Wednesday, September 12, 2012

Step #1: epidural steroid injection dead ahead - if I can ever get it

It could be 2 or 3 WEEKS before I could get in for an injection to keep surgery at bay. What am I supposed to do until then? I've got almost no paid time off left. This is horrific.

Kate took me to the Spine Clinic on Tuesday and we got a look at the MRI showing extensive spinal disc degeneration and a bad herniated disc in my lower back

The doctor's suggestion is to first take a conservative approach (to relieve the extreme level of pain I'm having to medicate/endure). That involves a steroid injection (epidural steroid injection [ESI]) at the point where the disc is pressing on the nerves causing the numbness, loss of muscle strength and intense pain in my hip and down the side of my left leg to my foot (and to a lesser degree, the same in my right leg). My entire left foot is numb and has been for nearly two weeks now.

This first step is to attempt to get me back to 80-90% of my prior (already compromised with RA) function. He said this is a roll of the dice; some patients with as much damage as mine see an eventual retraction of the disc once it's off of the nerves from the steroids reducing inflammation, but he's also seen patients with less damage not respond much to the steroid injections. He said my herniation is a "fairly good size," and was cautious about suggesting any long-term benefit of ESI.

In my case he advises only doing one injection to see if I have some relief -- it would take about week post-injection to know if it is working. If there is relief for a length of time, I go on to finish the series of three injections over a year. If still have pain after a week, then he would want to move on to a surgical approach ASAP. He also noted that the overall response/prognosis to the injections and surgery is about the same; though obviously surgery requires more recovery time. 

We decided to cross that bridge when we get to it.  We'll know soon enough.

Unfortunately the damage to the nerves that is causing the "dead" left leg may be permanent; the numbness may or may not go away in the long term. 

The doctor said that the steroid injection will definitely have an adverse impact my insulin-dependent diabetes for more than a week, so I have to monitor that closely and probably work with my endocrinologist on that.

We left and got digital copies of the MRI and x-rays of my back done at the ER and later after the rheumatologist ordered ones of the correct area of the spine. You'll recall that the ER trip was memorably atrocious.

For now, what does that mean since I've been out, home from work going on two weeks now?

1. First I have to get the spinal steroid injection. They are so backed up with appointments for this kind of injection (it requires someone to drive you home and watch you, so it's more involved than just the steroid shot I got in my hip about a month ago). It looks like I cannot get an appointment until next week. The scheduler is going to call me with either a) an appointment at a center not far from our house (hopefully) next week, or b) any first-opening they may have this week at the hospital.

NOTE: It's been 24 hours so far and I called and found out there still has been no response in terms of finding me a slot. A sympathetic rep on the phone said she knows personally about the issue getting an appointment for this particular procedure since she's had it herself. She took pity on me and emailed the person at Orthopedics personally while we were on the phone to look into this so I don't fall through the cracks.

That means that until the injection, I'm in the same lousy, painful holding pattern I've been in since the acute ER trip on 8/31. No driving and telecommuting work only as I am able to concentrate, which has been sadly limited in duration. Writing this post has been arduous.

UPDATE (9/13): She called back and said it could be 2 or 3 WEEKS before I could get in for an injection!! What am I supposed to do until then?  I have to be able to work; I've got almost no paid time off left. I saw my rheumatologist this AM and she's going to make some calls to hopefully get me the ESI sooner.

UPDATE 2 (9/13): Can this nightmare get any worse? They call this afternoon and ask if I can go to get the shot at 2PM tomorrow. Kate is having her own medical procedure and cannot drive; my brother isn't here yet to help and watch me since there are side effects and someone has to monitor you after the procedure. Back into the queue.

2. Post-injection. If I am responding well, then I should be able to come back to work with a holding pattern of wait-and-see about whether there is any lasting relief. If so, then it would be a choice of continuing the series of steroid injections...and more waiting to see if the pain management holds and the disc stabilizes.

3. Surgery. If this ends up being the best option after the injection (Endoscopic Spinal Surgery), we'll cross that bridge to work up a plan for second opinions and timeline. 

The reality of living in a state where my status as a second-class citizen when it comes to recognizing my marriage hits home here. I've written an extensive post about how the Family Medical Leave Act is out of our reach in this instance. From my political blog - "Real-world discrimination hits home; report outlines just how far we are from LGBT equality."

We are strangers in the eyes of NC law. Many, many allies do not know this discrimination is legal. From NC state FMLA policy
Spouse – A husband or wife recognized by the State of North Carolina
Amendment One, passed in May of this year, ensures that our relationship will never be recognized by the state. I, and many people fought mightily to turn this hateful ballot initiative back at the polls, but we failed — and the fallout stains our great state, and now fails me in a time of need.
That’s right — my wife cannot take advantage of FMLA to care for me when I need to convalesce for an extended period of time after a surgery. My state tax dollars fund institutionalized discrimination. The sad irony is that if the roles were reversed, I could take FMLA because my employer has chosen to extend the definition of spouse to include same-sex committed relationships/marriages.

Moving on...

4. Rheumatoid arthritis pain. Since this horror is back because I’ve been off of these meds, I'm dealing with this as well. I cannot be on any rheumatoid arthritis meds for 2 weeks prior to any surgery because of the increased infection problem. My doctor said to take the weekly Enbrel shots if things get really bad. That can make me sick for a couple of days, but clears my system in a week, leaving me in a better position for surgery.

But taking care of #4 plus the steroid injection will (cross fingers) make it possible for me to be in better shape to think, drive and work in the near term. 

Double-cross those fingers. I need to be able to work.

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