Topic: When do we say enough is enough

I had a not-so-good wire insertion, and have a PTSD-like syndrome.  (I didn't have a clue about my PTSD-like syndrome until several months after my wire insertion.) 

I work at my hospital, and at my place, I was told you can't have IV sedation/analgesic during the (for me mammo-guided) wire insertion because there is no RN present - there is just a radiology tech and a doctor-both of which are going in and out the door all the time. 

My friend was a nurse who worked in the pre- and postop surgical areas.  She said they used to not give IV sedation/analgesia for colonoscopies, but that finally changed when they had too many complaints.

I wrote 2 letters to the radiologist.  I did a survey here to see how common my reaction was.  (About  25% of the posters  who took my survey said they did not have injectable anesthesia beforehand, and had a pain score of over 4/10.  But the numbers don't matter.  If there is 1 out of 1 million people who have pain, they should treat that person with pain during the procedure, and check that their pain was down to a reasonable level.) Several other posters also said they wrote letters.  I was the only one to get any kind of response.  I probably got a response only because I was an employee.  He left a message on my answering machine saying "Yes, the patient experience is important, but I'd have to take the time to add sodium bicarbonate to the <local anesthetic>."

I tried to talk to my breast surgeon, who only said wire insertion was  done in a different department (radiology).  She wouldn't even take 5 seconds to say 'I'm sorry this happened to you.'

I'm sure its a matter of time and resources.   The next time I had a mammo-guided biopsy, I  was so frightened, I pulled out of the mammo machine - they had to hold me in.

I don't know how to change the system.  My nurse friend used to say 'Every procedure should be a painless procedure.'  I am sure my pain score would have been lower if the radiologist would have asked about my pain after he gave me the injectable shot; if he would have somehow tried to relate to me.

Luckily, on my next biopsies, the radiologist I got was more open to using liberal amounts of anesthetic.

I decided that if I ever have to have the procedure again, for myself, I will bring a set of bells.  I will hold those in my hand, and will tell them that IF I have substantial pain, I'm going to ring those bells until they get my pain score down to a moderate level. 

In the meantime, I also saw a cognitive psychologist who gave me lessons in biofeedback.  This takes some time and money.

I don't know the solution.  I don't know if you could get IV sedation/analgesia if you paid out of pocket for an RN if insurance would not cover.   I don't know if, as mawhinney implied, for an insurance company to cover, you'd need to formally document your panic attacks (i.e. have them well documented by a mental health practitioner.) That would probably be a minimum.  I wish I had a solution for you.

I don't understand I had a biopsy with wire localization,, it didn;t hurt at all I didn;t even feel it and when I went into surgery I refused anethesia,, It felt like a quick pinch but that was it, and I suffer from anxiety.

BabyLemp1,

It sounds like you already know the answer to your question.     You are obviously a very strong woman who demands a say regarding your treatment.  (I saw a study somewhere that women who push back a little had better outcomes than those who just go along with everything that is suggested - but I can't remember where I saw it -  anyone else remember seeing it?)   

I had an ultrasound guided biopsy when I was dx. Then they wanted to give me a mammogram right after the procedure. (Morons!  Poke a hole in my tumor and then pop it like pimple so cancer cells  spread into my bloodstream and lymph? No way! Of course they blah blah blahed about how that doesn't happen - I sat there while they got it all off their chests and  then just told them, "no, I'm not doing that." )   

I hope you find another facility that will give you the procedure you're most comforatable with very soon.  Prayers for you! 

I will never have a wire localization again. I too have PTSD and came so close to blacking out while trapped in that contraption. I empathize with all who have had bad experiences with biopsies.

You know, I thought i was just going to read this and go on.BUT.......I don't suffer from any panic....conditions.  However, my biopsy was a piece of cake. Okay, so I found i had to have a partial MX.  But i was going to be put out of course, because they considered this major surgery.

 What they didn't tell me was about the dye being put in around the nipple in 4 different spots half by the radiologist, which didn't hurt, and half by a student, which only shock i'm sure kept me still while she did it!  and they sure as heck didn't tell me about the wire thingy with ultrasound that the student was going to be do. I have MS and i KNOW I have a high pain tolerance.   But let me tell you that was going above and beyond. 

I'm glad you brought it up.  Then there was the two hour wait before surgery when finally they give you the preop medicine before the who cares if you put me to sleep medication. 

Because of the wire localization procedure i am having a BiMX in January.  I will never go through that again, ever.  My sisters have LCIS, two of them, and because they just went along, they kept having these procedures. One has had 4, the other 5.  They are on tamoxifen and have absolutely deformed breasts.  But they are quite a bit older than me and it just happened, you know what i mean by that?

Since my family history is filled with bc I'm just going for broke.  Half of my left breast is gone, the top half, but i do understand, or at one time i did, why they didn't take the whole thing then, since it took the nipple, aerola, etc.  Since i've already gone through that and had the SLN that one's a goner.  They told me i have suspicious areas in my other breast which need biopsied.  NO WAY! It's a goner.  They don't have to do the wire thing with a MX, I asked.  I may have the dye for SLN, but if so, okay, i don't like it, but i can deal.  I can even deal with a student, because i do have a high pain level and they do have to learn.  But the wire, oh no. No way.

I understand all the reasons, I do.  It's also why i am having two MX and no more biopsies, even tho i don't mind those.  But if they lead to excisional, and when they say several other areas, it's not even a question. 

So if i'm not afraid of pain, not PTSD, not anxiety ridden, and would rather have a MX than a wire localization then ladies with those problems my heart really really goes out to you. Even if i do understand the reasons; medically and cost.

I've been a social worker/therapist for thirty years.  I can't believe that exceptions cannot be made and some procedures handled differently with input from psychiatrists.  These are medical problems.  That's why there are ICD codes to describe them.  There are some things that i have to be medicated for because of uncontrollable muscle spasms.  I have to think that there is a medical bias against the psychiatric diagnoses here.

You have had four children.  We women know that means you are not a wimp, even though you are being treated like one. If they were treating you wholistically, as a whole person and not just a breast, they would be taking into account all your medical problems here, not just one. Why am i treated differently for involuntarily muscle spasms (can't really think of an example, but there has been), but you aren't for a legitimate diagnosed condition?  I truly think it is because of it being diagnosed from a psychiatrist and not an MD.

I am not one to cry out PROFILING at any old thing. But as much as they say differently I do believe there is predjudical treatment of the mentally ill, which is mainly normal conditions that are just a little farther down the line from norm than the norm.  The majority of mental illnesses are misfired brain systems, or chemical imbalances in the brain.  As long as this continues to be misunderstood and mental illness immediately brings to mind a paranoid schizophrenic in a delusional state who is not medicated (which is about the only time they are dangerous, which means seldom), then medical problems like yours will not be treated correctly or paid for by insurance and that's a damn shame.I would consider your psychiatrist who medicates you (not the therapist who doesn't) as your best friend in this fight of yours and many others.

As for me? Should the wire localization procedure be such an ordeal i refuse to go through it again?  I don't think so.  As someone above mentioned, maybe enough complaints will be made it will be treated as colonoscopies.  I was just so shocked and ignorant about what was going to happen I didn't have time to do anything.  Nobody told me. Thanks for posting about this. I will write a letter and do my part to try and get this procedure handled as the colonoscopies are.

Marian

Leaf,

I live in a small town and even here they use IV meds....for colonoscopies.  I really do think you're correct, that until women who have issues with the procedure let it be known, nothing will be done. But in the meantime, don't you think total diagnosis as the person as a whole should be taken into account? I feel like it's just fair and adequate medical practice to do so.

I really do think if the co-diagnoses was not a so called "mental one" it would be.  I also think a good psychiatrist could easily make the case for his client.

The case you just mentioned is appalling!

I know what you mean about people coming in and out, but truthfully I've only experienced that in a teaching hospital, like Kansas University of Medical Science.  Even then I've noticed they always introduce.

Do you think it will help for people to mention their concerns?  I wonder how long it took for the colonoscopy procedure to change?

I realize you said most rated it at low, but I have to say I found it rather barbaric.  I just "acted stoic" but honestly I was horrified and so struck by it that it doesn't concern me at all to skip this procedure and go straight MX.  I probably would have anyway, but that was a huge deciding factor!

Maybe if i had known about it before hand it would have helped, I just don't know.  But i cannot imagine suffering from anxiety or PTSD and going through with it!

I am truly sorry for the experiences some of you  went through, though. 

Luck to us all,

Marian

I hate that so many of us have had such bad experiences with this.  But, I am glad to see people taking time to write about it, at lease we know we're not alone and not just being big babies about it.  I found that when you ask any medical professional about the procedure, they all say "I haven't had it done myself, but I hear it's no big deal" (funny how they all seem to use the exact same words - is it in the manual or something?).  Then afterwards, when you tell them how horrible it was, they look at you as if you're nuts and say "OF COURSE IT'S PAINFUL!".  Here's my suggestion for the medical community... if it's so "not a big deal", then go through it yourself as part of your training.  

I'm going to write a letter today to the radiology department that did my procedure and my surgeon, and include a printout of this thread. 

Well, that's scary as hell. I'm waiting biopsy results. They were only able to do one biopsy instead of the 2-3 they preferred because I fainted. I warned them beforehand that I have a tendency to black out easily. Take getting my blood drawn for example. It doesn't hurt, but I can't control my body. As much as I try to focus on other things, if my brain decides it's time to go, there's nothing I can do to stop it.

The doctors said the procedure doesn't hurt much and I wouldn't faint because I was lying down. *ahem*  I fainted at least twice. And it wasn't because it hurt. It felt uncomfortable, but it wasn't unbearable pain. My body just reacts poorly to procedures. I know it's mental. I'm going to attempt to take a xanax if I have to have another biopsy done, but no guarantee that will work.

And that's one of the things that scares me about this whole possibly having cancer thing. I know there's going to be a ton of procedures I'm going to have to go through, and I don't know if I can physically get through all of them, not without sedation or some strong medication.

You know, it amazes me that people get better meds/sedation for a SIMPLE DENTAL PROCEDURE than we get for wires and biopsies.  I don't mean to go on and on about it and I sure hate to scare anybody who has to have this done, but I think we all owe it to ourselves and to other women who might need these procedures to speak up about it.  Ladies, if you find yourself needing a wire or biopsy and are the least bit worried about it, print this thread and take it to your doc an insist on being treated humanely.