another stimulator trial

So I have a date for my next stimulator trial – the trial for my lower back. It will be on September 10th at 12:30 p.m. Soon! I’m excited and hopeful. If I’m being honest, I’m not entirely looking forward to trying to wash my hair/shower with it in. BUT a small price to pay for the information we’re going to get.

Final day(s?) of stimulator trial

So today was a bittersweet day – the leads were taken out & they took away my nerve stimulation. Obviously that’s a bummer because it was helping my headache so much. Clearly, it had to happen because it’s not a permanent system…there were wires poking out of my body. But it was SO NICE to have less pain – it’s hard to go back to my ‘normal’ headache. Pssh. What are you gonna do?

Of course it is nice to have all the cords & my little box gone.

So in the end, it seems that the stimulator gave me about 70% pain relief, except with storm headaches (headaches while the barometric pressure is dropping), when I probably get about 30%. It’s pretty life-changing. Or I should say, will be pretty life-changing. I could definitely get used to it.

I spoke to my doctor today about my back pain. We were hoping that the cervical leads might affect my lower back as well. Obviously, that didn’t happen. But the back pain remains. It hasn’t been as big of a concern as the headaches because the headaches produce more pain. BUT with the stimulator in, on the normal days (w/o storms) I was feeling limited by my back pain. I had to come home to ice & rest before I could keep going & getting things done. Which, I know, boo-hoo for me. I realize that I might be asking a lot. I figure if it could help, and could drastically improve BOTH pain issues, why not get the most out of it? So we’re going to do another trial, this time for my lower back. That way we’ll either get good results, and be able to use the stimulator for both areas, or it won’t work. If the stimulator isn’t going to help my lower back, then I’ll feel good about going on to continue looking for other options for that pain.

We’ll do this trial before the permanent stimulator implant (obviously), and see what kind of results we get!

The taking out of the leads was a little…interesting. If you’re easily queasy, click away now. You’ve read the most important stuff.

We took out the cervical leads, and that was fairly smooth. Each lead was sutured in place, and as the occipital sutures were clipped, I started feeling warm & a little nauseated. I started to fan myself & told them how I was feeling. The first occipital lead is pulled out – I’m continuing to feel like I might pass out. But I know that I’m sitting down & just one more has to come out. I figure we’re good. Then the second lead came out, and sometime in there I passed out. I came to & they were lifting me onto the hospital bed (I had been sitting in a chair, leaning forward). I had some kind of vaso-vagal response. At least I didn’t throw up!

And  after half an hour or so, I was all good. The wires were out & we were on to talking.

I’m doing well — missing the nerve stimulation but feeling more hope than I have in a long time.

Stimulator trial — days 3 & 4

I’m back – yesterday a big storm came through. This wouldn’t be news, except that they really affect my migraines. The barometric pressure drop before the storm comes (up to 24 hours before)  makes my head hurt worse. Unfortunately, it seems that the stimulator doesn’t help *as much* for this pain.

Of course, for my trial I have to rate everything in numbers; the number of my pain out of ten. The percentage of pain relief I feel like I’m getting. I’ve talked before about why I hate trying to assign my pain a number, but REGARDLESS, it is helpful for explanations. So I think most of the time, the stimulator takes away 60-70% of my pain (I KNOW!), but before a storm it was more like 30%. So still better (I can check by turning it off), but not as much help.

Obviously I’m not complaining. But I’m trying to observe all kinds of situations and how my headache reacts to the stimulator. And this is an important piece of the pie, as it’s something I can’t control…the weather!

On all other fronts, I’m doing well – really still thrilled about the whole thing. And touched by the reaction of friends and family. My joy is their joy. I am truly blessed.

Day 2 of the nerve stimulator trial

Hello again my peeps!

I’ll try to update frequently while this trial is going on – hopefully it won’t be redundant. But I want to keep you updated on my progress, especially since I know SO MANY of you have been on this journey with me.

So, I am doing really well. The headache is down to a 1 or 2 (out of 10) most of the time. Generally it hovers around a 6, so this is MAJOR. I mean, seriously. This is better than the Botox was, and I believe it will continue to last.  I can’t stop smiling.

My neck & shoulders are still sore from the procedure, but advil is keeping it under control. My back pain isn’t helped by the stimulation BUT improving the headaches so much is more important. The migraine pain was far worse (did I just say WAS?!), and I’m still hopeful that we’ll find other solutions for my back.

Thank you for your prayers and support.

Just after the procedure

Hi everyone – I just got home from the pain clinic & the finished procedure. It went well, took longer than we had planned, but I am well.

The stimulator is working, at least to some degree – I’ll learn more after the anesthesia wears off & I continue to learn about programming the device.

We didn’t get any of the back pain, but the stimulator is having an effect on my head pain.

I’ll write more soonish when I know more. My neck & shoulders are very sore from the procedure.

Thank you for the prayers and support – they mean so much to me.

Another update

Hello lovely readers – is anyone there?

I’ve been telling you about the Occipital Nerve Stimulation (ONS) and how that was the next thing I was planning to try. Well the approval finally went through & my trial has been scheduled. The wires will go in on August 5th & we’ll try it out for a week or so. After that, we’ll see! Where we go depends on if it helps or not.

I am hopeful and really just can’t wait to get the trial started, to know if it will help or not.

(Paris pictures coming soon…really!)

A little of this and a little of that

So a few things have happened these past weeks – I’ve been kind of processing the more important things, and so nothing has been reported on my blog.

First of all, I went to see my neurologist on May 4th. We didn’t change much because I was going to see my pain doctor the next week (and the pain doc and I are working on making changes). My neurologist and I did work out a way for me to have magnesium infusions. I first had magnesium infusions back when I was inpatient at Chicago. What was fantastic about magnesium was that there were no side effects but it entirely took away my headache pain. Fantastic, right? Right. Unfortunately, I haven’t been able to duplicate the results with oral magnesium. ANYWAY, back to the infusions. I was hoping I could use the infusions for those tough-to-break migraines.

And so I found myself at the hospital, in the infusion center on the next Monday. And somehow, for some reason, it didn’t work. I went with a normal headache – not even a particularly tough one. Soooo that is probably a no go from now on.

Then Friday the 14th I had my appointment at the pain clinic. I had a horrible night’s sleep the night before and so found myself trying not to puke in the office. The great thing is that I didn’t, and just laid very still.    I wasn’t in the best of moods when my doctor came in (one HOUR later) — but we went onward and upward. We talked more about the RFA procedure, and I asked him where he was with the insurance company. He’s called 4x and said he waited on hold for 20 minutes or more each time. *sigh*

So we talked about where to go from here – he felt like if we went through with the RFA and I got 50% pain relief (best case scenario), we’d still be working on something else to take care of the last half. And so the last resort has arrived. He says that if I were his sister, he’d recommend going the route of the Occipital Nerve Stiumulator. This video explains spinal cord nerve stimulators, which are the same idea. Spinal cord stimulators came first, and then they started to be used for intractable headaches/migraines in the cervical area. We’re working on scheduling a trial, and from there the real decision making will begin. OR it might just not work well enough, in which case some other decision making will have to take place.

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In other news, we just got home from Paris a few days ago. I would’ve loved to have told you about it, but then I also am paranoid and don’t want people finding us and burgling us. So I will tell you now, after the fact. Spencer & I went to Paris – we were there for 9 days. We were able to go because he had a poster at a conference there; and after going to other very fun places in recent months, he has saved up enough frequent flier miles so that my ticket was paid for! Yippee! It was very fun, and I will post pictures/details soon.

Anticlimactic

So after all that, we didn’t actually do the RFA procedure today. I know! I can hardly believe it, myself.

After looking at my diagnostic results, my doc said that my insurance wouldn’t cover the procedure. Of course, they haven’t rejected it, so we have to work with them on the whole thing. Get a rejection, appeal, get their approval, whatever.

So, long story short – no RFA today. Hopefully RFA in the future. Even though the insurance company won’t cover it, my Dr. believes that it could have some real therapeutic benefit. Would it get rid of my headache? No, probably not. But it could cut a lot of pain out. So we proceed forward in trying to get coverage.

Meanwhile, we reviewed previous medications (from my stint a couple years ago @ the pain clinic), and are going to try out a few things that may or may not help. So for now, we try another long-acting opiate drug, to see how that pans out.

I’ll let you know when I hear more about the procedure. Thanks for your support!

All systems go…

Well tomorrow is the day for my RFA. Spencer’s coming with me, and is looking forward to watching them poke me with needles. I’m hopeful and yet trying not to expect too much.

Please keep me in your thoughts tomorrow morning at 8:30 a.m. I’ll blog about how the procedure went as soon as I’m able.

Here’s a video that makes me smile. I’m a pianist, and love music, so it may make me happier than most. But here is a fun video about music and taking the stairs…

2nd diagnostic today

Well today I’m going to make a more timely update.

Today was my second diagnostic at the pain clinic. This is a diagnostic for the possible radio-frequency nerve ablation. Today we did the same procedure as last week *except* they used long-acting anesthesia instead of short-acting anesthesia. Today it went better than last time, I think because I knew how difficult  it would be. Last week I wasn’t expecting it to be so painful. I’ve had some sustained pain relief today – not all the pain, and (again) not as much relief as I expected.

Maybe the theme here is that my expectations are too high?

I’ll call the doctor later this week and tell him the results of the procedure. From there he will help me to decide if that amount (and duration) of pain relief is good or not. That is, if the results would indicate success for the RFA or not. I’ll update when I have that information and have made a final decision.