Wednesday, December 18, 2013

My apologies for the vanishing act

I just wanted to take a moment to apologize for vanishing recently. Life has been... complicated, to say the least.

I should probably explain that my last surgery was an experience straight out of nightmares. The first day I was post-op, my assigned Hospitalist (a doctor who manages your care while you're inpatient) got his hands on my chart and promptly yanked me off more than half of my meds. This included an extended release pain medication that acts in the brain as both a sudo-narcotic (a non-narcotic that can trigger the same withdrawal symptoms as the real deal when stopped abruptly) and a SSRI (class of antidepressant). They also withheld my SNRI (a type of antidepressant used to control long term chronic pain), and nearly all of my GI medications. So I spent 5 days in hell. I was freezing cold one second then extremely overheated the next. I would sweat through my sheets in minutes after they changed them. I've never been so anxious in my life. My heart rate was through the roof and if I so much as breathed deeply, my heart rate monitor would sound an alarm. I actually spent 3 days screaming, "There's bees in my wrist!! Oh, my god, there's bees in my wrist!!" And the doctors? Did nothing but stand there and watch. Only on the 5th day did anyone bother to  do anything, and even then they didn't bother to give me my proper meds. Instead, a nurse talked a doctor into giving me a dose of Ativan, which finally allowed me to calm down enough to explain to the friend there caring for me what was wrong. She promptly went and got my meds from the hotel and gave my meds from home, and in hours, I was on my way towards normal. It was only until after I'd been out of the hospital for a full 24 hours before I could manage to hold down any food or drink. In the week I was inpatient? I held down a single sip of Sprite.

So obviously, the word "Surgery" is not a pleasant one for me. We don't know if I have full blown PTSD at this point or just severe situational anxiety, but the idea of an inpatient stay or surgery terrifies me. This isn't a good idea for someone with health issues that require frequent surgery. This SCS implant will be my 8th surgery in 9 years.

Despite the rising anxiety about the SCS surgery, I decided I couldn't let other things slip, and I made an appointment with my GI doc about a month ago. I had been having occasional intestinal pain after eating and combined with a few other symptoms, the possibilities included Crohns Disease and the RSD/CRPS spreading to my intestines. After a round of testing, the results were in. The newest addition to my list of GI issues? Severe Gallstones. Apparently, my gallbladder is "completely filled with extremely large stones". The quote is from the radiology report. After they got done being floored I'm not in more pain (seriously? I have CRPS- pain is as common as breathing), they told me I need surgery #9, to remove my gallbladder. Two days ago I had a gallbladder attack, where one of the stones shifted and caused major pain, which necessitated a trip to the ER for an injection of pain meds and nausea meds. Thankfully, the meds relaxed my body enough to allow the stone to shift again and the pain is back to it's normal level.

Between the gallbladder going bad, I've had one major dental issue after another. My autoimmune issues cause my teeth to rot, and I usually end up with 10-14 fillings per year. In the last 2 months, I've had a tooth chip while eating toast of all things, which resulted in a crown. I've had my normal cleaning and 5 fillings. A filling chipped off, which meant an extra appointment to fix it. Then I ended up with an abscessed tooth out of nowhere- I had no real risk factors for an infection like that. The abscess meant a full root canal. Then the infection came back. Add in removing more material and a second round of mega antibiotics. I go back tomorrow and if I'm lucky, we'll just pack the tooth with permanent filling and I'll be done. If I'm unlucky, I'll end up needing surgery #10, to surgically remove the nerves at the tip of the roots, since sometimes the infection lingers up there. I have no way of knowing which way this appointment will go, since I'm still having jaw pain and sensitivity.

I have to say, the thought of facing 2-3 surgeries in as many months is terrifying. I've spent more than one night lately curled up in a ball trying desperately to remember to just breath. It's not easy to remember. This would be easier if I were dealing with surgeons I knew, but the unknown? Terrifying. Simply terrifying.

So I apologize for the quiet, though I will try my best to keep everyone up to date on the SCS process and various surgeries. Depending on how I feel, the post the day after the SCS might be made by a friend. I promise she's as crazy as I am. ;)

SCS pre-op appointment

Today was my first appointment with my neurosurgeon, Dr A. He actually is a pain management doc and works full time with my current traditional pain management doctor (the one who manages my meds, who I honestly extremely dislike), Dr M. Yes, I have 2 pain management doctors already, Dr. M, who does traditional pain management, ie, my medications, and Dr R, who does interventional pain management, ie, my injections. And now Dr A, who will do my SCS implant surgery.

It was a crazy long appointment, about 2 hours, which shocked me as I've already passed so many hurdles for the SCS and I'm already seeing a doctor in the same practice. I did manage to dodge the "pee in a cup" routine to test for illegal drugs. Those tests are extremely expensive (I currently pay $300+ out of pocket for each one and I have several done per year) and since I just had one 2 months or so ago by Dr M, who is in the same practice, I really didn't want to pay for another one. Since it was the same test, same company, same practice, they accepted the last results. My pocketbook danced the cha-cha.

After the normal check in routine and pages of forms to fill out about meds, treatment modalities tried, pain intensity, etc, I had an hour long exam by the Physicians Assistant. She pointed out how weak my right leg is (knew that already), how discolored my legs are (knew that already), how wonky the hair on my legs is (knew that already), and the huge number of large, gnarly looking surgical scars (gee, how did those get there?). Then Dr A came in and talked over the entire thing with me. Pretty straightforward. Most of my questions had to do with meds and the day of- mostly, can I take my meds that morning? (Yes, I can, so long as I don't eat anything.) And please do not remove my Butrans (buprenorphine) patch. (They promised that so long as I warn them to not put any warming blankets over it, they won't.) I don't want my patch removed because they don't replace it afterwards, so you're left to spend up to your first week post-op in withdrawal. Been there, done that, it sucks more than I can ever begin to explain.

The only thing that was different than I expected was that the doctor will out of the country for the first week after my surgery. He had been trying to avoid doing surgery that week, but we had requested it, so it truly doesn't bother me that he'll be gone. He's already planned to have a colleague cover for him, so everything should be good. I do appreciate the warning, though, just so I know everything going in. All in all, Dr A seemed like a decent guy from the very short time I spent with him, and now the next step is actual surgery on Dec 27, at 1pm EST.

Sunday, December 15, 2013

SCS trial, days 3-6

It's official- I failed to manage to post every day like I'd planned on doing. I have good reasons, I promise. While you have the trial in, the doctors want you to push the limits a bit. There are rules about how can you can move, so as to not move the wires too far from where they need to be in the spine. But within those limits, they need you to see if you can do more than normal. So I spent the last 4 days of my trial getting out of the house and walking more. This meant I was extremely exhausted, from not only the extra activity, but also from the process of my brain adjusting the sensation of the paresthesia.

The end of the trial:

My trial unit was malfunctioning. It worked, but every time I turned on the remote, the intensity went up. It was very,  very random. A couple minutes after the remote locked again, the intensity dropped again. The sales rep said that the big thing was I was getting pain relief. And I did!

It was fantastic. I actually got pain relief. The buzzing is weird, but you get used to it shockingly fast. The buzz is exactly like everyone described it- it felt like a cell phone on vibrate, just from my belly button on down.When I cranked it up, it feels a bit like my leg is about to fall asleep, but hasn't yet done so. It's completely painless. Even when I moved suddenly and get a big jolt, it didn't hurt, it was just startling. Plus, once I get a permanent unit, I shouldn't get those odd jolts. With a permanent unit, scar tissue forms inside the spinal cord around the electrodes and holds them in place. The wires are also connected to the actual vertebrae through some drilling, plastic, and metal. The trials are far more flimsy, hence the jolts.

It was a fairly easy decision to decide to go through with the permanent implant. I could bear about 10-15% more weight for short distances within 1 week of the trial unit being in- and SCSs become more effective as time goes on and the nerves higher up the system are less traumatized and become less irritated in general. Kind of like a wound healing. When the healing first starts, everything is more painful because there's swelling and irritation of the surrounding tissue. But as those issues fade, even if there's still a bit of a wound left, it's far less painful. Same idea. The SCS is not a cure, nor will it even likely buy me a remission period, but it should lessen the burden of quite a few of my symptoms and slow the progression of the disease.

One of the best surprises of the trial? The SCS slowed my heart rate! This is not a normal thing for them to do, but I have chronic tachycardia that is severely exacerbated by my CRPS. So my heart rate dropped low enough that I could make do on my old dose of beta blockers and still breathe, or about 80-100 bpm. I was very happy with this, as I'm currently back to my newly doubled dose of beta blockers and it's trying to tank my blood pressure, so I'm eating All the Salt.

Anyways, I'm meandering a bit. The trial was excellent. I found myself rarely messing with the remote, only adjusting the current about 3-4 times a day. I could comfortably do almost everything with it on, including sleeping. With how loose the trial is inside the body, I quickly learned to not do anything that involved tensing the muscles with it on. That included going the bathroom, coughing, and crouching (which my hip hates anyhow). I chose to use the on/off button on the actual unit strapped to waist most of the time, as I hated shuffling back across the house for the remote. I figure I'll carry the remote more on me for the first few weeks after the final implant.

As for personal hygiene during the trial, there was a firm No Bathing policy. I chose to go with fully unscented, sensitive skin wet wipes instead of old school sponge baths- much easier. Plus, I don't sweat much, so it wasn't a big issue for me. My hair was much, much harder to care for. I used Aveeno brand spray dry shampoo the first few days, and while it did strip the oil from my hair, I found it left my hair very limp and sad looking. After a few days, it had built up quite a bit and I felt disgusting, so I conned my dad into taking me to Great Clips (very cheap chain salon) to get my hair washed. I couldn't manage to wash it at home as I couldn't bend far enough to get my short hair away from my back. The salon was able to lean me back in one of their chairs. I had planned on my normal stylist being able to do this, but M was off for the holiday weekend, so I made do. It worked great and I felt infinitely better afterwards.

Now, to just wait for my surgery day. I'll be seeing a surgeon about 40 minutes north and the surgery will be at a hospital I've had surgery at before. (Though, really, I've had surgery in most of the local hospitals it seems...) My pre-op appointment is this upcoming Wednesday, 12/18, and surgery will be Friday, 12/27 at 1 pm EST.