Temporal artery biopsy : I am going to have this... - PMRGCAuk

PMRGCAuk
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Temporal artery biopsy

Debue
Debue

I am going to have this done and am very concerned about the results and effects of the biopsy procedure.

40 Replies
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Bless you Debue! People will be along who have had the procedure to tell you about their experience I am sure.

The thing that would concern me ( I have PMR) if I have to have one in the future, is that all it would tell me ,is that I do or do not have GCA in that section of my temporal artery. I would not be told that I was definitively in the clear. The treatment option would be the same if I were diagnosed on my symptom picture alone ie a large dose of Pred depending on the severity of my symptoms.

On balance though as long as I had faith in my doctors I would far rather go through this biopsy than face the consequences of GCA untreated.

I am a complete coward but seem to be getting tougher as the years and the experiences go on. I went through 3 courses of meditation in the past and now seem to be able to float away from my body during stressful procedures. The trouble is there is always a kindly nurse bringing me back by asking if I am alright! Good luck, breathe steadily and deeply. I guess it is mainly the thought that scares us. 🌸

Debue
Debue in reply to SheffieldJane

What's GCA?

SheffieldJane
SheffieldJane in reply to Debue

Giant Cell Arteritis. I had assumed that you were a PMR - Polymyalgia Rheumatica - sufferer where GCA was suspected, hence the biopsy to see if your temporal artery is affected by this closely linked condition.

Is that the situation you are presently in?

This is what happens when one Pred head speaks to another. Pred head is the brain fog that often goes with this condition and is caused by Prednisone. It certainly describes me today. I really wanted to say, don't be scared, it will be ok, you'll see. 🌼

Debue
Debue in reply to SheffieldJane

Lol...thank you ....you made me laugh ...made my day...

Debue
Debue in reply to SheffieldJane

Pred has given me severe constipation , is That normal? How can I relieve that with no side effects?

SnazzyD
SnazzyD in reply to Debue

Yes, it slowed my gut down to a standstill. Two things that have helped are the mountains vegetable matter I eat in my low carb diet (to prevent weight gain and diabetes) and drinking loads of water. If I eat much salt at all the I get fluid retention in the tissues which makes the constipation worse. I guess that's because the body is drawing as much water away from the bowel as it can to keep the blood concentration right.

Debue
Debue in reply to SnazzyD

Not familiar with mountain vegetables. Can you name some...

SnazzyD
SnazzyD in reply to Debue

Whoops! Mountains OF vegetables!

Debue
Debue in reply to SheffieldJane

Thank you for the blessings and information

PMRpro
PMRproAmbassador

What are you concerned about in particular?

Debue
Debue in reply to PMRpro

I'm concerned with blood clots

SnazzyD
SnazzyD in reply to Debue

Do you mean blood clots due to the procedure?

Debue
Debue in reply to SnazzyD

Yes, blood clots due yo procedure?

SnazzyD
SnazzyD in reply to Debue

Hi again,

Well, as to actual rates that occur, you'll need to talk to the doc. However, I haven't read that is a big complication so far. From a logical point of view looking at the YouTube video of the procedure, I can't really see how it would happen in any big way. The reason is that the little branch is tied off at both ends before it is cut out on the inside of each knot. The artery end is lose to the 'main line', so I can't see any sluggish backwater of blood being able to form a clot that would would float off back into the main circulation. The other end artery tails off into even smaller arterioles and eventually hair like capillaries before they widen out into veins to return the blood to the heart. I guess you could get some residual blood in these tiny vessels but any clot would be minuscule and the pressure not great enough by then to push it through the system. Clots are generally a bad thing when they are large enough to block something vital like an organ, limb or brain. For this they have to be big enough and mobile. You might want to ask the doc for a scenario where this might happen if at all. I'd say the bigger risk is bleeding which is easier to spot and deal with.

Debue
Debue in reply to SnazzyD

Thank you ....my procedure is tomorrow was postponed. I have been on pred now for 2 weeks , wonder g if tgey will change the treatment. Thank you again. I will keep you posted on results and experience.

Hi,

I had mine done 13 weeks ago. The procedure took well under an hour. The local anaesthetic done in about four shots in different places, stung for about 10 seconds and then it was numb. I could not feel the doc doing anything in the area except the odd painless tug. I did have aching around the back of my head nowhere near the wound which he said was unusual. It was better than I thought and others have said that too.

Because I'm a bit odd I expect, I had to watch it on YouTube first and made him describe the procedure as if I was a medical student. I think he thought I was mad!

The scar is in my hair and can no longer be found. The shaved area grew back quite quickly, though the rest of my hair largely covered it anyway. The closure was dissolving sutures that drop off (had to pick the last bits off about 6weeks later) and glue. I get twinges and aching there during steroid withdrawal. You can get all sorts of odd feelings like creepy crawlies and pin pricks at odd times for weeks afterwards. This isn't bad but some are worried by it if they aren't expecting it. The ouchy post op pain usually lasts about 48 hours and then it's tender if you poke it.

Although I knew it might give a false negative as many do, especially after steroids have started, I had it done because a positive result is definitely positive. I would then know it was worth the two years plus of steroids and upset. I think this was the main reason the Rheumy wanted it because I am supposedly "too young" at 54 to have it. It was negative and the treatment has been no different to a positive result. Not sure what decision I'd make again, even without hindsight. At the time the clock was ticking with the Prednisolone and I was in shock, so I just went for it.

They take a piece of an artery branch away so it no longer functions, so it isn't like a usual biopsy where a bit of something is taken away, leaving the rest functioning normally. The main artery is untouched. The idea is that there are enough other pipes to make up for the loss of that branch. Talk through the rates of infection, nerve damage etc before, as with any surgical procedure.

Good luck!

Debue
Debue in reply to SnazzyD

Thank you , very informative

PMRpro
PMRproAmbassador in reply to SnazzyD

Come on Snazzy - don't poke, it'll never get better ;-)

SnazzyD
SnazzyD in reply to PMRpro

...but, but.. it needs to poke to see if it's getting better!

PMRpro
PMRproAmbassador in reply to SnazzyD

That well-known medical procedure...

That was really clear and helpful Snazzy. I can just imagine how it would be now. Thank you. Fingers crossed I never need it though.

Mojo63
Mojo63 in reply to SnazzyD

I have replied to Debut and I have to say your description of the procedure is correct. But the difference I had in my procedure that I had a red flash & pain over the left eye. But afterwards I was a mess could not walk properly, keep the slave in my mouth, shaking. Very tired all the time. And all that upset with no result! It took me 4 ars to get better.

Please read my blog 'Sixteen Months in'

I liked reading your experience!

Debue and all others who have contributed to this post.

I would tell you about mine which was positive. I've got a scar visible on my temple and the stitches had to be taken out by GP Nurse a week after the operation. But I won't tell you the details don't want to put you off. A idiosyncracy about my make-up is that local anaesthetics don't work until 45-minutes have passed. Guess how long the proccedure takes, 45-minutes, so I was awake for all the cutting, prodding and stitching and the anaesthetic kicked-in in the taxi on the way home. Better to have it done so you are sure the GCA is present. Hope yours goes alright.

Best wishes

Colin

SnazzyD
SnazzyD in reply to GCA1947

Your forehead? Why there?

Yes, a very few people don't respond to local anaesthetic or need a bigger dose than others. The patient needs to make sure they tell the doc if it isn't comfortable and refuse to let them to start until it is numb. That is unless you're like my friend who is one of those, and now doesn't bother with local anaesthetic for anything, even major dentistry! 😮

Hi Debue - I was diagnosed with suspected GCA having been admitted to hospital nearly a year ago now. I was told they wanted to do a Temporal Biopsy and was dreading it but it was nothing like as horrid as I thought it might be. They gave me a local anaesthetic and it then took about 20 min, so no pain but just anxiety! It was a bit sore for a couple of days and that was all. The result came back positive which in some respect was good because they then new exactly what treatment was needed, you don't want to be on high steroids unless absolutely necessary.

The only side effect I had was my eyebrow drooped for a few weeks but then went back to normal, apparently this occasionally happens so if it does don't worry.

So God Luck.

Thank you

Hi Debue, I had the procedure in August 2016 and had no problems. It healed well with no pain and the scar (if there is one) is in the hairline. They prescribed 60 mg of Prednisone and it helped...a lot! Good luck.

Debue
Debue in reply to enan-illuc

Thank you, had mine yesterday some pain on left temple. 40mg pred...hoping I could get weaned off with positive results.

Hi Debue, I watched the biopsy on u tube lol so as I lay there for just over an hour I kept asking the surgeon what point he was at !! He even asked me if I wanted music on and I said yes lol he took his time that's why it was so long and only shaved the hair in the spot he wanted.

But don't be afraid they know what their doing, and good luck

I was diagnosed with Giant Cell in December 2014, had a temporal artery biopsy on both sides Dec 31/14. My experience was that the procedure was a "non event" I have had more painful and stress full sessions in the dentist chair. The vascular surgeon, myself and my husband being the only ones present as the Ambulatory Care section of the hospital was closed, it being a holiday (New Year's Eve). There were no nurses or assistances available, my husband acted as the assistant. It took an hour and I was awake the entire time having had just a needle for pain on each side of my forehead. The only part that made me a little squeamish was when I could feel him pulling to get enough artery to cut a section for the biopsy. My surgeon predicted that my results would be positive as he said he had done so many that he could tell from the look of the specimen, and the lab confirmed with a positive result. I was given an Rx for pain afterwards but did not have to use it. I hope your experience is as positive as mine

Then came PMR diagnosis in April 2016. I would have a temporal artery biopsy once a week instead of having to live with this horrible condition and taking prednisone for what now seems forever, best wishes to you, I hope you have a good support system.

Debue
Debue in reply to Drugmart45

Would you know ...when I can wash my hair and should I use any specific shampoo or rinse. I still have the stitches on my temple. It's been 60 hrs since surgery.

Drugmart45
Drugmart45 in reply to Debue

I washed my hair in the shower the next day, just a tape over the stitches, and used my regular shampoo. Sticks were taken out 5 days later. Had no problems.

Don't have

enough this done please! The infection in the system only appears say every 2ft then every 4ft and so on ......... so they are exceeding lucky to get the right spot! Please read my blog

Sixteen Months In' I started with this in 2011

After being clear for 23months the GCA came back in March this year.

Please don't have procedure.

Please contact me if you need a chat

Maureen

Debue
Debue in reply to Mojo63

Too late already had it done yesterday

PMRpro
PMRproAmbassador in reply to Mojo63

Please don't talk rubbish. It isn't an infection and it doesn't only "appear every 2ft, every 4 ft and so on". I have no idea where you got that information but no-one would have done the sort of study that would show that. Have you ever tried to dissect out an artery?

Debue
Debue in reply to PMRpro

Based on the 2ft - 4ft dialog I was wondering why they would even do a TAB if they are taking a chance of an incorrect diagnosis; doesn't make sense. On the other hand, just want to add that I have developed a UTI and have taken antibiotics but they have not helped. Do you think pred are the cause that the antibiotics haven't helped the UTI?

PMRpro
PMRproAmbassador in reply to Debue

It possibly isn't a UTI - did you have a urine culture done? Or if it is a UTI it was the wrong antibiotic - the main reason you need a culture done.

But both PMR and pred can contribute to irritable bladder syndrome where you can have all the symptoms of a UTI without a bacterial infection. If you are on calcium tablets that can also form grit in your urine if you are on too high a dose or not drinking lots so that your urine becomes concentrated.

Debue
Debue in reply to PMRpro

Had urine culture done...thank you for good info.

Mojo63
Mojo63 in reply to Mojo63

I only gave that as easy example. I was told that, as I was given a negative result 7 years ago. But I had the symptoms going blind, headache, infection rate high. This negative result was explained to myself & husband.

It was no problem I had it done under General Anesthesia no pain and can't see the incision. Very little hair shaved. The Dr was perfect! Excellent bedside manners! Now just a matter of waiting for results and then treatment. I am feeling well. Thank the Lord and a great Dr.

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