Temporal Artery Biopsy: I’m not sure if I should be... - PMRGCAuk

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Temporal Artery Biopsy

Denis61
Denis61

I’m not sure if I should be worried. My temples and cheeks hurt and my vision is blurry.

I am terrified over a temporal artery biopsy. Is there an alternative to diagnosing GCA?

30 Replies
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Hi Denis, I had one past summer and it is fairly a benign procedure..it should be done by a vascular surgeon.. it is usually done local and under sterile procedure. sound scary but ask

lots of questions and follow up with your Dr. Geo Dog

PMRpro
PMRproAmbassador

In some hospitals the temporal and brachial artery ultrasound can be done but not all have staff who are trained to do it. Many rheumatologists would diagnose on the basis of the symptoms and response to pred. The biopsy is really not the end of the world but I can understand being scared at the thought.

Where are you?

Denis61
Denis61 in reply to PMRpro

CHARLESTON SC USA

PMRpro
PMRproAmbassador in reply to Denis61

Then Georgedog's post is applicable - you do need an experienced vascular surgeon where possible. In the UK it doesn't matter what sort of surgeon YOU want to do it - it's who you get!

Lee1945
Lee1945 in reply to PMRpro

I was fortunate then! I went to the Kent & Canterbury Hospital and had an experienced Vascular Surgeon

It is the Gold Standard at the moment for making a Diagnosis of GCA , until the appropriate Ultrasound is available in all hospitals.

Tests are unnerving at the best of times , let alone when it also involves a small surgical procedure , but it is worth it in the end and if you can try to distract your mind with things and try relaxation before the event you will be less anxious and cause less Everyday Pain from growing from being Tense.

I had a lip biopsy for Sjorgrens , and although the cut was uncomfortable for a time and took a while to heal all went well and I got that reassurance from a Negative result that no other tests could give me.

The procedure itself , much like the TAB , was easy with no complications and the whole thing was done with Professionalism but also Great Care . The Staff involved in more invasive testing realise that you will be nervous not just because of the test itself but because you are still coping with the worry of not knowing what you have. They keep this in mind and do everything they can to make your comfortable and give you support and reassurance both before and after these events . I hope that helps give you some peace of mind about doing it and we will obviously be available to answer any posts you want to do before and during it to help give you a supportive hand to hold.

Take care and try to rest xx

PMRpro
PMRproAmbassador in reply to Blearyeyed

Except it is a rather tarnished gold standard - a negative result in a TAB doesn't mean it isn't GCA, it only means it couldn't be found in the sample they took and that isn't the same thing at all! A positive is 100% certainty though.

Blearyeyed
Blearyeyed in reply to PMRpro

Yes, it has a lot of variables that can cause inaccuracies , but at least it isn't as scary an option as reading about it on the Hospital description implies. As you say though , working on the symptoms that are presenting themselves will often do more good for the Patient.

Yellowbluebell
YellowbluebellAmbassador

I had one done when i was in my thirties and it was a doddle . Staying awake was odd but the staff reassured me all the time and i was out playing crib that night(and won). Just think nice calming thoughts like holidays and you will be fine. Let us know how you get on. YBB

I had a biopsy. Hurts a bit. The scars healed in a week. Not a big deal. And a sure way to know what you have. I say do it. Good luck.

Denis61,

I had the Biopsie and did not have any problems. I did have GCA. I am not sure but I think an ultrasound is a way to discover GCA and is not invasive. I hope this helps.

There is an ultrasound test. In the U.K., we have a shortage of highly trained technicians. It is worth asking. Although a Temporal arterial biopsy is very accurate, they need to perform it in exactly the right spot, otherwise you can get a false negative. They can probably give you something for the fear. I have been prescribed Diazepam for a test, and I honestly didn’t care.

Hi Denis61, I had the worse headache that I had ever experienced in my life; both temples hurt to the touch and even my hair hurt! I had been seeing an Osteopath, because my neck and shoulders were killing me and I couldn't turn my head at all... The headache was non stop regardless of what I took for it... My vision was not blurry, but I did have pain behind my eyes. They did not do a TAB on me as the Specialist said the risks outweighed the benefits; so instead they started me on Pred and said if I got better it was GCA. I was better in less than 12 hours! It was GCA & PMR!

It seems the main advantage of having the procedure is if the result is positive then there is no backtracking and attempts to change the diagnosis later, as seems to happen too often. On the other hand if the result is negative but you have the symptoms then you have to be treated on the basis of the symptoms anyway.

Denis, I had the biopsy, slept through it with no discomfort after. Most of the specialists in the states feel it is the only difinitive diagnosis for GCA. You jeoporadize your eyesight if you put this off unless they start you on Prednisone right away. I lost the sight in my left eye because all the syptoms we shared were diagnosed as a sinus infection and it was only after I lost my sight that they put me on prednisone. I have a good friend whose biospsy came back negative but she was treated based on her symptoms....save your sight. I am not a professional but speak based on my experience. I don't know about the UK but now that Actemra is available for GCA I think they like to nail down the diagnosis if possible. All of these 'miracles' come with side-effects as you know.

I've now lost some sight in my right eye but will put up with a lot of 'you know what' to preseerve what I have.

Be aggressive...be brave. Know you have my prayers and the prayers of many. This group has made such a positive difference in my life.

As PMRpro says not a great 'gold standard' re accuracy and I also wonder about the time that elapses between turning up with what are very possibly GCA symptoms and actually getting a biopsy. If eyesight is affected I can't see why they don't err on the 'safe side' anyway and start people on Pred- 'proactively' or quite fast. If it doesn't work effectively then it could be something else. I didn't wait for a biopsy and with no other diagnostic tests where I am and having a PMR diagnosis already I went straight to a higher dose of Pred.

Others here who have had the biopsy - which you may have done by now anyway - seem quite OK generally with it though.

Best wishes

Grammy80
Grammy80 in reply to Rimmy

Such good advice!! I sure wish I've gotten aggressive proactive prednisone!

Please be careful with your vision whatever you decide about the Biopsy. Vision needs emergency treatment. I refused the biopsy partly because it was offered weeks after starting prednisolone and partly because my brother suggested it was undesirable - he has GCA too.

Hi Denis when I had my tab O jold blue eyes to keep occupied it was a doodle no pain just a quick Nick all over the docs were very reassuring good luck

I had one recently,no pain and an interesting chat to the surgeon whilst he was doing it. My wife teasing me about my "Frankenstein" look but it soon healed and the hair grew back.

If your vision is blurry have they started steroids? If GCA is a consideration then needs to be treated as soon as possible to prevent loss of of vision.

I’ve had temporal art biopsy twice and each time was relatively easy going. keep us posted! You’ve found the best site for information if you’ve got GCA.

Denis61
Denis61 in reply to PMR2011

I went to see my eye doctor yesterday and he confirmed a cataract in my right eye which will need surgery . Probably caused by Prednisone? Or just age related falling apart !

So relieved It’s not GCA. He said that the prednisone had helped avoid it.

I’ve been on 30mg for 7 weeks.

Today, I had an appointment with my doctor and will try tapering down to 25mg each day.So to avoid a cataract escalating in the other eye too rapidly.

I’m so sorry for all of you in the same or worst boat than I.

Take care

Lee1945
Lee1945 in reply to Denis61

Please be careful not to taper too soon or too fast! Listen to your Consultant or doctor.

Pippah45
Pippah45 in reply to Lee1945

I second what Lee says about tapering slowly - it really is a pain in the proverbial to go back up with the Pred - and I speak from experience! I got to zero once and the WHAM - back to 30 and then 40 for a while. Just getting back to 25 now. In my experience the slower the better - but I have to get back to the GP to order 1mg tablets as my prescription appears to be for 5 mg - easy enough to split to 2.5 ones - but after my roller coaster I would like to reduce by 1s at a time.

Do not be afraid. My daughter was with me when I had it done. She watched while I had it done.

Sorry, wasn’t finished. It was fine. For me actually. Easier than going to the dentist. Didn’t hurt either. I’ll say a prayer. I’m 68. The things we have to do at our age. Mine was negative.

I agree...I’m 62 and it’s all a bit of a shock . ..This aging thing.

Thank you for your thoughts and prayers.

Take care.

An E.N.T. surgeon did mine. If I had to do it over the only request I would make is to just do one side, the worst side, so a year or two later the other side can be one to better reassess how you have come along with treatment.

The biopsy is a cakewalk, and is only sore for a day or two. My biggest problem was healing. They used self-dissolving stitches, which do not work with my chemistry. It was three months until those stitches dissolved, and I picked at them like a monkey the entire time. I have no discernible scars, and can not tell where it was done. You need that defined diagnosis, so gut up, go do it, and get on with the path to getting well.

Denise, there is absolutely nothing to worry about. Like you, I was very worried and the worst part was the waiting around for my 'time' as it seems I was way down the list.

The area is numbed and in a matter of minutes the biopsy is done and you are returned to the ward.

The nurse brought me some soup (as it was already 5 pm by then, and a sandwich and drink.

I then just had to wait for the paperwork and was discharged!!

No pain, no after effects!!

I hope all goes well for you too!

Where are you going for yours??

Not a problem, Denis. Done under local anaesthetic. I watched it on the monitor, even got to see the wiggly little artery removed and wanted to join in conversation between surgeon and assistant talking about their Christmas holidays! A bit uncomfortable at times but no pain. After, a friend and I went to a café to celebrate.

No pain, scar completely disappeared now.

Cheers - from New Zealand.

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