have done a runner but I'm tormented by how much I need to know...hence my comments on a false negative being not helpful lol 😁😳😳

[Hidden]

Good luck with the results. I think you are brave, 8sandylou. Hope you feel much better soon.

There are lots of things I never fully comprehend in this complex condition. Diagnostic methods do not appear to work for all the patients but only some of the patients. I'm almost sure that if you have been on high dose steroid for some time, there's virtually little / no point of getting any PET or biopsy done, perhaps, except ultrasound (easy to do) or angio - it may still show signs of the previous inflammation? I have had the visible swelling of my superficial temporal veins on both sides. You would have thought that's where the biopsy would be done (over the swelling). I have, in fact, seen a photograph of a man who had his biopsy in his temple. He had a "cut" where his swelling was in his temple, not above his ear. It seems that the specialists themselves haven't really figured things out themselves in terms of how best to catch this disease in a timely manner. No wonder some of us rely on a forum like this..

[8sandylou]

So true!!!😃😃

[8sandylou]

Thanks Celtic I will most definitely be contacting your friend shortly.....hope I can be a positive help......I finally had GP appntment and fessed up about the Biopsy.....he was astounded I had gone ahead with it ....happy no damage seems to have been done.....and took me off the Prednisone until he sees evidence of a Positive result from the Biopsy...when I asked him if a false negative came thru is it just too bad ....he responded "yes too bad". The risks to me from Prednisone in his opinion does not outweigh the benefits for my situation. (He's been my Dr for over 18 yrs). So I await a hopeful negative...😜

[Celtic PMRGCAuk volunteer]

8sandylou, my fingers are crossed for you whilst you await the results of the biopsy, and especially crossing everything that your head pain doesn't return after stopping the Pred. Meanwhile, just remain alert for any changes/problems with your vision and seek immediate advice at A&E (emergency room) if at all in doubt.