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sick n tired
03-13-2009, 11:36 PM
Has anyone ever had temporal arteritis or been biopsied for it? I looked it up and it seems that mostly very elderly ladies are the ones who get this...it can cause instant and irreversable blindness and/or stroke...
So...a month ago I told the doctor I was having shooting pains up the side of my face and up onto my head...The pain seemed to start a few weeks earlier right in front of my ear so I thought It was tmj or sinus infection as that is one of the things I had at the time.
So I looked up the biopsy and it shouldn't be anything bad...just a cm incision under local and off you go, but my rheumo says he wants at least 4 cm...that is up the side of my face and I probably don't even have it...I knew a vascular surgeon who I trusted but he is refusing to do the surgery now because my rheummo pissed him off...he doesn't think it should be that much of the artery to biopsy, especially if I probably don't have it anyways....I am going to have to have a surgeon I really don't care for even if he is a good one and I am upset...so all in all it has been a crappy day...I don't have a high SED rate, either, and that is one of the diagnostic markers....My doc got all tense with me over the phone when I questioned him why I need this...he said he was totally ok with me to get another opinion...only it would be a 3rd one as the neurologist he sent me to said it would be a good idea to rule this out...it is my face that is going to be disfigured...not his..I feel like I am between a rock and a hard place. I really don't want to have this...but I also know I will lose the rheumatologist if I don't...he hasn't said it but he as a little upset...perhaps with his "discussion" with my surgeon...:grumpy:

BonusMom
03-14-2009, 04:13 AM
Ican totally understand why you're conflicted. It's like my PCP disagreeing with my rheumy. I wish these docs would check their egos at the door since it seems that that causes us patients the most distress.

So sorry that you had a crummy day.

Angel Oliver
03-14-2009, 06:01 AM
Oh wow, i just read this. Isnt it strange i am having those pains as well. I have never heard of this.
I so realise what a position they have put you in. If it was me this is how i would think.
After all the Doctors i have encountered recently, i know they can bully you into things. You try them, they dont work, you tell the Doctor they do not listen. Now i do know some Doctors do know what they are doing.They seem to have this attitude....they know best.All politics.They forget the fear and stress the patient is under. This is a big procedure.If i were you i would call this Doctor back, just say you are very anxious and not very sure about having this done. Tell him you realise that you may need this proceedure done to find out if it is the right diagnosis.But explain again until he 'hears' you...THIS IS CAUSING YOU SO MUCH ANXIETY N FEAR!!!! Ask him to reassure you. If you have ANY doubt....do not do it. I know you do not want to loose this good Rhemi, but what is more important? Ask is this scar going to be visible? Tell him your worries on how this scar will make you feel. Keep repeating, ''reassure me and convince me i really need this procedure''. Try and make him hear you. If any doubts, or he doesnt listen, maybe talk it through with someone close and ask them to call on your behalf. It sounds like you do need a procedure to find out this diagnosis, but it scares me when you think you have no other option because you do not want to loose this rheumi. If they sound unsure, i would feel unsure too, so i fully understand you.
Let me know how you get on. Ive waffled on again sorry, but hope you see what im trying to say.

love
Angel.xxxx

mountaindreamer
03-14-2009, 09:57 AM
hi SIT

i too ran into a conflict with two drs. it was over my pain meds, and i am sure that one dr called the other on the carpet about the medication. I had a couple of awkward appointments, and considered changing drs. but i really liked both of them. so, i decided to approach each dr. and see if i could straighten everything out. Luckily, both drs. were open to my attempts, and everything has straightened out.

If you like the drs., you might try calling their secretaray or nurse, explain what has happened, and see what they recommend that you do to get things back on track. don't know if it will work, but it was the secretaries that helped me resolve the conflict.

good luck,

AyahsClan
03-14-2009, 06:07 PM
My mother had polymalgia reumatica which can cause giant cell or temporal arteritus. I can't remember why she did not have the biopsy, she did have a high sed rate.

You may want to research trigimineal neuralgia. What you described may be trigimineal neuralgia, it is also called tic doloro (sp?) I've had a couple bouts with it. It is extremely painful but can vary in the degree of pain. It is nick named "the suicide syndrome" because when it is flaring full force the pain is beyond words terrible.

It is inflammation of the trigimineal nerve that comes out of the side of your skull down to the jaw. My teeth are bad from steriods and tend to absess. That can trigger it in me. I had to take high doses of steroids, neurontin, and anti-inflamatories to get it under control. I have a sarong draped over on my head right now to keep the side of my face warm because I have a molar inflaming the nerve. They have to put me under to pull teeth because of it.

BonusMom
03-16-2009, 09:15 AM
I was reading about this in The Lupus Book by Daniel Wallace on my commute to work this morning. I'd never paid much attention to the particular area in the book that discussed temporal arteritis because I'd never heard of it before (and sure wish you weren't going through it now).

Anyway, why is your rheumy insisting a 4 cm incision instead of just one cm? Is that so he can get a better (larger) sample to confirm the diagnosis?

I'm really sorry that you don't like the surgeon that is available/willing to do the procedure. I understand doctors are busy, but would it kill them to have good bedside manner? I firmly believe that if people who are interested in medicine lack compassion, they should go in to research vs. patient care. But, that's just me.

I'm really sorry that you're having to go through yet another challenge, SNT. Give those grandbabies an extra hug today--it'll be good for both of you!

sick n tired
03-16-2009, 09:23 AM
Thank you all for your concern...The doctor wants a 4 cm because he said that the disease or whatever they are looking for can skip and not be in certain parts of the artery but be in other parts. The other surgeon has the personality of a mop. There was inherently nothing wrong with him, just cold. I am just upset that none of my doctors can play nicely in the sandbox...my pcp and rheumy was the first to have problems with each other. Rheumy wants me to find someone else...why? he doesn't seem to like anyone I choose. My pcp said that rheumy's in general tend to have a superior attitude and/or they are just plain weird and he doesn't like to even deal with them.