Anyone else had this experience? I think they said the arteritis might have obliterated it but not quite sure what that means.
Temporal Artery Biopsy, just had mine and they co... - PMRGCAuk
Temporal Artery Biopsy, just had mine and they couldn't find it, so they took a tissue sample from the site instead.
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DorsetLadyPMRGCAuk volunteer
What do you mean they couldn’t find it? The artery or the GCA?
So what is the next move?
For info - Unfortunately a biopsy can give a false negative result, but that doesn’t necessarily mean you don’t have it.
It could be because
a) the sample they took does not contain any of the GCA affected cells, they are not spread consistently throughout the artery, but are random, or
b) the Pred has done its job and reduced the cells that were there causing the inflammation/pain.
No artery. They are hoping the shriveled remains may be in the tissue sample.
Okay, haven’t come across that before…..will be interested to hear what happens next.
They've sent the sample to the lab and I wait to hear back from Rheumatology. Will update when I hear anything.
good grief. Glad I've opted out. Inflammation 4 3 months too late after pred. from a reading of 176 so no point . Agree with PMRpro, sounds like they took wrong sample and making excuses. If you have no artery because it has shriveled, have the other ones shriveled also? how far have they shriveled?, if that is so have the organs they are supposed to supply stopped working and if not why not. It sounds like B/S to me.
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I'm afraid being of a very sceptical nature to me that sounds like a get-out from an inexperienced surgeon. It isn't unknown for a vein to be excised in error and the artery does tend to vary in its position.
Not in my case, PMRpro.
A very experienced surgeon did mine and ended up taking "tissue" that the lab said was nerve tissue. I was not on this forum yet when that happened so my reaction was to just let it go and be glad my rhumy diagnosed GCA based on symptoms and history!
The surgeon just said she couldn't find the arteries which I found to be unsettling. My thoughts at the time were "If a SURGEON couldn't find them, they are gone. Am I that damaged that the arteries have disappeared?"
The arteries CAN block entirely and become very difficult to identify - but a lot of good surgeons use ultrasound to find the artery and map it as Snazzy says. Lack of a pulse is a criterion for a GCA suspicion - if there was no identifiable artery that would be the case. The track of the artery can vary a lot.
are we saying therefore that an artery to say the ear could be blocked and now non functional which would possibly explain the serious loss of hearing in my right ear. Maybe a small amount of blood gets through. I have some function but it's much depleted. It was almost non existent at the height of my symptoms and the tinnitus drowned out everything. Now some function has returned but has levelled off. Just interested. Clearly that's what happenes with sight, it stops flowing and the eye "dies" functionally. Scary.
This shows arteries in head that may be affected with GCA. Ear problems are quite common….although not for everyone. It does seem a bit pot luck…my ophthalmic artery in particular and some others were affected but not my temporal artery seemingly
GCA arteries
thanks DL. the puzzle continues. Those arteries and their terminations demonstrate areas where I was constantly massaging to relieve pain. Worked as well temporarily.
healthunlocked.com/pmrgcauk....
The temporal artery is pretty superficial - and that is why it is used because they can get at it and it isn't essential, it tends to supply the scalp and there plenty of other arteries to create a collateral circulation. Other offshoots of the carotid are the ones that matter, supplying the nerves between the ears and the hearing centre and the eyes and the vision centre - lack of blood supply to a nerve doesn't do it any good and once nerves are damaged beyond repair there is no way back.
read it and thanks. Looks like I might have lost that portion of hearing. Has certainly affected my balance a bit and increased the tinnitus a lot. some days more than others. I still hope that the nerve transmission might be tweaked a bit since it has improved considerably from the worst peak of pain. Left is relatively ok save natural ravages of time and abuse.
lack of pulse PMRpro is more than suspicious of GCA surely...sounds terminal to me
Just because you can't feel a pulse at a particular artery doesn't mean you are dead yet!! Low BP can make peripheral pulses very weak, so can narrowed arteries in the legs reduce the pulse at the ankle enough to make it feeble.
Not heard of that. However, I would say that if they find no giant calls they should not take that with any confidence at all. They located mine with ultrasound and then drew it’s course on my skin. It was maxillofacial surgeon.
It was negative after being on Pred but they still treated me as GCA because of the symptoms and rapid response to Pred.
Mine was particularly difficult to find. My rheumatologist was insistent that I have the biopsy, the surgeon was sure I didn't have GCA and didn't see the need. However the biopsy went ahead and the surgeon had a job to find a sample. He managed to get a small sample after a lot of effort and it went to the path lab to be analysed. It was negative but that doesn't necessarily mean I won't have GCA in the future. In Cyprus they don't use ultrasound for GCA biopsies otherwise I would have taken that option.
as we have seen from others still doesn't mean you don't have it. Maybe no cells in that sample if he even got a sample from the correct organ...I think this is a very uncertain method and also messes people about without a definitive answer. A bad procedure.
It is uncertain - but’s it’s all they had prior to ultrasound - which still isn’t that widespread in UK
understood..best they could do, and still so. Still not well thought out though or supervised. Seems hit and miss even finding arteries.
A lot if it’s hit & miss!
like I said in an earlier post. I'm glad I've been lucky or blessed with a constitution and attitude to survive in recovering from things over the years because the difference between someone surviving and going under seems very slim at times.
I had the biopsy which was negative. I also had MRI and CT scan of the head. I ended up having a full body PetCTscan which showed Takayasu Arteritis and not GCA.
My wife taking steroid and acterma from last 3 months for GCA on basis of symptoms. She has not done biopsy. She is going for pet scan whole body tomorrow, do you think , dr will able to confirm if it GCA or not ?
I had a biopsy and they couldn’t confirm that I had GCA and explained that the artery had spaces where the GCA wasn’t present and the biopsy could have hit one of those, also my GP gave me prednisolone before the biopsy happened-understandably! I also had a chronically painful jaw which stopped me eating. The consultant told me that they were going to treat me for GCA as it was the safest thing to do as my painful jaw was a symptom specific to GCA.
Thank goodness for sensible rheumies!!!
Hi, Oh wow, sounds terrible, I had ultrasound scan, the first time they couldn’t find anything, I had been on high dose pred for some time, however, on several occasions after this when I was having flares they found the problem.
Maybe ultra sound scan is better.
Hope they sort it out for you.
Take care.
Xx
Haven’t heard that before. I had positive Ultra Sound and negative TAB 4 days later telling me they couldn’t get enough of the inflamed bit. Doesn’t mean you haven’t got GCA though. When they were trying to find it they prodded and asked me if I could feel any discomfort. It’s not the best way to do it. Be better when US is more readily available.
the more I read of biopsies the more sceptical I become of its efficacy as a diagnostic. Seems so hit and miss for the risk of surgery. definitely going to skip this. Anyway as I said earlier, even the rheumatologist thinks too much time and pred has flowed to get a reasonable reading.
There are cases where they do get a positive diagnosis for GCA but once you’re on pred it’s going to mask the diagnosis. Symptoms are key. Best wishes.
The times and doses that mess it up are disputed - and the problem is that as it was the "gold standard" it is a criterion for inclusion in a study or for certain treatments. When it is positive it is 100% certainty you have GCA - but being negative doesn't mean you don't have it for several reasons.
In the meantime u/s has been demonstrated to be as reliable in the diagnosis but even it misses some cases and isn't as widely available as yet.
TCZ a particular one. Needs a positive for use in reduction of pred. Too eqpensive without a positive.a moving feast of discovery and experiment. Have you seen how they prepare guinea pigs for cooking in South America?
Wrapped in clay you mean? Or am I thinking of hedgehogs ...
Hedgehogs….
hedgehogs. When cooked pull open and all theb spines and skin in cay. No they pin it flat splayed out head tail all and kook as whole animal.
The version I just found had a wooden pole stuck where the sun don't shine to act as a spit ...
for GP sounds about right but usually spread and pinned
“GP” on here usually means something entirely different…..hope you haven’t frightened any two legged ones!
might help them understand how some feel after they misdiagnose or tell people that it is psychosomatic if it were reserved as a procedure for them
