Temperal biopsy

[Sharice21]

Hi🥰I had a temperal biopsy a week ago and even though all drs have made it sound like its not a big deal,my head is aching more than usual ,got burning feeling over scalp occasionally and extremely sore behind that ear,the wound looks fine though,any one else felt like this after??

[DorsetLady PMRGCAuk volunteer]

Hi,

Looking at previous post you say you had Pred for one day 3 months ago, and none since...is that still correct? If so, then maybe your symptoms are actually GCA related and nothing to do with the biopsy.

You need to discuss with Dr, if GCA is suspected (albeit not proven) you really should be on Pred at some level.

[Sharice21 in reply to DorsetLady]

Hi yes I only had prednisone for 1 day and then they said I didnt need it ,now 3 months later there not giving me any answers but sending me for various bloods ,the biopsy and pet scan

[SnazzyD]

Hello there, have you seen the YouTube video of the procedure? If not, you would see it isn’t just a little prick with a needle and suck a bit out it is actually a minor operation going through a few layers. These layers need time to heal and wounds take months and months to mature. The inflammatory process will still be in action a week later and the dissolving sutures underneath won’t even be dissolved yet. Don’t forget nerves will have been cut which may or may not recover completely as nerves are a funny beast. So, yes, it will hurt. Mine didn’t feel right for over a year and seems to have a flare up when I was reducing along with the other withdrawal symptoms. What you need to flag up is increasing pain, oozing, increasing redness or swelling and fever or chills. Yes, surgeons in my experience make things sound like it’s a piece of cake and generally they don’t see normal aftercare.

[Sharice21 in reply to SnazzyD]

Hi thanks for your input ,that's very helpful to know it's not just me,the wound looks perfect so no worries there.sometimes I think my anxiety gets the better of me but cos it's my head I thought I'd ask you lovely people who have had it previously

[YuliK in reply to SnazzyD]

Snazzy your post made me smile. 😁

Have you not heard ,that ignorance is bliss ?🤣

TMI.

YuliK. 😷

[SnazzyD in reply to YuliK]

Oh yes, it’s not for the faint hearted. I wasn’t suggesting it’s a must do if you are about about to have someone furtle about in your head. If you’re a weirdo like me you need to know exactly to be able to walk through the procedure while it’s being done. I asked the surgeon to talk about it like I was a med student. I think he thought I was bonkers. I guess it’s years of watching procedures during work and a way of dissociation from the actual thing being on me.

[Temoral in reply to SnazzyD]

I had mine done at a 'teaching hospital ' so could hear all the guidance being given...which was both educational and disconcerting!! Stay positive and practice relaxing deeply before and during. You can find the strength...best wishes.

[Marijo1951]

The operation isn't a complete doddle. I remember there were two doctors and four nurses when I had mine, which was a bit unnerving for something so minor. One of the nurses was obviously there just to hold my hand when I yelped. One of the doctors explained that they can anaesthetise the area surrounding the artery, but not the artery itself as it would make it collapse.

For me the area was sore for several weeks afterwards, but I didn't experience the headaches you describe - but then I was on 60 mg of pred per day. I think you should follow Dorset Lady's advice and urgently explore the possibilities of GCA being present.

[Sharice21 in reply to Marijo1951]

Thanks for your reply,I've tried to account for the fact I had a headache when they did it and kind of expected it to worsen from the feeling of my brains being pulled out😳I have eye hospital friday morning about my eye that triggered all this off in the first place so I'll talk to them about it,its impossible to get hold of the consultant that raised the biopsy and my gp is an open book they'll just say it's going to give you a headache 🙄

[Marijo1951 in reply to Sharice21]

I hope the eye hospital take you seriously and can establish whether or not you have GCA. Given their expertise they should take seriously the possibility of your eyesight being at risk. If you didn't have this appointment, I'd say go to A&E at your rheumy's hospital, quote your hospital number and say you need to see somebody from the rheumy dept urgently.

[jinasc in reply to Marijo1951]

I like that, it is just Wednesday and that is a long wait till Friday with suspected GCA and there is no way I would be waiting till Friday. Sight once gone is gone.

So Sharice, I would be going to A&E now.

[Marijo1951 in reply to jinasc]

Jinasc might well be right. Maybe you should go along there now. I remember when I had a serious flare of GCA symptoms (after I had been diagnosed), and went to A&E, the rheumy I saw also got advice from one of his ophthalmology colleagues.

[Sharice21 in reply to Marijo1951]

I've just phoned rheumatologist dept and she said it's not unusual to get a secondary headache ,my results are not back yet and shes going to leave a message in rheumatologist diary

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

As you say eye hospital more switched on to eye sight loss and GCA - my local department was superb!

[SnazzyD in reply to Marijo1951]

Really, if they are going so far as to ask for a biopsy they should be treating it as GCA. Normally the guidelines say that if there is a strong suspicion that it is GCA treatment should be started before the biopsy even if it might skew the results. Even if the result is negative it still doesn’t change the management and treatment goes ahead just in case it is a false negative which happens too many times to be sure. That was me, a negative test but still treated as GCA based on symptoms alone. It begs the question that if they are happy to tip you into the void between investigations without steroid cover, why on Earth are they putting you through this invasive procedure with its own risks if they don’t think you need steroid protection?

[Sharice21 in reply to SnazzyD]

I have no idea to be honest ,I'm not over familiar with GCA the first I heard a out it was 3 months ago,and believe me I'm under so many consultants now it's getting abit crazy

[Temoral in reply to SnazzyD]

Agreed....had mine after starting steroids.

[PMRpro Ambassador]

When you think how long a paper cut can hurt ... Those doctors have never been on the receiving end of a biopsy either!

They obviously thought there was a chance of GCA or they wouldn't have done the biopsy. So why did they say you didn't need pred???

[Sharice21 in reply to PMRpro]

A&E put me on prednisolone as a precaution, The neurologist the next day after doing a ct scan came to the conclusion it was migraines and took me off the steroids.Rhuematology check up after 3 months because I have shoulder issues too has asked for all this to be done but doesnt seem to want to give me steroids until she gets all her results and basically told me the eye specialist may put me on steroids or something similar hense why I said I'll chat with them on friday

[YuliK]

//though all drs have made it sound like it’s not a big deal //

Let’s face it Sharice, it’s not open heart surgery…🥴

Temporal biopsy is not a big deal. It’s scary for some, because of the possible positive results,

Many folks here have passed a temporal biopsy..without any pains or problems.

YuliK 😷

[DorsetLady PMRGCAuk volunteer in reply to YuliK]

A TA may not be in the same league as heart surgery for sure, but that doesn’t mean it isn’t uncomfortable or scary for some.

People have different pain and capability levels…

[YuliK in reply to DorsetLady]

Totally agree with you DL, but scaring the pants off someone before the procedure

isn’t good medical practice at all. ( re the drs )

As you pointed out, not everyone has the same pain levels. That’s why I always try to take the stress level out of others.

YuliK 😳

[DorsetLady PMRGCAuk volunteer in reply to YuliK]

Trouble is - doctors aren’t on the receiving end….and as SnazzyD says don’t necessarily see the recovery process. Easy to be blasé about it then.

[YuliK in reply to DorsetLady]

Yes, unfortunately there are Doctors who give no follow up to their patients.

I understand, that many courses are now being added to the Medical Students degree, which they should adhere to them …teaching being more empathic to their patients.

Today’s HR ( Human Resources) are looking for EQ ( emotional intelligence) more than IQ. …

So important in today’s society.

[SnazzyD]

I forgot to say during the procedure I had an intense burning in the scalp round the back of my head and it was a bit like it for a few weeks after.

[Sharice21 in reply to SnazzyD]

Yes I have that with the occasional jab in the top of the head

[cycli in reply to Sharice21]

sounds to me like you've got GCA..don't mess around and get out of the pram...You need to be on pred. asap. Most medics haven't a clue how you feel , I think they dissociate themselves probably for emotional defense. Don't risk sight because they are unsure.

[SnazzyD in reply to Sharice21]

In your case, given that your diagnosis is in the air and looks GCA-like I wouldn’t put it all down to the biopsy. Do report it.

[YuliK]

Many Doctors are going more for UltraSound to detect GCA.

Less invasive than a temporal biopsy

ncbi.nlm.nih.gov/pmc/articl...

YuliK 😷