Puzzle pieces

I perpetually feel like I'm breaking, like another piece of falls out of place with every passing day. Like a small subset of patients with CRPS, mine likes to spread. It started in the outside of my upper right thigh, only, on Sept 4, 2004, at 2pm. The injury that triggered my CRPS (most cases are triggered by an injury) was a fall down 1 stair. Not a flight of steps- just a single, little stair. Further injury, of any sort, to the body can make the disease spread, and for me, surgery is a sure-fire trigger. If you think back over the last few months, you'll remember that I've had 2 surgeries since the end of 2013. Guess what that means?

Yep. It's now full body. The spread of the CRPS into my arms has been documented by 3 pain management physicians in the last two months, and I was referred for an aggressive series of Stellate Ganglion Blocks. These injections are basically the same thing as the SNB's I've been having done for years, just into my neck instead of into my back. My regular Interventional Pain Management doc, the guy who has done my back injections for years, sent me to his boss to have the series done. 

The hope is that we will be tackling this soon enough to bring it to a halt and get my arms into remission. At this point, I've had 2 injections done and my third is scheduled for 2 weeks from now. Honestly, I'm sure not at all sure if these will ever come close to buying me a remission. My current guess is no. But I'm certainly going to try, and if they help, then that will make me a candidate for a second SCS trial, this time in my neck. (And yes, even if you already have a SCS in a different portion of your spine, you still need to go through a trial again to get a second pair of wires implanted.) 

In the interest of full disclosure, when I started writing this post 4 weeks ago, the title was, "I swear I break a little more every day". Then, when I was out running errands a few days ago, it dawned on me- while things certainly can, and do, get worse on me on occasion, I finally have the needed tools to also help myself cope. Instead of being a crumbling piece of china that will never go back together, I'm more like a jigsaw puzzle, that both comes apart easily and can be slowly, and carefully, pieced back together. 

Image from EngineeringDaily.net

That certainly doesn't mean I'll ever be normal, fine, or even just not disabled. Far from it. Just like a puzzle is never again a solid sheet of cardboard after they cut the pieces apart. But puzzle pieces can be laid next to each other and form a very fragile semblance of a whole picture. And now that I'm finally working with a knowledge of what all the pieces are that exist out there, I can slowly start putting back together a life for myself. Just knowing that helps so much when things seem dark.

Spring is in the air

I've never been a big fan of winter. Far too cold for my tastes. Spring has always been my favorite time of year- not too hot, not too cold, not yet sticky with humidity. This year has been especially nice, since I have my own yard in which to plant flowers and start a garden (I bought my house late enough into the spring last year to make it tough to do any of this). 

My front flower beds have been in need of an overhaul, for several reasons. First off, the houses prior owner was a bachelor who did not enjoy gardening, and the landscaping made that obvious. Every since thing out front was a shrub. No flowers, aside from a few bulbs and a phlox leftover from the owner before him, and those the prior owner moved around haphazardly while doing yardwork. Add to that one bush dead from an attack of the Mold Spores of Doom and the phlox taking a heavy hit when we tore out and repoured the front walk, and you had some very sad flower beds indeed. 

With money being tight, I didn't want to buy many plants. I did cave and buy 3 of a purple perennial that grows to about 12" tall and has a single little purple flower on the tip of each stem. Thank to brain fog, I can't recall the name of the plant tonight, but they are very pretty and do well in the weather around here with minimal watering needed. My aunt gave me a few flowers from her own yard that needed thinning out, plus some snapdragons she bought for me, and my neighbor gave me a decent sized hosta when she thinned her own plants. All in all, I'm quite happy with how my front flower beds have come out.

Next up was starting the veggie patch out back. I wanted to do some potatoes, more carrots, garlic, and onions this year, so I got my hands on various pots and huge plastic containers to use as deep pots. These large totes are fantastic planters- just drill some holes in the bottom, prop up on some scraps of lumber to allow them to drain, and fill with dirt. 

Prepping the totes:

All planted and ready to grow!

The other big adventure going on right now? I've re-started Physical Therapy. PT is always a LOT of work, but very much worth it. It helps me maintain muscle mass (which has a tendency to vanish on me, between the CRPS and the scar tissue from all the surgeries), it helps keep my pain under control, it keeps me flexible, and more. This time around, in addition to the normal strengthening goals, we're working on improving my walking, including trying to get me down to using 1 crutch for real distances. Yesterday was my first appointment for this round and while I didn't hurt any extra last night, I'm paying the price today with overly tight muscles across the front of my thighs. I know from experience that that will lessen in the next few weeks, but right now my shuffle looks more like a drunk zombie lurch than a graceful shuffle. Now to just hope no one thinks I'm trying to eat their brains... 

3 Months Post-Op

It's been a bit over 3 months since I had the Spinal Cord Stimulator put in, and I figured I was past due for an update on how things are going with it.

First off, I am in love with it. I did a LOT of quibbling with myself over whether or not to go ahead with the surgery, as my dear friends at the Chronic Bitches can attest (I'm lucky they didn't disown me during all the quibbling and panic attacks), and I couldn't be happier with my final decision.

I do still have worries at times. The biggest of said worries is that I now have occasional back pain right where the SCS is attached to my spine, and it's clearly a bone sort of pain. I have had mild Degenerative Disc Disease for years now (which is when the spine shows more wear and age than would correspond to your biological age), but it's never caused hardly any pain, especially compared to everything else. But since the surgery, the random back pain will just... happen. Usually out of the clear blue. And it's a very precise location. I have theories as to why, including that my body has a warped sense of what bones should feel like thanks to all the hip shit I've been through, but when you get down to it, it's very transient (it usually disappears within a few hours and the longest it's lasted was less than 8 hours) and it's a hundred times easier to deal with the CRPS pain is.  I imagine if I already had back pain issues, I probably wouldn't even notice it.

As for everything else, it's going well. At the 12 week mark, I was allowed to remove my back brace, though I stayed on restricted movement until I saw the surgeon again at 14 weeks post-op. At the 14 week visit, he did a quick exam then set me loose. I now only need to see the surgeon every 6 months to make sure everything's still sitting correctly and working well. The only lingering restrictions above and beyond the ones already there from the CRPS and hip issues is limitations on my bending. I can bend and twist most ways, but "extreme bending and twisting, and twisting while bending" are prohibited. In other words, no real change to daily life, just don't take up modern dance or yoga, lol. Easy enough to deal with, I think. I am, however, clear to try tai chi if I improve enough to manage the weight shifts on my bad hip! I'd love to give tai chi a whirl one of these days. 

My pain is still under better control than it was previously. We've briefly added back in the Sympathetic Nerve Blocks again, primarily for the boost to blood flow to my legs that they provide, but will be stopping them again briefly (it's a long story). Having the SNBs, the SCS, medications, and increased movement again is definitely a great combo for me. My legs feel better than they have in 3 years, and I'm excited to see where adding in physical therapy will take me. 

I got to help pay back all those people who helped educate me along this journey, too, about 2 weeks ago. I got a call at noon- the patient who was going to come assist with a Question & Answer session hosted by my doctors office (they do these about once every other month or so, and a patient who has a SCS, one of the doctors, and the Boston Scientific reps give a presentation then answer questions from prospective patients) got sick and had to back out. I had attended one of these before my surgery and found it very helpful, so when the guys from BS asked me to come help out, I was thrilled to. I even got a bit of a bonus out of it myself- the guys from BS showed me some nifty tricks with my remote, including how to change the button volume and the screen brightness! 

Overall, the SCS was the right decision for me. I firmly recommend that if your doctors feel it's the right step for you, give the trial a go. That's the best part of a SCS- you don't need to have major surgery without knowing if it's the right thing for you. The trial will show you that. Just because you do a trial doesn't mean you have to have the surgery. Plenty of patients either don't get sufficient relief or dislike the sensation and stop after the trial, never moving on. That's perfectly fine and insurance companies expect it to happen sometimes. I do recommend checking your surgeons success rate before going with any one doctor. I have learned that success rates can vary as much as 40% from one doctor to another, and that's mostly due to the method used to insert the wires and how good the doctor is at finding peoples "Sweet Spot", ie the best place to put the wires to get optimal pain relief. If you're unsure on the success rates of the local surgeons who did the implants, try contacting a sales rep for a manufacturer. My reps from BS know all the local surgeons who do the final surgery as well as knowing the doctors who do the trials, and they know who's worth seeing and who isn't the best. They a treasure trove of information. 

As always, if you have ANY questions for me, feel free to ask! Just check back for a reply to your comment if you leave one. Blogger doesn't give notifications that your comment has been replied to. :) 

CRPS treatment part II

This post has been a long time in coming- part I was done months ago, but I confess to starting this section, and then managing to forget all about it. However, now that I'm 3 months post-op from my SCS surgery, my doctors and I have decided to resume the SNBs to treat one or two symptoms the SCS doesn't yet cover (mostly just blood flow issues- I have much better blood flow to my legs when I get the injections than when I don't). And so I decided to celebrate my return to Sympathetic Nerve Blocks by finishing the epic post on them. 

3) Sympathetic Nerve Blocks

These are a type of injection that goes in from the back, directly next to the spine, into the sympathetic ganglion nerve bundles that branch off the spine between the spine and the internal organs. These injections should always be done under fluoroscopy, a type of x-ray, for safety considering the proximity to organs and the spinal cord. The mix of meds injected includes a local anesthetic to numb the nerves to ease the pain from the injection and anti inflammatories to reduce inflammation in the nerves of the sympathetic nervous system. By slowly reducing inflammation in the nerves, the pain and other symptoms of CRPS can be reduced.

Like all treatments for CRPS, the results tend to be mixed. Some patients find them nearly miraculous, and having 3 or more succesful injections within 1 year of onset of the disease has actually be found to prompt remission in a few lucky patients. Most patients recieve partial relief and find them a valuable tool. And some people recieve no relief from them, just as with all types of treatment for any disease.

The sooner into the course of the disease the injections are started, the more effective they are, in general. However, that's not a hard and fast rule of thumb- I began recieving nerve blocks more than 6 years after the onset and I get decent relief from the shots (I personally find them most effective on the burning type pain, the swelling and discoloration, and the allydonia). I'm a firm believer that if there are no contraindications, such as allergies, that they are worth a try, especially in patients who are within 1 year of onset. I'm not going to lie, though- the first shot isn't always going to work. It can take up to 3 tries to find the right vertebrea to target, as not everyones anatomy is identical. If, after 3 shots, there is still zero relief, then most doctors recommend discontinuing the shots. The first shot usually gives about 1 hour to 1 day of relief, and that's fine- the effect of the injections is cumulative and after a few rounds, I get 4 weeks from them. Between 4 weeks and a few months is the norm for duration of relief once you've recieved several injections. 

Since the doctor who does my SNBs is an amazingly awesome guy, and a massive believer in SNBs, he actually took pictures of me during the injection process for me to share with people. (Doc is such a big believer for a reason- he started his career as a pediatrician, and actually was my doctor when I was a little girl. He developed CRPS type I after breaking his ankle years ago. Due to his connections in the medical field, he had a diagnosis and his first injection within 1 month of onset. He got lucky, and went into remission and changed specialties right after, to help others recieve proper pain care. I love this guy for so many reasons!)

Step 1- An IV. Most patients prefer to recieve a small bolus of pain meds to relax them and help dull the pain of the shot. I'm a crazo, though, and my IV contains only saline, to help offset the fact that my already low blood pressure loves to drop right after the injection. Works like a charm for me, and I find the pain of the injection to be very transient. If you choose to recieve pain meds in your IV, you will need a driver to take you home and your appointment will take about twice as long. 

Step 2- Get comfy on the table under the floroscope machine.

Step 3- The assistant will prep your back using the same type of scrub as before a surgery. My doctor likes to mark the right spot for the injection first, by using a small piece of metal and quick X-ray via the floroscope to make sure he's got the same spot as prior injections, then he'll put a small dot with a permanent marker on the spot, then they prep the skin. 

Step 4 (optional)- Numbing the skin with lidocaine. This is totally optional and only some doctors even offer it. I'd skip it even if it was offered- frankly, the lidocaine will only reach 1/3 to 1/4 as deep as the actual nerve block needle goes, so all this does is numb the skin to the tugging of the needle. 

Step 5- Inserting the nerve block needle. As I've mentioned, these needles are long, but they are thin and flexible. While inserting, the doc will assess several times with the floroscope, to make sure he's in just the right spot. The needle will actually go in to the side of the vertebrea, then hit the side of the bone and use it's curved shape to curve under the spine, allowing it to access nerves trapped between the spine and major organs.

Step 6- Checking final placement. When the doc thinks the needle is in just the right spot, they will remove the metal, inner portion of the nerve block needle, leaving a thin plastic catheter behind. They then inject a teeny bit of dye and use the floroscope machine again to confirm the needles placement. If the dye is in just the right spot, the doc will then inject a teeny portion of the nerve block cocktail and wait a few minutes. This is to make sure the needle isn't too close to any major blood vessels. If it's too close, then the medication can get sucked into the blood supply and cause ringing in the ears and a metallic taste. If all is good, after a couple minutes of waiting to be sure, then the doc moves on. 

Step 7- Inject the full cocktail. They like to keep you laying flat for a minute or two, to let things soak in, then all is said and done and the doc will remove the needle (which is quick and easy). 

Then you're done! 

Post-op... Again

This is me, after all, and random surgeries are as much a part of my life as anything else at this point. This one was #9 in a hair over 9 years, and it should have fallen in the bottom half as far as how complicated/serious/painful it would be. (Simple gallbladder removal as the pesky thing was filled completely with large stones.)

Once again, this is ME. I should have known a simple gallbladder removal wouldn't stay simple for long.

Surgery was Friday, at a local hospital. Of course, the surgeon I was seeing came highly recommended, but he doesn't operate out of the one local hospital I've had good luck with. Fine. Fingers crossed, things won't totally suck. I should have known I'd be wrong. Don't get me wrong- the surgeon, anesthesiologist, and nurse anesthetist (who is actually a family friend) all did great jobs. But the pre- and post- op groups? Were horrific at their jobs. Epically so.

The nurses refused to give me proper pain meds, despite them being ordered for me. No joke- they refused to give me the oxycodone the doctor ordered for me because I had already been given tylenol in my IV... even healthy patients aren't supposed to manage immediate post-op pain with 2 tylenol. At one point, I had to get up to pee, and before I even made it to the door of my room, I was bent in half, sobbing in pain. With my history of extreme pain, it takes a LOT to get to me. Plus, I now have the SCS implanted, and it allows me to get some pain coverage in my stomach, so I had it jacked as high up as I could get it to go. 

It didn't help that my internal organs are more affected by the CRPS than we ever imagined. The air pressure from the laparoscopic procedure should not have caused such extreme pain for the length of time that it did, but it did, and the fact that the SCS helped cover that pain, along with the way it presented, taught us that my organs are more sensitive to pain than we knew.

Also,  never, ever, ever trust a nurse at a post-op unit to understand the words, "I can't take the pain, somethings wrong." They blew me off and assumed I was making it all up. It finally got so bad my mom convinced them to release me, so that she could get me home and on to higher doses of pain meds. (Two low dose percocet shouldn't be a "much higher dose" than what a hospital gives you in post-op....) They were giving me 1/3 of what I should have been getting at the hospital. Once I got home and had access to heating pads and actual meds, I could breath again. Sad. 

I did learn one thing from all of this: to only have surgery at a few, select hospitals. I don't care how fancy they are, they can still be a nightmare waiting to happen (I'm looking at you, Rochester Methodist...). Stick to what you know works. Any future local surgeries will held at a single hospital, the place that did  my SCS. Because, well, this is me. There will be more surgeries, it's just a matter of what they turn out to be for. 

Temporary Pets and Shiny Objects

Obviously, I haven't been around much since the SCS stuff all got into full swing. At first it was basic exhaustion, then, well, honestly? I got out of the habit of posting. Anyways, I figured I'd share some of the crazy fun I've been having while hiding from The Cold. (Seriously, we spent multiple days this month colder than the friendly state of Alaska.... I live below the Mason-Dixon line. That sort of cold ought to be illegal.)

First off, a friend wound up living here for a few weeks, along with her hysterical cat, Annabelle. Belle appears to have forgotten How to Cat somewhere along the way. Why, we don't know- she grew up with a litter then was adopted with her sister, so the silly dog behaviors are just fun. She plays fetch. She also loves to sit on peoples heads and watch TV. Like I said, silly cat. A standard day in the life with Ms Annabelle around went a bit like this:

"This is my toy. No, I will not share right now, but I will stare you down."

"I have brought you my kill. Now I must stare at it to make sure it's dead."

"It's been 2 seconds- why haven't you thrown the octopus yet?!"

In between being owned temporarily by a cat, I made an awesome discovery- I can spin again!! On my wheel!!!!!! Yes, that requires that many exclamation marks. My fabulous Lendrum DT spinning wheel has been languishing for the last 2 years, since my RSD/CRPS flared completely out of control. The foot and leg motions needed to use it were horribly painful. In  the 2 years before the SCS surgery, I managed to turn a mere 1oz of fiber into yarn. That's about 20 yards, for what it's worth. You can't even knit half a fingerless glove with that amount. Since the SCS was implanted? I can crank it up, drown out the pain, and treadle for hours. In 3 days I managed to spin 4oz of alpaca roving and 1oz of a baby camel/mulberry silk blend. (And yes, fiber counts as "shiny", as shiny applies to all things good and awesome.)

The alpaca:

Part of the camel/silk (I'm now up to 1.5 spun of this):

Ms Annabelle disapproved of the spinning, and instead felt I should stop moving my legs so she could rest there while I adored her.

This is so much FUN. I'd almost forgotten how easy it is to loose yourself in a bag of fiber for hours on end. I feel like this surgery has given me a part of myself back. Still no way of knowing how much mobility I'll really regain, but if I get back just this one thing? The entire surgery was worth it. 

I'm officially a robot! Part II

... and, continuing onward...

Of course, becoming a robot means I need a way to program myself. So I now have a handy dandy remote. The remote about the size of one of those old rectangular brick cell phones, the ones that were all the rage before flip phones hit the market big time. I have 3 programs on mine, Smooth, Thumpy, and Massage. My trial unit had a 4th option, but I never used it, so it's not on my permanent unit. The remote does show the battery life on both the remote batteries and the stimulator batteries, which is completely awesome.

I've had 1 check up, about 3 days post-op. Basically, they wanted to make sure the stimulation still felt good (it does!), that my incisions looked good (they did), to remove the bandages, and check my programming. I've been feeling the paresthesia in my stomach a good bit, and it can, and occasionally does, make me nauseous, so the Boston Scientific rep came in and tweaked my programming some. He backed down the intensity in some ares and upped it in others. I still get the occasional upset stomach, but I can now get meds in me and turn off my stim for a few minutes to combat it. Before I was heading straight to vomiting. At the check up, I also got to see the fluoroscope images from my surgery after the wires were put in. I love that on the right hand side of the image, you can make out the circular sections of the discs. On the left is the boney protrusions off the back of the spine. And right between the two sections, you can see my nifty new, permanent, wires.

The incisions don't look half bad, either, under all the Steri-Strips. (Steri-Strips are a product used here in the US to cover large wounds, especially surgical wounds, after things like stitches or staples are no longer needed. They give your skin a bit of a boost, but less than things like staples/stitches, and fall off on their own in 3-10 days.

Weirdest part of it all, though? Not only can you see/feel the outline of the brains of the unit, you can see the wires under my skin as faint grey lines. If you look carefully, they form a large U shape under my incision. VERY odd to look at. It was more obvious the first few days due to swelling.

All in all, so far, I'm happy with the choice I made. My pain in my legs is between a 4 and 5 most of the day, instead of  the 6 to 8 range. I didn't get down to 4 hardly ever before Robot Day, so I'm hopeful. Now, to heal enough that I can try physical therapy and walking! My post-op pain is diminishing rapidly, my abilities are already on the upswing (I can bend my knees further when standing and bear more weight when walking), and I'm excited to see where things go from here.

I am now officially a Robot! Part I

Or Cyborg, take your pick. My uncle keeps insisting cyborg is more accurate, so of course, I'm sticking to using Robot just to annoy him. This is the only logical pathway when family is involved.

Surgery was about a week ago, on Dec 27th. The hospital was amazing. They dealt with my panic attacks extremely well. They made sure I was kept in the loop before hand, that I got to speak with everyone as I requested, they even offered to give me my versed (anesthesia that causes memory loss afterwards) dose about an hour before surgery to knock me out. I wound up choosing to wait a little bit to get my versed so I'd be sober when speaking with the doctor. The surgeon gave me some input on where to locate the brains of the unit, I chose my back above the waist. The butt cheek is a much more common location, but I didn't want to be sitting on the unit in case it winds up being sensitive. Sensitivity at the implantation site is not uncommon, especially for the first few months. They also usually locate the units on the right hand side, but I chose the left to keep it away from the hardware in my femur. 

The rep from Boston Scientific was there the day of surgery and came to visit me beforehand. He assured me my new unit was fully charged, then took it out of the box and showed my exact unit to me less than 40 minutes before it entered my body. It was, of course, still hermetically sealed, but still neat to see through all the layers of plastic. 

I'm told I make blue hair nets look fashionable. Also that I'm remarkably calm pre-op, despite the whole panic attack thing going on. (My vital signs gave me away, but I am proud to say I kept the hysteria to a minimum.)

Post-op, the awesome people at J Hospital hooked me up with paper tape bandages. They were awesome! I tend to itch like a crazy person under plastic bandages like Tegaderms, so I really appreciated them finding me an alternative. 

I wrote this whole post, then realized it had become extremely long. So I'm posting half tonight, and half tomorrow. 

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.

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.

SCS trial, days I & II

I know I missed a post on day I, but I confess the meds they gave during the insertion made me very, very tired all day, so I fell asleep without managing a post yesterday. So I'm going to cheat a bit and post 2 days worth at once. 

Day I

The insertion started off the same way all my nerve blocks have other years. They started my IV for the procedure in a side room, then the Boston Scientific (the manufacturer) rep came in to make sure I didn't have any more questions before we started the trial. My biggest question had been that the position I was going to be in for the lead insertion is a pain relieving position for me- what if I couldn't tell well enough that the wires were in the right place? They assured me they were looking for coverage of the limbs with CRPS by the tingling sensation, called paresthesia, that the wires cause and not instant pain relief. 

Once my few questions were answered, we moved to a procedure room. I was laid face first on a procedure table that has a fluoroscope parked over it and I was hooked up to monitors. They gave me some partial sedation for the procedure, using a fast acting narcotic that knocked me back a few pegs. I was draped from head to toe with only a small portion of my back exposed, then the skin was cleaned. They used a bit of local numbing medication in my back to help dull the pain, too. 

The doc came in and inserted hollow needles into my back at a shallow angle (nearly parallel to the back, instead of perpendicular like many docs do- perpendicular can cause issues with insertion). Once the needles were in, he double checked the locations with the fluoroscope  then wires were fed in through the hollow needles into the epidural space of the spine. Once the wires were in, the hollow needles were removed, leaving the wires behind. They double checked the location of the wires with the fluoroscope, then the BS rep hooked up the wires to current and we checked for paresthesia coverage. It took a tug or two on the wires to get the proper coverage, but once we were golden, they stitched the wires to my back then covered me from my bra line to half way down my butt in tape. My mother later got a good laugh at my expense as they quite literally put tape in my butt crack. Gee, thanks doc! 

Once I was cleaned up and good to go, I was walked down the hall to small office to meet again with the BS rep. The rep hooked up the temporary unit, showed me how everything worked, including the remote, and he gave me his cell phone number in case I ran into any questions along the way. After that, they scheduled me to come back Monday to go over the experience and have the wires removed, I was given a prescription for antibiotics to prevent infection, then I was sent on my way. 

I'll admit when I got home, I was extremely sore. Moving was difficult both due to the soreness and due to fear of moving the wrong way and causing a jolt. These temporary trial systems aren't anchored nearly as well as a permanent unit so it can be pretty easy to give yourself a little burst of current. I haven't found any of these little jolts to be painful, just startling. A single vicodin took care of the back pain to the extent I was able to get up and move around, though for the first part of the day, I needed help getting up and down off the toilet. I even went out for dinner! Overall, a fairly uneventful day. Everything went very smoothly, and I could tell it was going to be easy to get over the initial soreness of the wire insertion. 

Day II

Woke up today pretty achy- I'm a back sleeper and sleeping on top of the wires and belt for the unit (the temporary unit is worn on a white velcro belt- very fashion forward ;) ) left me sore. The soreness faded quickly and I was back up and about. I even helped a tiny bit with pie making at my moms for Thanksgiving dinner. I survived dinner at my grandmothers just fine with no bumps or major jolts. As the day has gone on, the pain from the wire insertion has faded more and more. 

I'm not yet feeling any major pain relief from the hip pain, but the feeling of my tibia and fibula being shattered, which is a rather common issue for me, is greatly reduced by the paresthesia. I'm very hopeful that with time, more of the pain issues will fade. Many CRPS patients don't report full pain relief immediately- some people fell no pain relief for up to the first month. So since I'd doing so well thus far, it makes me hopeful. 

My biggest concern with this whole thing has been that I wouldn't be able to handle the feeling of paresthesia. Some patients fail their trial despite excellent pain relief because the buzzing drives them crazy. So far, the buzzing is weird, but not bad or crazy-making for me. I think that in time, it would just become my new normal. Plus, if I start feeling jealous that other people get to have normal sensation in their limbs, I can just turn it off. The joy of having a handy remote control. 

So far, so good. I'll keep everyone updated as we go. 

CRPS/RSD Treatment, part I

I've been promising an overview on CRPS treatment options that currently exist and keep forgetting to do so. I wanted to make sure to get to this before the end of November and the end of CRPS Awareness Month. I won't be going super in depth into anything here in this post, but please feel free to ask any questions. I'm always very happy to help. 

1) Medications

1a) Anti-epileptics

Anti-epileptics, such as Lyrica (pregabalin) and gabapentin, are used to control neuropathic (nerve-based) pain. They can be disorientating at first and I always recommend not planning on driving when very first starting or making a big dose change. I actually find a huge dose change on these to be as or more disorientating as a change of my narcotics dosage. They are usually a first line treatment and can be very effective. Lyrica and gabapentin are related, with Lyrica being the newer of the two. Lyrica is taken 1-2 times per day, and gabapentin is taken 3 times a day. 

1b) Narcotics

Narcotics are very commonly used in the treatment of CRPS. CRPS tends to be very resistant to treatment, so the big guns tend to be necessary to provide even a sliver of comfort to the patient. There are short acting medications, like Percocet (oxycodone) and Vicodin (hydrocodone), as well as long acting meds like Oxycontin, MS Contin (morphine), fentanyl patches, and Butrans (buprenorphine patches). Many patients use both a short acting and a long acting med. The long acting medication gives a blanket level of pain relief and the short acting is for flare ups of pain, also known as "Breakthrough Pain". These meds come with a host of side effects such as constipation and legal ramifications (many doctors require random drug screening while you're on these meds, to make sure you're taking your meds on schedule at the correct dose and only your meds), but they can be extremely useful. 

1c) Others

There a couple other types of meds used in the treatment of CRPS. These can range from anti inflammatories like Meloxicam to the immunosuppressant MTX (methotrexate) to a class of antidepressants called SNRIs. I currently take the SNRI Savella and while I find it doesn't lower my pain any it does make me care a lot less about the pain and it makes it easier to get out and do things despite the pain. 

2) Physical Therapy

PT is ESSENTIAL for the proper treatment of CRPS, but it must be done correctly. Things need to be taken slowly and surely. Very slowly. I've not had the best luck with PT centers that specialize in sports injury patients. The best therapy I've personally found is at a local rehab hospital, where most of the patients are transitioning between a hospital stay and going home. The biggest thing is to find a physical therapist who has experience working with CRPS, which can be tough to do. If there's no one in town who's already familiar, find a therapist who is very curious and willing to do some research and learning. I always recommend warm water physical therapy as it helps with allodynia in addition to pain. For more details on PT and CRPS, feel free to check my other blog posts using the tag "PT".

I was going to try to fit this in 1 post, but even keeping things short and sweet, it's becoming a bit epic in length. To keep things easy and readable, I'm going to break this up into 2-3 posts. 

News on the SCS trial

Just a very quick update on the Spinal Cord Stimulator trial front- I got a call Friday afternoon to schedule my trial. There was back and forth as they wanted to schedule me more than a month after they said they would, but in the end, I was scheduled for my trial to start Wednesday, November 27th, at 9:20am. Yep, in 2 days. My trial will likely be on the very short side, all of 3 days, with the end likely being Friday afternoon. My doctors office prefers to not leave the devices in long for a variety of reasons, including high infection risk and wires coming loose. 

I'll be posting pretty often about the experience for those who are interested. Frankly, I've never met anyone in person who has a SCS for CRPS. I've met a few people who have them for spinal issues, but not CRPS, so I'm very curious. 

For anyone who's curious, I went searching and found a picture of someone with a trial unit in. Note: this is not me (obviously). I will be posting pictures of myself with my trial unit once it's all in, though. 

My parents will both be staying at my house for Wednesday and Thursday night, then if my trial is extended for any reason, we'll decide from there who will be staying with me. During the trial, I can't bend, twist, raise my arms above my shoulders, or lift anything over a few pounds. This is because the wires going into my spine will only be anchored to the skin with 2 quick stitches, so any of those maneuvers could easily dislodge a wire and cause pain, spasms, and other, more serious, complications. So having the parents here will be very important to make sure I can safely get around and so I'm not trying to do things like cooking. 

I don't think I'm asking for much

One question that occurs to me time and time again is: Why is it so incredible hard to get the most basic of help? When my health issues began, doctors skipped important tests, prescribed the wrong meds, blew me off. My normal day to day existence was hell on Earth and healthcare providers blew me off as a malingering fool. I was choking on solid food and one doctor ran 3 simple blood tests then came back to me and told me I'd "simple have to learn to deal with it". Situations like this are so common it's become a monthly thing in my life.

This months craziness was at the hands of my Traditional Pain Management physician (TPMP). My friends have a different name for him, but I'm trying to leave major profanity off my blog (or at least use less than I normally do). For 2 or 3 years now, I've used a topical arthritis gel called Voltaren. It's an NSAID (non-steroidal anti-inflammatory drug) and while it's active ingredient is hard on the organs when used orally, in topical form it has very few side effects and is incredibly safe. Well, as long as you don't accidentally lick your hand. Then it might give you headaches... And yes, baked cheetos were completely behind that particular accidental discovery.

TPMP is normally a big fan of options that aren't going to murder my liver. Reasonable, right? He also likes the least aggressive option. Also reasonable. Voltaren fits both of those categories very, very well. It's only drawback is price. Woah, is it pricey. So I always make sure, when I need a refill, to get it done when I have a full tube, or about 2 weeks to 1 month at my current rate of usage, left. That gives me time to get insurance coverage lined up. Three months ago, I asked TPMP to call in a refill to my local pharmacy. "Sure!" Alright then, check that off my list. Except.. it never got called in. I called the docs once that month, they apologized, said they'd call in right away. Never happened.

The next month rolls around. I ask again in person for this med. Get another apology and assurance. Once again, nothing. I am now out and using a tube left over from when my mom hurt her ankle. I have called nearly once a week for the last month. Each time, I'd get an apology, and assurance, and no prescription. They've called in other things to the same pharmacy during this time, so it's not a file error. I called again on Thursday and had by far my worst ever phone call with a doctors office. The woman who answered the phone informed me that there was no record of me ever calling or asking for this med, so clearly I was just lying. When I called her on calling me a liar, she denied it, then placed me on hold with zero warning.

Eight minutes later, someone else finally picked up. I got another apology, another assurance, and still no bleeping med! In order to get a refill, as I've now decimated the last tube I had access to, I had to call the clinic after hours and demand the answering service contact the on call physician. He agreed to call it in, but failed to put a quantity on the script, so I ended up with 1 tube. Which means another fight for a script. I see TPMP in person Tuesday- I don't think he knows quite what's coming. Because you had better believe there will be a riot act read and I will NOT leave without a paper prescription for the Voltaren gel. It's against their policy to write a paper script for anything non-narcotic, but I don't really care. I'm DONE. We play by my rules now.

All I want is correct medical care. It doesn't seem like much, but wow, is it ever. And it seems to be impossible for the vast majority of doctors and their office staffs to provide. (To be fair, sometimes it's a great doc and bad staff, sometimes it's great staff and a bad doc, and sometimes they both stink to high heaven.)