Wednesday, June 20, 2012

Sometimes I may be a little prickly

so are you, dear.
So are you.
(just a little note to everyone. nothing personal.) ;)

The Sad Truth About Happiness (a book review of sorts) and other news

I read this novel recently and quite enjoyed it. It's a little strange and unexpected but some of that can be good now and then.

Here are 2 quotes that clung to me and wouldn't let go. They are long, but very pertinent to what I've been going through so stick through them.


"Everyone's response to pain is different. There is no way to be sure that any two people feel pain in the same way. So much depends on our idiosyncrasies, how finely attuned our nerve endings are, how tightly or loosely our pain receptors are wired in to our brain and spine and fears. Our responses are entwined with our history and emotions, and are unmeasurable in any case. Even if we did all experience the same stimulus in the same way, there would be no way of knowing it. It is impossible to tease out the physical from the complex overlay of our motivations, anxieties, and tolerances. Pain has a limited and far from perfect vocabulary. I read once about an African language that must have arisen in a country with a great deal of experience with suffering. This language had a word for a malaise as specific as a painful pinching in the armpit. English is much less precise. Not much useful is conveyed by the words "sharp," "searing," "throbbing," or "dull."

"Life is perhaps after all simply this thing and then the next. We are all of us improvising. We find a careful balance only to discover that gravity or stasis or love or dismay or illness or some other force suddenly tows us in an unexpected direction. We wake up to find that we have changed abruptly in a way that is peculiar and inexplicable. We are constantly adjusting, making it up, feeling our way forward, figuring out how to be and where to go next. We work it out, how to be happy, but sooner or later comes a change - sometimes small, sometimes everything at once - and we have to start over again, feeling our way back to a provisional state of contentment."

- The Sad Truth About Happiness by Anne Giardini

Pretty relevant quotes there for me, wouldn't you agree?

In other news, I have weaned off the Zonisamide (yay for no more heartburn and crappy sleep!) and onto Tegretol, the gold standard anti-convulsant for Trigeminal Neuralgia. It's a little scary since I have to have bloodwork done periodically to check my liver and immune system function, which both can be affected on this med. Nice. But!!!! Come here, I'm afraid to say this too loudly . . . I'm gonna whisper (and if blogger were being nice to me this would be in teeny tiny font, but it's not) . . . but the thing is . . . I think it might actually be working!! Shhh . . . I don't want to scare it off. But yes. Amazing.

I got up to 800 mg, and was hit by carnival-funhouse-style dizziness, like everything was just a touch off balance, like someone tilted the floor just a little bit. Whoa there! Yikes. And . . . I started having moments where my face didn't hurt!!! It feels miraculous! It's not gone completely . . . but the pain comes more in waves instead of a very constant push. It feels amazing compared to what it's been like. I've been on this dose about 5-6 days now and the dizziness has faded quite a bit and I am feeling the best I have felt for nearly 6 months. If I stay very still, the pain is almostalmostalmost gone. The more I move around, of course, or exert myself in any way, shape, or fashion, the worse the pain is. But even that is more like a 3-4 on the 1-10 pain scale, instead of the very nasty 7-8 where I was hanging out before. So!! Very good news for the time being. :)

It's not a cure all, of course. But for now, I'll take whatever I can get.

Sunday, June 17, 2012

a note to the father of my children

I don't often succumb to the temptation to get all sappy and gooey on my blog (or on FB etc). Or at least I try not to, usually. But this guy deserves some extra special commendation right now. He really does.
Because lately he has gone above and beyond what most dads are either willing or able to ever do for their families.
The last 6 months have been really rough on our family.
I have been mostly completely out of commission. Either dealing with the constant pain, or the side effects of all these crazy meds, or the increase in my depression that has been the result of both of those. There have been many many days (for weeks, and months) where I simply have not done anything at all. Where I haven't even gotten out of bed much at all. Ugh.
Zac has had to step in and be Superdad, filling in for both the mom and dad roles in our family.
He has gone to work full time, as usual.
Then he has come home and fixed dinner.
He has helped kids with homework.
Done the laundry.
Washed the dishes.
Straightened the house.
Given baths.
Done yardwork.
Led family scripture and prayer.
Given baths.
Gotten kids to bed.
Taken the kids to church.
Resolved fights and squabbles and arguments between kids.
Cleaned up hurts and put on bandaids.
Done the grocery shopping.
Supported and listened to me.
(and continued his crazy running schedule on top of everything else) ;)
Everything to keep our household running.
He has done it all.
And I am beyond grateful to him for that.
He is not perfect.
I will not say he never complains, because that's ridiculous.
I will not say he has endless energy to do all this, because he does not.
I don't know what we would do without him.
So Happy Father's Day, Zac.
Someday I will make this up to you.
And I will be able to give more to you than I have been lately.
More than just this little note for Father's Day.
I love you.

Monday, June 4, 2012

never again (nerve block saga, part three)

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.

Sunday, June 3, 2012

never again (nerve block saga, part two)

ok, so first on Tues May 29th I got a call from the hospital reminding me of my appt the next day for a sphenopalatine ganglion block. No, remember that's the one we cancelled?!?! Yeah. Seriously. It was CANCELLED!!! Arrrgggghhhh.
On Wed May 30th I went to the Pain Management clinic armed with my list of questions and with what I hoped was my biggest dose of strength and determinism. I wasn't going to leave. I would sit there all day. I would stare at her with my stare of death. I would chain myself to the chair. Oh I don't know. But I needed my answers.
She tried to show me a very poor illustration of the trigeminal nerve from a very old textbook that wasn't at all helpful. And I showed her the illustration that I had from my Striking Back book (the trigeminal neuralgia bible) and she agreed my book had a better picture. I had also found more informative graphics online, by the way. Ugh. And she really didn't know anything else. But she copied down my list of questions and called the Imaging Center to reach the Dr who was doing my procedure. No one answered the phone. She offered to walk across the parking lot to their office and see who was there and get some answers and I sat there and waited, feeling like maybe we'd finally get somewhere! But no. The Dr who was doing my procedure works all along the state, was not answering his cell phone (probably doing procedures) and no one else in the office was experienced with the procedure. But she left him a voice mail and promised she would call me when she heard back. She put her personal phone in her front pocket along with my list of questions and apologized for the mess and promised me to get my answers.
What was I to do?
I couldn't really sit in her office all day. It was 1:00. The Dr might not return her call until after office hours. My kids were at a babysitters. What was I to do?!?
So I left, feeling discouraged and defeated. Still no answers. Another wasted copay. Ugh.
Later that day I got a personal call from the Interventional Radiologist Dr who would be doing my procedure, Dr B. I had explained to the PA that one of my questions was how much experience he had in doing this particular nerve block (esp since no one seemed to have any idea at all about the other one they had proposed and I have a feeling that's why they changed it). So the first thing he told me was that he has lots of experience doing injected nerve blocks and doing CT guided nerve blocks, but as far as this particular type, doing a block into the trigeminal nerve root, he had only done one before in his career. One. Oh. But he said it went without complication and he felt confident in his ability to do it. Then he proceeded to answer my other questions. It wasn't really the experience I was hoping for, but it's just not something that is done very often. Crazy. But I was so nervous.
The trigeminal nerve root comes out in the middle of the base of the skull basically, so they either go through the cheek and straight through your face into your skull, or through your jaw into your head, and then kind of in the spot where 2 lines would intersect if you drew them from the front of your ear across to the other side and from your nose to the back of your head. That spot in the middle of your head? That's where the needle was headed. It was possible that it could "reset" the nerve and interrupt the pain cycle and cause relief for good. It was possible it would do nothing. It was possible that it could slip and mess up and cause permanent numbness. It could cause relief for a few days, a few weeks, or a few months.
I was supposed to be given conscious IV sedation, like what they give you for a colonoscopy (versed and fentanyl), so I would be awake and able to interact, but out of it and not really care. So I was told. I was so anxious, but I just kept thinking that once I was given the sedation I would be ok. I thought I would be ok. And I was looking forward to at least that amount of relief from my usual pain. At least I would have some sedation at last! ha. ha. He would be injecting 2 types of numbing agents that would wear off pretty quickly (but could last up to 8 hrs) and a steroid that would take up to a week to take effect.
He said this would help with diagnosing my condition more precisely. But it might not address all of my pain. It might indicate that I could be a candidate for surgery, if this was successful. He said that if I hadn't already seen so many other Drs and tried medications and things, then he might not recommend it, but given my history, this was the logical next step.
And so we decided to proceed.

never again (nerve block saga, part one)

For those of you who don't have the pleasure of following me on Facebook or Twitter and have missed the Saga of the Nerve Block, I'm going to try to summarize most of it and tell the remainder of the tale for you all.
I'm not sure if I'm up for it, actually. But I am hopeful that by writing it out, I can kind of recover from this awful experience. It definitely ranks up as one of the most awful experiences of my entire life and one that I hope to never repeat. I will never again willingly undergo this nerve block procedure, that much I know for sure. I've been shaking and dizzy and feeling terrible for the 2 days since; it's too early to tell yet if it was successful in terms of pain relief.
But anyway, here's the story:
So, Tues May 15 I saw the Pain Management Specialist. They decided to start out by trying a nerve block procedure. The PA, Dr and Intervention Dr consulted and decided a sphenopalatine ganglion nerve block would be the best place to start, I asked all the questions off the top of my head, I scheduled the procedure with the receptionist as I left (to be performed at the Imaging Center that they worked with) and I left thinking I would be having it done on Thurs! 2 days away! Hurray! Relief might be in sight! Unbelievable!
Got a call later that day that no, actually it had to be done with CT guidance which the Imaging Center does not have so it would have to be done at the hospital so the hospital would be calling me to schedule. Ok. This made me slightly nervous, as did the prospect of having a needle injected up the soft palate in the back of my throat. Ouch.
{ Side note: Wed May 16, I had an appt with a neurosurgeon who only agreed to see me after he looked over my MRI and notes and thought there might be something he could do for me. So of course I was a little nervous, not sure that I was ready to pursue any surgical options, but thought that I would like to know what those options were, in any case. I had told them all my symptoms and everything already, of course. Anyway. Got there. Paid $160 upfront. Met with the surgeon. He listened to all my symptoms. Very bluntly told me the only thing he could do for me would be to sever the nerve and leave half my face numb which he wouldn't do for me at this point even if I begged him. So basically there was nothing he would do for me. He said maybe after I've suffered with this for 15-20 yrs with no relief, then maybe we'd be at a point to consider it. And as long as I'm eating and sleeping, then I'm doing better than a lot of his facial pain patients (in a nutshell). Yeah. Thanks a lot. I sort of cried all the way home. It had just been such a complete waste of my time and money and stress and effort. And I was tired and I was hurting and I had worn myself thin with all of the emotion of my mom getting remarried and having all my family in town the previous weekend, then these 2 Dr appts back to back. It had been too much. Anyway.)
Thurs. May 17 I had a breakdown and I called neighbors to take my kids for the entire day.
Fri May 18 I called around and tried to figure out my nerve block order. I called the Imaging Center who didn't have the order. The hospital who didn't have the order. The pain management clinic to get the order. I was put on hold, transfered, etc etc something like 11 times before I finally got it scheduled it with the hospital for May 30th but then when I asked about getting sedated (since that would need to be part of the scheduling) no one knew what to schedule for. No one had ever heard of the procedure. Not even the specialists at the hospital. They were "looking it up." I was starting to freak out. And I started having a lot more questions I wanted to have answered. The hospital was calling the Imaging Center to figure out what I was having done and they were calling the Dr who worked with them but was not always there at the Center and I felt like we were playing neverending phone tag of the most frustrating kind ever.
The following week May 21-May 25 - I don't even know all of the dates or the sequence of events exactly. But at some point, the Drs all conferred and decided NOT to do the sphenopalatine ganglion nerve block but to do a trigeminal nerve block instead (one of my original questions had been why we weren't targeting the trigeminal nerve original anyhow since that's where my pain is originating, but anyway . . .). I got this message from the Pain Management PA on my answering machine just saying that this would be "easier." I guess I assumed this meant it wouldn't require the mess of needing the CT scan and sedation and needing to be performed at the hospital. I'm not sure why I thought that. All of the phone calls had become very confusing. Who knows what I thought. But I did call back and talk to her and had some of my questions answered. And somehow through the course of the week, I called the hospital and cancelled the appt for the nerve block and called the Imaging Center to schedule the other nerve block there instead for Tues May 29th. Phew! I thought, done at last! It's scheduled. Again. Yay.
Got a phone call from pre-registration at the hospital on Thurs and I said, no, I cancelled that procedure, I'm having a different one done now at the Imaging Center. ok. Taken care of.
I was still trying to reach the actual Intervention Dr, however and get my questions answered about the procedure, including, but not limited to, some simple things like, what are you injecting into my face and where exactly.
On Fri May 25 (a day when I had specifically been told that he would be at the office and I should call then to get my questions answered), I was put on hold for a long time, told there "had been some confusion" and transferred unknowingly back over to the pain management clinic where I was informed that the trigeminal nerve block could NOT, in fact, be done at the Imaging Center, but also needed to be done at the Hospital under CT guidance. At which point, I lost it again, explaining that I JUST CANCELLED THE APPT AT THE HOSPITAL THE DAY BEFORE!!!! They tried to calm me down. She offered to get it scheduled for me. And she said I could come in and get my questions answered the next week. Holy crap.
So it was scheduled again. For the 4th time, mind you. For June 1. At the hospital. But I still didn't know what kind of sedation they would give me, where exactly the injection would be going in my face (although some google research had given me some pretty good ideas), or exactly what medications would be used (the first Dr had said "usually lidocaine and sometimes a steroid" - um, NOT HELPFUL!).
Keep in mind also that, well, I tend to have a sort of high anxiety level (aw shucks, yes I have a diagnosed anxiety disorder, along with depression. So there you go.) And all this chronic pain, and stress and crazy Dr mess was just not helping any of it!!! Seriously. People. This kind of stuff is not good for me.
But I had the appt to go talk to the PA at the Pain Management place for Wed May 30th and I had determined that I would not leave until I had all my questions answered to my satisfaction about the trigeminal nerve block. Surely 2 days before the procedure they would have to find a way to get the answers for me, right?
Oh, if it had only been that simple . . .
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