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! 

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 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. 

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.)