On Thurs before the procedure I got a call from the nurse who would be working in radiology with me for the procedure and she said that she had spoken to Dr B about everything and about the sedation etc and talked through what would be happening which I appreciated.
Then on Fri, Zac and I had Elisabeth's kindergarten graduation in the morning and we had to leave right after to get to the hospital on time. I was trying to rush and grab some pictures of her before we left and the last ones, Elisabeth was frowning impatiently at me because she wanted to go get some of her cake and not take pictures. Oh well. I'm grateful for a 13 yr old who could stay with her and eat cake with her, take pictures with her teacher, and walk home with the other kids.
I had to fast from midnight the night before for the sedation and the zonisamide anticonvulsant I'm on (for the pain) gives me heartburn - which causes nausea on an empty stomach. Combine that with some anxiety about having a 4-5 inch needle stuck in my face and I wasn't really feeling very well. I was already shaking and sweating. But Zac kept reassuring me that once I got the sedation going, I'd be ok. I tried to keep remembering that.
So, we checked in at the front desk. Checked in at the radiology desk. They gave me the order for he procedure. And it was the wrong order. It was the order for the Sphenopalatine Ganglion nerve block. THE ONE THAT HAD BEEN CANCELLED!!!!! AHHHHH!!!! ARE YOU KIDDING ME?!?! No, seriously. They don't have the order for the trigeminal nerve block. Not only that, but she tells me Dr B isn't supposed to be in that day. Um. No. I just talked to him personally on Wed and he said he's doing it. The nurse told me YESTERDAY he's doing it. Yeah, he's not on the schedule, yada yada, blah blah blah, have a seat, we'll see what's going on, etc etc.
So, then my nurse comes out and introduces herself to me and asks for the order. I tell her they have the wrong one. She talks to the receptionist. More talking. She takes me back and tells me they'll have to call around to the Drs and get a new order faxed over. Lovely.
Meanwhile, they get my IV started. I'm shaking and just thinking in my head that I won't let them sedate me until I know they've got the order for the RIGHT STUPID STINKING NERVE BLOCK. We're not off to a good start.
Then Dr B shows up. After more phone calls and confusion they get a verbal phone order for the correct nerve block. Dr B goes over the risks again and tells me there are 2 possible entries and they will look at my anatomy on the CT scan and determine the best way. Also, I didn't realize before that the CT scan is not exactly done simultaneously with the injection. It's a back and forth thing. So the needle goes in a little, they roll me into the CT scanner, back out to push needle in farther, back into scanner, back out to push needle in some more, etc. Oh. my.
Please please please just get me sedated . . . . . .
So. We go into the CT room. I lie down on the table, the radiologist puts me in the scanner to get my head right then tapes my head to table to I can't move it. I get my IV set up, blood pressure cuff on my arm, oxygen monitor on my finger, EKG tabs on my chest, oxygen cannula set up by my nose in case I need it. They scrub the side of my head. They've decided to go in the side of my head by my jaw, I'm not sure why. The nurse starts my sedation. She says I should start to feel relaxed and happy, and like I just don't care what's happening. Umm . . .
I start to feel just a little dizzy which I mention and she says that's probably the sedation. And then he starts to put the needle in. And it's like everything holding me together has just been punctured. It hurts so much more than I had ever anticipated. Excruciating. And why the crap don't I feel sedated?!?!? I start to cry. Reflexively, before I even realize it, tears just pouring down my cheeks, lips quivering, diaphragm convulsing.
They do the first CT scan and I try to breathe. I know I should try to stop crying. I know I should be strong. I know "people" endure so much more pain than this and are so much stronger than I am. But I just can't stop. I'm afraid of talking and moving my jaw and having the needle move and messing up it's location and causing a complication. I'm afraid of my tears leaking down onto the sterile injection site. I'm afraid they think I'm psycho. I just can't help it. I don't understand why the sedation isn't working. Why do I feel so alert? I thought I wouldn't care what's happening? Why does this hurt so much? No way on earth I'm not going to remember this . . . ..
The needle goes in deeper. They ask if I'm ok. I say no (and I remember thinking that I had no problem at all responding coherently - I thought versed made you say funny things?!?). They ask what's wrong and I say it hurts so bad. I can barely talk because I am sobbing so hard. He injects more lidocaine but I wonder why they don't give me more sedation. I don't know. It is the worst torture of pain I have ever experienced. They give me the oxygen. The injection seems to last forever. Back and forth. CT scan, more needle.
It's finally over. He asks me if I can see. So I open my eyes and say yes. He asks if I can swallow. I try to catch my breath enough to take a swallow and say yes. They detach all the monitors and help me climb over to a gurney and cover me with a blanket and I cover my face and sob as they roll me back to the recovery room. I don't stop crying for at least another 30 minutes. I look over and see the look of concern on Zac's face. He says the nurse warned him that I was "stressed." That's one word for it I guess. I feel shattered. Like the needle has gone in and just destroyed some essential part holding me together. Zac said the nurse told him my heart rate had gone down when they gave me the sedation so it had an effect on me, but then shot back up when they put in the the needle. I don't really know why the sedation didn't really work for me. Could the medication have had an opposite of its intended effect? Who knows. But that was truly truly awful.
They gave me something to eat and drink. I asked for a CD of the images from the CT scan (heck yeah, I wanna see this). One of assistants who had been in the CT room apologized for how awful that was for me as we left the radiology area. I didn't want to look anyone in the eye.
Here is one of the images. It's like a cross section of the base of the my head, looking up at my nostrils. It makes me look like I have a huge honker of a nose, but you can see the white line and gray shadow of the needle coming directly into my head there on the right side of the image. The report says the procedure took 20 min, so if you can imagine a needle being slowly inserted over 20 tortuous minutes right into the center of your head, well then, that's what it was. I have no idea what to compare it to.
But the resulting numbing on the side of my face (from the lidocaine) only lasted maybe a couple hours, unfortunately. It could take up to a week to know if the steroid is going to have any effect at all on my pain (nothing so far). My jaw has been tremendously sore. And I have been emotionally raw and worn out. Even if it works and provides some measure of relief, I don't think I will ever do this procedure again. I just can't imagine ever going through that again. Ever.
6 comments:
Huh... well I think I had pretty much the same procedure, though it was done at a pain clinic and only lasted maybe 15 minutes. Yeah, it was awful, I cried, too. But basically it was maybe 20 minutes from the minute I walked in to the minute I walked out. No sedation, only benzocaine wash and lidocaine injection (I think twice). Mine was done simultaneously with a guided x-ray, meaning he was watching the x-ray at the same time he was putting in the needle. Then I had these electrical pulses done which was very weird but didn't really hurt, I felt them in the roof of my mouth. I left there with a HUGE cheek and not much numbness. The swelling mostlly went down within 2 days but now (still) I have a very ugly bruise near my chin (how did THAT get THERE?) which is slowly fading. Gosh I hope there is some relief for you, I finally have SOME but like I said earlier on Twitter, I still have some pain. Maybe I have to wait a little longer?
OH MY GOD!! You poor, poor thing! I can imagine why you don't ever want to go through that again!! I'm so incredibly sorry. Words cannot describe the pain I feel in my heart for you.
I do hope this works to alleviate your pain. You of all people, deserve it!! Stay strong my dear friend. I know it's hard to think so now, but you have to hold on.
K8 =]
That sounds truly, truly awful. I'm so sorry. I just hope it gives you some relief so it wasn't all for nothing.
KrIsten, what a nightmare experience for you. I agree that something was wrong about the sedation. I've had the partial sedation for a colonoscopy and there was very minor discomfort. I hope the nerve block medication kicks in and gives you relief.
I'm so sorry. I know the horrible experience of having a painful procedure when you didn't expect it to be so bad. I felt violated and so traumatized that I couldn't even go back for my follow-up and I didn't go back to the doctor for two years after that. It's okay to cry when there is pain. Sometimes that's all that you can do. I hope that there is some relief from this madness for you.
How terrible! I am so sorry you had to go through that! Constant pain is so hard. I'm praying for you.
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