*NOTE*- I started this Post MONTHS AGO, before my first post, so there is some repeated information, but, this was the beginning of my Occipital Neuralgia diagnosis and treatment.
*I wanted to post this, before PART 2, because of the paperwork HELL that has followed, and needs to be documented. Sometimes, red tape can be so much worse than being chronically ill, and can actually lead to depression, and I honestly think some of these people need to be held accountable for delaying care of patients, due to their laziness or incompetence.
Laryngeal nerve damage; sounds scary, right?
It's just a possibility, but, I couldn't speak for over a month after an injection thru THE FRONT of my neck, in order to relieve my head pain.
In the Grand Scheme of all I've been through in the last 6 years it actually only ranks about a 2.
But, in my pre-paralysis life, trying to get out more, seeing people, and SINGING, it ranks about an 11.
Let me explain.
I'm not a doctor, just a patient. Sometimes I call myself a "Professional Patient", due to the fact that I have had SO many doctors, nurses, and surgical procedures, because I can tend to feel more qualified than the people practicing.
They do call it "Medical PRACTICE" for a reason. And just a note, in the medical field, "practice" doesn't always make "perfect"!
I have a chronic "condition". A rare, neurological, auto-immune disease, called CIDP. Not usually fatal, but can be in the wrong circumstances, and if you don't have the right team of doctors, the mis-diagnosis of every symptom you have can be hell!
I wont back-track into the last six years, I have a different blog for that.
Long story short, I was paralyzed on my right hand side, pregnancy exacerbated the condition, and IVIG treatments, and a GREAT neurologist saved my life. I am walking again, but dealing with side effects of treatments and medications.
I'm writing this in hopes a doctor reads it. Or maybe medical students, before they sell-out. (You will. Keep saying you won't, but you will.)
Where do I start? AHHH, the Headache.
June 2011;
I started to get a pain in the back of my neck. It ran up the side of my head in a perfect line, like someone poured lighter fluid on the right side above my ear, and set it blaze. Some days it wasn't too bad, and other days, it felt like someone was trying to pull an axe OUT of my head. (Imagine someone standing over you, foot on your neck, yanking an axe out of the side of your head...)
So, I did what I always do when something scares me... I ignored it.
You may shake your head at this...but when you've seen as many doctors as I have, you'd understand I wasn't in ANY hurry to go see another one.
It took me 9 days to admit I needed to see someone. The first 3 weren't too bad, the next 3 it got worse, and my husband started to notice my discomfort, and by day 7, I was yelling at the kids for just giggling too loud.
So, I went to see my regular neurologist. An MRI was ordered, as usual. I've actually lost count of how many I've had at this point. Normal. Well, normal for me. So, blood was ordered, and pain meds were prescribed.
So, when you have a demyelinating disease, things tend to get thrown in the same category. "It's probably just a side effect of...(insert medical term here.)"
Maybe just a migraine. (Which can be horrible)
Maybe its just swelling in your brain. (Aseptic Meningitis- To "non-chronic" patients, this is scary. It's in the normal category for me.)
So, after a lot of "maybe it's..." and blood work, MRI's and referrals, nerve pain medicine, pain medicine, anti-depression medicine, anti-inflammatory medicine, muscle relaxers, homeopathic remedies, I even PRAYED.....yes, I tried EVERYTHING.
Nothing worked.
So, as the headache made it's place known in my life, my brain and body started to cope as best they could.
If you've EVER been in pain for a long period of time, you know what I'm talking about.
But, for those who don't understand chronic pain, here's the long and short of it;
You learn how to deal. Here are the phases you go through.
FIRST, you panic, because pain that bad would send a normal person to the Emergency Department.
You think of the worst case scenario, brain tumor, stroke, aneurysm, things like that.
NEXT, after all of your tests come back normal, you question your sanity. (and everyone else's!)
THEN, you get angry. REALLY angry. You're in pain, and NO ONE KNOWS WHY?
FINALLY, depression sets in. You become complacent, and forfeit to the pain. Stupid things start running through your head, like "maybe karma has finally caught up with me." and "maybe it's psychological", or "they will never figure this out, and I will have to stay like this forever"
The worst part; NO ONE CAN SEE YOUR INJURY. Although debilitating, paralyzing, and FAR worse than a broken bone, because it's not visible, NO ONE KNOWS, unless you tell them.
Right, because that's what you want to do, right? Walk around trying to "explain" your unexplained pain!
Here's the important part. You can stay depressed, like many people do. You can stay on your pain meds, and let the disease, pain and side effects take over, and become a shell of a person you used to be. Walk around in auto-pilot, and forget all that's important.
Honestly; I think that's okay for a while. It's normal. But, you can't stay there forever.
I am a lucky enough person to have a damn-near perfect life, with true happiness, behind my disease. My husband is wonderful, and I have 2 beautiful daughters that I have to live for.
My husband goes to EVERY doctors appointment with me, and we try not to let our kids be affected by the ups and downs of all we've been through. So, I am not alone.
So, what I suggest you do; the same thing I did.
Fight. Fight like hell.
My neuro, who I adore and respect, did what he could for a while. He was hoping that is was some sort of horrible chronic migraine that would remedy with at least ONE of the meds we tried.
Trigger points would actually help get rid of the pain in about 1/4 of the scalp area, for 4 hours at a time, but I couldn't keep having him inject lidocaine into my scalp and neck every 4 hours, but I thought about it!
So, after a couple of months, he sent me to a Pain Specialist, so we could get a better diagnosis, and try to start non-medicine based treatments. I hate pills. I just want the pain to go away.
The new Pain Doc was pretty cool when I first met him. With my permission, he TEXED my Neurologist while I was in the exam room, to get my diagnosis codes to understand my condition better. It's hard to explain to every new doctor that, "Yes, I have an auto-immune disease", but, "No this is it's own thing"....blah blah blah. He got the back story, and told me we could try a procedure similar to the Epidural injections I was used to, but in my neck. He talked WAY too fast, even for me, but I liked him for the massive amounts of information he was giving me.
He had a P.A. with him, who seemed to do all the "leg work", so after the initial visit, I left with yet another handful of orders for tests, and made my follow up with the P.A, instead of the main doctor. It ended up being one of the best decisions I have made.
Okay, back to the beginning of this post; We spent months going back and forth with medications, to the point of me getting so frustrated that I detoxed myself from my pain meds, just so I could describe the pain better to the P.A. He called me crazy, told me to take my pain meds, and I scheduled my first procedure for my headache, which is reached through my neck. A cervical nerve block, from C-2 to C-5 is where the Occipital Nerve branches out, so this test was to serve as a diagnostic tool, as well as (hopefully) pain relief.
I waited a couple of weeks, and scheduled my procedure with the original Doctor that I had seen at the practice, and was told I had to be sedated during the procedure to reduce the chance of any movement. I had NO problem being sedated during procedure where they were going to stick long needles in my NECK, so I signed away!
My first procedure went pretty well. I was face down on a procedure table that looked like a massage table, so, all I could see were the techs feet, and hear the overly ambitious female anesthesiologist trying to sound all tough and business-like in her male dominated profession. (As a female who has spent my ENTIRE life surrounded by male dominated trades, and then choosing a career in one, I could relate.) She spent a little too much time trying to use big words and look tough. You can always spot the insecure ones by their over-assertion of power.
Anyway, I couldn't feel a thing after the local was inserted, and I could actually FEEL the feeling go away. Does that even make sense? I felt the pain from the back of my neck dissipate, all the way up the line of pain on the right side of my head.
I was ecstatic.
I cried, hugged the doctor, and walked out to my husband with a huge smile on my face. I think I talked about a hundred miles an hour on the way home. Stuff I was going to do, I was going to dye my hair again, Look honey! I can touch my head! I even ran my fingers through my hair. I was SO HAPPY! I was tender in the injection site, but I didn't care! My HEADACHE was GONE!
4 hours later; I cried again. Very slowly, the local pain medicine, that accompanies the medicine in the shot, wore off.
And, just as it wore off, the headache came back.
I cried all night. I hid in my bedroom, and my poor husband went and go the kids, and had to keep them away from me. I felt horrible for him. He looked happier than me when my headache went away, because he's watched his wife in pain for so long.
The next day, I made an Emergency Doctor's appointment. I had to see the P.A., because the main doc's schedule was full. No biggie. I didn't care. I just wanted a damn explanation.
I was a mess. No makeup, I still had the same clothes on from the day before, and still had the yellow-orange tint to my skin from where the iodine was applied during the procedure. Did I care? Not one bit. My husband was with me, thankfully, because I was so emotionally unstable that I wasn't able to complete sentences.
When the P.A. walked in, I could actually see sympathy in his eyes. You don't see much of that in Doctor's offices anymore. They've usually either sold out, or become numb to people in pain. No this one. He asked me how I was doing. I teared up as I explained, and my husband had to cut in, more than once, to get my point across for me. The P.A. listened. Intently. When we were done, he apologized for the pain I was in, and I actually giggled a little. It was like he was taking credit for the pain. He felt obligated to get rid of it.
So, what he explained was; The injection is full of anti-inflammatory medication (Cortico-Steroids), and they take awhile to work. The local pain medication got rid of my headache because it hit the base of the Occipital Nerve root, and did it's job. So, the injection wasn't a waste...it was DIAGNOSTIC. If it hadn't worked, even partially, then they would have known I had the wrong diagnosis. Because it DID work, even just for a couple of hours, they were able to successfully diagnose me with Occipital Neuralgia.
Now they could develop a system to get rid of the headache for me, because at least they knew exactly what we were dealing with, and I had an official diagnosis.
So, with this diagnosis, he told me my options. I could wait it out, and see if within a week or two I had any relief, or I could work towards a Rhizotomy. In the mean time, I would be put on an oral medication regimen that would reduce my pain dramatically.***(More on the meds in Part 2)***
I chose both. To work towards the Rhizotomy, I had to have a few more Cervical Facet Blocks that didn't work. Sad, isn't it? I had to go through procedures that I knew wouldn't do anything, in order to have a larger procedure that would HOPEFULLY help. But, my insurance company dictated this, so I had to play by their rules.
I made the appointment for my next procedure for about 2 weeks later, but my regular Doc was on Vacation during that time frame. Since we knew it probably wouldn't work anyway, I went ahead and scheduled the procedure with a brand new female Doctor that had just started with the practice. She was "new" (to this office) so, her schedule was more open.
We discussed that, if I improved at all, I would cancel the procedure, and make a follow-up appointment to let them know. That didn't happen.
The day of my procedure, I "Googled" the female doctor that would be performing the procedure. On the Pain Specialists' website, it listed award after award, article after article, and I was highly impressed. If you know me, you understand why. If you don't know me; I have a soft spot for any female in a male-dominated profession, especially if they have dominated in their field. There are 2 types of females that do this. The "insecure, I need to do this to prove to other people I can do this" and then there is the "I need to prove to myself I can do this, because I have been made to think I couldn't". (If you remember the anesthesiologist from earlier in my story, she was the first one.) I'd like to think that I, myself am in the second category.
Okay, so, now we've almost rounded back to the beginning of this post...I'm getting there, I swear!
My procedure was scheduled for the afternoon, which meant I wouldn't be able to eat or drink anything due to the sedation I was going to receive. Well, the sedation I was supposed to receive.
Here goes; I got a call at around 1:30pm from the front desk girl at the procedure side of the Doctor's office. Apparently, the Anesthesiologist didn't show up that day. I was a little irritated about this. He just didn't post for work? Really? I couldn't believe she actually told me this! So, I was given the option to re-schedule, or proceed with the procedure. (Sounds funny; proceed with a procedure? Sorry, it's early.)
My thinking; Since I had this procedure before, and we knew it wasn't going to work anyway, why not?
So, I let her know we'd be there, and then I chose to eat on my way, because I had been starving myself for the anesthesia part of it. I don't do so well without food. I was irritable and emotional on so many levels, because of the low blood sugar, the anxiety from pre-procedure jitters, and sad that I knew what was about to happen. I was going to have 4 hours of relief, and then my headache would come back. I took 2 Valium to calm myself. Jesus, was I a mess, and my poor husband had been a punching bag all morning because of my instability! (I think he was looking forward to me being sedated, and sleeping for the rest of the day, and I don't blame him one bit.)
Upon my arrival, I handed in my procedure paperwork, felt the Valium kick in, and handed my husband the Kindle (one of his versions of Valium), so he could combat the boredom that comes with the joys of being a caretaker.
We waited for nearly an hour, which is ridiculous, because they had actually canceled patients, due to the Anesthesiologist being "Out". I was brought back to the "Pre-Procedure Room", where they took my vitals, explained that I needed to stay VERY still during the procedure, because they were inserting a needle into my NECK, and if I jerked or moved, I could cause issues. I signed my legal rights away, and prepped myself mentally for the procedure. The mood in the room was somewhat frantic. You could tell they were behind schedule, and I could hear the nurses and techs chatter about the female doc's bedside manner, and pushiness towards them. I learned by "over-listening" to their conversations, that because this Doctor was new, they had to learn HER way of doing things; where she wanted them to stand during a procedure, what kind of drape, how many needles to prep, where she wanted the fluoroscope, etc. They were used to the other doctors' procedures, but apparently this ones' attention to detail was annoying the hell out of them. The was particular about everything. (You learn a LOT from overhearing conversations in these situations) I thought to myself; that I didn't really care what her bedside manner was like, as long as this didn't hurt.
I thought wrong.
When it was my turn to be brought into the room, she instructed the nurse to have me turn my gown around, so the opening was in the front. I found two things wrong with this; 1) She was standing 4 feet away from me, and instructed someone else to instruct me, and 2) why in the hell would I need the gown open in the front, if she was placing one needle in the back of my neck???
All 3 of us, the tech, the nurse, and I looked at each other, puzzled.
My questions were answered 30 seconds later, when she did the "instructed" thing again. This time, she was only 2 feet away from me, barking orders about the placement of EVERYTHING in the room to the tech. She instructed the nurse to explain that she was going to go through the front of my neck in order to reach the facet joints in my C-spine where the medicine needed to be placed. Even though I could hear her just fine, she gave the nurse a look, and the nurse had to repeat everything the doctor had just said. The instructing thing was infuriating to me. And now, on top of that, I was scared out of my mind.
Recap from my perspective; I'm doing a pointless procedure so I can qualify for another procedure. I have already been through one of these procedures, so I think I know what to expect. I made the decision to go through with the procedure un-sedated because, again, I thought I knew what to expect. Now, within seconds of walking into the room, I'm scared, frustrated, and the only people in there that can help me, look just as scared and confused as I did.
So, my natural instinct kicked in, and I started to cry. Quietly, tears rolled down my face, and I laid on my back on the table, in a huge hurry to get this over with. The tech finished her set up, and came and held my hand. I think she was squeezing as hard as I was, and I could tell that she felt incredibly sorry for me at this point. The doctor barked orders to me about positioning myself, and I cried harder. Not a sound came out of me, just tears. Lots of them. She growled at me to stay still, and did the infamous "instructed" thing the whole time. Everything she said, was echoed to me by the nurse, like there was some sort of two-way mirror between the doctor and I.
Okay, watching a needle come at your neck is awful. I'm pretty tough, but I am not ashamed to admit how terrified I was. Even with Valium on board, I was afraid and rattled.
But, watching 3 needles come at your neck is worse.
Tears, now steadily streaming down my face, were being wiped away by a nurse that looked like she wanted to cry with me. I somehow squeezed out the words "I didn't know we were going to use 3 needles?" I was answered by the doctor, who, apparently now could see me laying there. She explained that she did things differently, and since my last procedure didn't work, this was a better thing to try. She went on about how one needle was for the local, and it was actually just a "lead" and the other 2 were for putting the medicine in more than one spot, and blah, blah, blah. Oh, now you can acknowledge that I exist? I explained that I could feel a TON of pressure in my neck and throat, and she told me it was normal.
When she was finally finished, I was walked out of the room by the nurse, who sat me down in the post-op chair, and got me tissues. She grabbed the post-op nurse and filled her in, and got me an ice pack for the 3 new puncture wounds I had in my neck. When I went to ask a question about the pain I was in, my voice was gone. I assumed it was temporary, but cried harder.
The pain in the front of my neck was horrible. The muscle that holds my head up felt like it was on fire, and hurt like hell. I took a couple pain pills, meditated while they took my blood pressure, so it was low enough to go home, and got the hell out of there.
I waited to fill my husband in on the way home about what had happened, because the poor thing was handed a floppy mess of a wife when they let me leave the procedure room. He probably asked 6 times if I was alright, to which I just shook my head, no, and kept walking until we were out of the office.
I never wanted to go back there again. My neck hurt for WEEKS afterwards, and I couldn't talk. I had this awful raspy laryngitis sound coming out of my mouth, every time I needed to say something, and it felt like I was one swallow away from my throat closing.
So, I made another follow up with my P.A. and explained everything to him. He couldn't tell me why she went through the from of my neck. He had never heard of it before, but since she was a world renowned Pain Doc, she must've had her reasons. I called my neurologist as well, and he had never heard of it before, either. I told him I would NEVER do that procedure again.
So, he scheduled the Rhizotomy for 2 weeks later. I had been tortured enough.
Let me give you the time-line; my Rhizotomy was scheduled on the 1 year anniversary of the start of the headache. A whole year of hell.
And this is only Part One.
To be continued...
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