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! 

Mall Revamp Brings Equality to Shopping

A local mall, the Kenwood Towne Centre, recently decided it needed a bit of a refurbish. Considering the mall had last been updated when I was a very little kid, it was likely past due for such a high traffic place. I assumed that like most overhauls of public spaces, they'd take the easy way out and just fix the cosmetic issues. Instead, the mall went above and beyond, in a fabulous way. 

This mall has a very peculiar set up. The second floor is twice the size of the first floor, and the half of it that has no first floor changes heights frequently as you go down the hallway. 

Stores on the right hand side of the hallway could be as many as 6 steps higher or lower than those on the left. This meant, with the old setup, that there were frequent stair cases. In order to get to stores when using a wheelchair or pushing a stroller, you had to follow the "Stroller Path", which was S shaped. To get a store not on the Stroller Path, you'd have to go one of the far ends, then double back on yourself, up to 10 stores, using steep ramps, causing excessive fatigue for a simple trip to the mall. 

This shot of the old pathways shows the height difference. If you look carefully, you can see 2 separate stair cases down the center. This was what the entire hall looked like, with a total of 7 or 8 stair cases. (This picture is not mine- it was pulled from the background of an old youtube video, as I never imagined I'd need a Before picture when the construction began!)

As part of their overhaul? They added a ramp every single spot they have stairs in this wonky hallway. 

These new ramps make the mall. It's fantastic! I can now get wherever I need to go with far less effort, and with no backtracking. I'm no longer constantly separated from my family or friends when I shop with them, allowing me to be more included. 

My hat is off to the folks managing the Kenwood Towne Centre. They did some pretty awesome things with this revamp, or should I say, reRamp. Now, if we could just get all public places to follow suit. 

Zebras DO Exist!

Today's THE day. The day of each year where I become even more loud mouthed than usual. Rare Disease Awareness Day. 

Not-so-Fun Facts, courtesy of The Global Genes Project:
- 1 in 10 Americans, on average, have a rare disease
- 80% of all rare disease are caused by genetics
- 95% of all rare diseases have not a single FDA approved medication
- 50% of those affected by rare diseases are children
- of those children, 30% do not live to see their 5th birthday
- approximately 50% of all rare disease have NO disease specific group supporting patients or research

It's a grim picture, all told, for those who suffer from a rare disease. Many don't even have a diagnosis, or suffer unnecessarily for years due to a lack of a diagnosis, due to current practices. I spent 6 years without a diagnosis for one of my rare diseases (RSD/CRPS) and 7 years without a diagnosis for the genetic skeletal disease I have (MFD). With proper diagnoses, I likely would have had fewer surgeries and a much easier journey. Yet, most doctors feel no need to ever look beyond the most obvious answers.

In fact, in medical school, they teach new doctors a phrase: "When you hear hoofbeats, think horses, not zebras." The gist is that when you see a set of symptoms, you should always assume the most common answer is the right one. The problem with the No Zebras mindset is that if you don't fit into a tidy box with perfect test results or a common diagnostic criteria list, you're not going to get help. Too many people suffer for years, even decades, because no one will look outside and see that one of those horses has stripes. 

When you find that one doctor willing to look past all the horses and see the lone zebra standing there, hold on tight. They might be your only hope for decades more to come. 

And the Games are over...

The Olympic Games, that is.

The Olympics are always an exciting time for me, for several reasons. First off, I enjoy a lot of the Olympic sports and they aren't ones you normally see on TV, like arial, bobsled, skeleton, ice dancing, etc. I have a blast getting sucked into the emotions of the athletes.

But the biggest reason the Olympics are one of my favorite biennial events? The Ravellenic Games.

First off, for those of you not familiar with Ravelry, it is one of the largest social media websites out there. And it's exclusively for fiber artists, including knitters, crocheters, spinners, and weavers. During the Olympics, a group of intrepid and very hardworking volunteers run the Ravellenic Games. The Ravellenic Games start when the Opening Ceremony of the Olympics starts and end when the torch goes out at the end of the Closing Ceremonies. The point of the Ravellenic Games is to challenge yourself as a fiber artist, just as the athletes are doing in their sports. We even have events, like the Shawl Short Track, the Lace Luge, and the Hat Halfpipe.

This year, the team I compete on, Team No Spoons (in reference to the Spoon Theory by Christine Miserandino), elected me their Fearless Leader. Okay, so the real title is "Team Captain", but "Fearless Leader" is just more fun. Team No Spoons is team for the group* the Chronic Bitches. The Chronic Bitches, or CBs, as we call ourselves, are a support group for chronically ill/disabled fiber artists who are a touch irreverent, fond of naughty words, able to laugh at themselves, willing to talk about anything, and, most importantly, incredibly supportive. I can turn to my CBs about anything and everything, and have for 4.5 years now. They are my rock. We share knowledge, tips of dealing with difficult doctors, discuss the frustrations of being ignored by yet another doctor with a god-complex. It's been a privilege getting to return some of that awesome support by leading the team.

I'm a rather slow knitter, and crochet is out as my autoimmune arthritis has my hands, wrists, and elbows extra swollen lately, so I picked small. I opted to knit Petunia the Patio Monster from the Big Book of Knitted Monsters by Rebecca Danger. She made out of a self-striping rainbow yarn called Serenity Garden, sold by Jo-Anne's Fabrics. 

Also during this years Games, I decided to do a bit of spinning on my trusty Lendrum DT spinning wheel. A friend bought me a batt (fiber prepared in a sheet) that is black alpaca overlaid in rainbow dyed silk. I decided to separate the silk from the black alpaca and spin the two separately, into different plies (the individual strands that are then together to make yarn). Then, once I ply the black and the rainbow plies together, and knit up the yarn, you'll get peeks through the black of a very vibrant rainbow. I'm happy with how it came out in the end- I have about 86 yds of a dk-to-worsted weight yarn from this. Though, I am quite glad to be done trying to spin silk in very dry air- it was Attack of the Static Monsters around here. The one night, my mom started laughing at me, and I looked down to find my ass being attacked by a glob of green silk- which had launched itself more than 3 feet across the room to attack me. 

The batt, as it came in the mail:

The batt, once I had separated the silk and the alpaca:

And finally, the final yarn:

I'm very happy with how my projects came out, and I'm very proud of my team. They are truly some of the greatest women I've ever had the pleasure of knowing, and it was a pleasure working with them during the Games. Can you really ask for more? 


* Groups are basically sub-forums within Ravelry- you have to go looking for the group you're interested in to read anything posted there. You can join groups to get them to show up on your main page when you log in, which is very useful. The groups represent a wide variety of interests, from the fiber arts related like lace knitting and Sock Knitters Anonymous to non-fiber arts topics, like politics, TV/movie/music fan groups, and even health/wellness groups.

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.