A CRPS Update

Hey everyone!

I had an appointment with a CRPS specialist/surgeon this morning and I wanted to give you an update on how it went and what’s going to happen in the near future

This is the first time I’ve been able to meet with a specialist that was extremely knowledgeable about my condition. After we talked for a bit, he basically confirmed my diagnosis and said I was a candidate for an electric stimulator that would be surgically implanted on my spine and would help to regulate the pain. Needless to say, I cried from joy and relief. 

This is fantastic news in that I have confirmation and a chance to improve my quality of life dramatically.  Though the surgery is going to be horrible, as, like I said, they have to attach something to my spine that will, as I understand it, send constant electrical shocks to help stop my nerves from firing crazy amounts of pain signals themselves. To me, any kind of needle is anxiety inducing. So, this surgery is deeply worrying and freaks me the fuck out. 

However, I have read some rather incredible success stories from people with CRPS who have gotten this done. While it isn’t a complete relief – there’s still a lot of constant pain – from what I have read, the pain goes from a constant 8 or 9 (out of 10). To a 4 or 5. 

It gives you the chance to live your life – I could go for walks. Go have a catch with my son. Teach him how to ride a bike. Cook for my family. Help around the house. 

And write. Write every day. Do everything I need to for you without worrying about the pain making me unable to function for days at a time just because I had to drive a car with my bad leg for 15 minutes to get medicine. Especially since, as he explained to me, narcotics don’t really help with CRPS – which is why I’m still in agony all the time, but getting more and more woozy as the medicine’s strength goes up. 

So what is going to happen in the near future?

Today, I had to drive myself to the doctor and walk a ton. Then I had to sit in a doctors office for 30 minutes on uncomfortable chairs that have sent my pain into overdrive. Which is what I expected. I basically need a recliner or I’m in agony and very few offices come equipped with La-Z-Boys. So today is a terrible day and, as I posted earlier, I will need the day off from sitting at my computer at all. 

In order to get the stimulator, I need to get a “trial” stimulator. While this isn’t as invasive a procedure, it involves a doctor somehow taking a needle and injecting a long temporary stimulator on my spine. This will be in there for a week and, if it works, they will move on to implanting the real device

I have to have one consult with the doctor who does the temporary injection before he does the procedure. Which means, once again, driving myself to the doctor’s office and going through what I went through today. 

This is going to happen in 2 days. Wednesday the 6th. So I won’t even be fully recovered from the visit today. But the sooner this gets done the sooner the pain goes away so I will do what I have to. 

Then, we get to some unknown territory. 

After the stimulator injection I assume I will need the rest of that day off. But, if it works, I should theoretically be in better shape for the next few days. 

Then they have to pull the thing out after a week. I imagine I will need a couple days to recover from that one. 

Next, after a while, I get the real surgery. The doctor said it could take me 4+ weeks before I’m able to function like normal. Or before I’m even allowed to. That means limits on everything – I even have to be careful sitting down so that I don’t upset the device and diodes. Or whatever they are called. 

As always, I will keep you in the fold with all of this, as it unfolds. I won’t leave you in the dark. And I will keep working as hard as I can to write every day I can. Or do a video otherwise, if able. 

Thank you all for being with me as I try to fight and eventually beat this CRPS bullshit. Your love and support gives me more strength than I can express so feel free to keep sending me those messages of encouragement. 

I love you all, and I look forward to finally getting to a place in the future where I can do this without it hurting me. 

If I don’t see you tomorrow, I will see you Thursday or Friday (as I recover from the 2nd doctor appointment this week)

All my love,

bathrobe