Hope

Wow, has it really been since September. I am a slacker. There actually has been quite a bit to write, but it has gone something like this:

Oh, I should blog about that! . . . . snore . . .

But there has been one really good thing that I'll start with: Matt is presently living in Utah. That's not the good thing in and of itself. The good part is that he went there to undergo a new-fangled treatment for pain. His Doc referred to him as a guinea pig. I don't think it's quite that bad. They've been using this therapy in Europe for some time and it just got FDA approval in the US last year. And I believe next year there will be an insurance code, so insurance will pay for it. It's totally non-invasive and has shown very promising (read, nigh on miraculous) results. (for those of you who don't know what's been going on with Matt, see this post)

So, what the heck (as the locals say), we flew to Utah (I have a new found respect for the wheel-chair bound . . . at one point they strapped Matt, straight-jacket style, arms bound and all and wheeled him backwards down the gangway in one of those super-skinny aisle chairs). He's been staying with my parents and undergoing daily treatment and I returned to Texas to keep the mothership afloat.

We'd heard stories of nigh-on miraculous healing and despite our best efforts to not expect him to get up, click his heals and dance jig singing hallelujah after a single session, I think we came with over-inflated hopes. When we think about it, it really has been miraculous (thank you all for your prayers). But the day to day has been more like two steps forward, one step back, and he's going to need more therapy when he gets home and may need to return to Utah for additional treatment down the road. But, the very good news? Whereas he went to Utah unable to walk, and hadn't walked in over a month, after one session, he was walking.

The pain has ebbed and flowed and he's dealing with severe atrophy and side effects as he reduces his uber-load of medications, but ever since that first session, he has been walking. That is miraculous. He's still in pain, but I think he's in less pain than he's been in about a year. That is miraculous. He's due back this Friday--we miss him and can't wait to see him, the boys are hoping he'll be able to wrestle with them and maybe even walk up the stairs to see Ethan's new bunny (a blog post unto itself), so we're cautiously optimistic. He'd intended to do daily updates while he's been in treatment, but as it's been so up and down, he hasn't quite managed that. So I'll post the two emails he did send out and post any more as they come this week. Please keep those prayers coming.

Calmare Treatment, Day 1:

Today I went in to the Spero Pain Clinic for my initial consultation for the Calmare treatment for the RSD in my left leg. I went in with a pain level of a 7 and have not really walked on it or been able to us my foot since the surgery on September 19^th.

They took my medical history with RSD and found that I was an ideal candidate for the treatment, but told me it would be hard to tell what type of success we would see right up front. They found the level on my leg where the pain stopped (about mid-shin) and placed the two electrodes on my leg. They turned on the machine and turned it up until I could feel it. It worked through a whole series of electrical impulses ranging from a light tingling to a zap that felt like a bee sting.

They continued to turn up the strength of the impulses throughout the treatment. To see how my body was reacting, they had me do some tasks or stimuli that were painful before the treatment. My wife rubbed my foot and pushed the areas that made me jump when touched. There was no pain or reaction. They had me stand up without my boot on, and I was able to shift all my weight, taking my right foot off the ground, without any pain.

At the end of the treatment, I had no pain and I was able to take 4 steps to my knee scooter. I then also took six steps out to the elevator. We then went shopping after the treatment, and I was able to walk around the store without assistance and my scooter for 30 minutes with minimal pain. I started to see some of my symptoms return, at that point, so I started using the scooter again. They symptoms slowly returned until they reached pre-treatment levels about 7 hours later. They expect that each days duration of time without symptoms to get longer.

Today’s first treatment exceeded all of my expectations and really is a miracle. I am going to continuing to be cautiously optimistic about tomorrow’s treatment. I am skipping the next two Lyrica doses under medical advice, so we will also see what affect that has on tomorrow’s treatment.

Matt

Day 2 - Tuesday, October 25^th, 2011

Today I went to treatment not feeling as well physically and using the knee scooter. During the treatment, I had less pain, but still didn’t feel great. I realized it might have been the skipping of Lyrica. Right after the appointment, I took my Lyrica and other meds as instructed, and I was feeling better physically and also realized that I was feeling good in the foot. During the rest of the evening, I was able to keep walking the whole time in the boot. I decided to take the boot off and was able to walk around on the carpet, do my therapy, and move it around more than I have, all with minimal pain. Leaving the appointment, I wasn’t too optimistic (they said I might have bad days), but it got better as it went and I have not used the scooter at all. My leg is very weak and atrophied, but I am able to use it like I haven’t in months.

Day 3 – Wednesday, October 26^th, 2011

I got up this morning and was continuing to feel good and did not need to use the knee scooter. I spent a lot of the morning outside of the boot doing physical therapy and walking around on it. My leg was fatigued, but not painful, so I made the decision to go to my appointment in my tennis shoe and my air cast. I went to treatment and it was a little painful, I may have let them turn it up too high. I went home after therapy and started experiencing a lot of fatigue and it started to spasm. It wasn’t painful, just a little annoying. As the evening progressed, the spasms got more violent and the RSD pain became pretty strong, and it was very weak and very difficult to walk on. I made the decision to put the boot back on to help hold it in place from the spasms. Emotionally, it was also a difficult evening because all had been going well, and now I felt like I was taking a step back. Looking back, I think that I pushed it a little too hard and I am trying to let it rest and take it easy. There will be good and bad days, and I had a really bad day, but I just need to stay positive and make slow, purposeful decisions and not try to rush things.

Day 4 – Thursday, October 27^th, 2011

I got up this morning feeling better than the night before. I am still in the boot and am resting it this morning, due to overdoing it yesterday. I am having problems with symptoms from withdraw from the Lyrica, but the pain is still very manageable, as compared to the past. I am able to walk on it in the boot with very little pain and sitting still, the pain is very much absent as compared to a few weeks ago. This is working, but it is going to be slow going and I just have to have patience. Today they added another set of electrodes to my foot for a total of two to help with the treatment.

Day 5 – Friday, October 28th, 2011

I am feeling better today with the withdrawal symptoms. I am about the same with my foot today. They added a third electrode today for my treatment and it is still feeling pretty good. I am still limited, but looking at the week and where I have come, I couldn’t even get myself onto the airplane a week ago, and now I am able to walk slowly, but for moderate distances in the boot. That in and of itself is huge and a big accomplishment. I was warned today that I could have increased pain this weekend due to the fact that I will have two days without treatments, but I will just keep pushing through and resting as needed. The week has been a little bit of a roller coaster, but overall, it has been more up than down.

Matt