Tuesday, April 29, 2014

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. :) 

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