Friday, January 7, 2011

Expectations and Recovery

Mine or others'?
Pressure from the inside...
and the outside...
I feel lost in my own life,
and I'm scared.
My body is in so much pain,
but my mind and emotions are in just as much turmoil.

Those around me seem to think that this surgery/device is some kind of "magic bullet" that's just going to make all of the pain go away. It's a blessing, yes... but it doesn't (and most likely isn't going to) completely eliminate the pain...

The neurostimulator trial resulted in a 4 or 5 day stretch without any debilitating migraines. I was able to do more, but I still had pain and restrictions/limitations... not to mention, the trial was less than a week long, so you can only tell so much. It is my hope that the permanent device (which I've now had in for 2 weeks) will reduce the pain to a manageable level, but I don't expect it to prevent me from ever having another migraine. That just seems like wishful thinking. If it happens, I would be forever grateful... but I know that it's a long shot.

I find myself trying to balance optimistic and realistic outlooks regarding my health and recovery. I hate the pain, the racing thoughts through my head, the assumptions and expectations of those around me, and the uncertainty of what is to come.

Recovery has been more difficult than I anticipated. I've had a few migraines, even with the device in/on. It scares me to be experiencing those all-too-familiar migraine symptoms that I can definitely tell are not surgical pain. Others just try to tell me:  "the surgery wasn't that long ago" and "the migraines will go away once I heal from the surgery." I just want to scream at them sometimes! Just because I had this implanted, doesn't mean that I'm never going to have a migraine again. Going from daily migraines to never having a migraine is extremely unlikely, to say the least. Then, I get to hear that I just don't have the right attitude or enough faith. I just can't handle it right now! I don't even know...

This post has taken me several days (perhaps a week ... time has kinda gotten away from me) to write. It's been an up and down battle with pain and dealing with the expectations that I have for myself... and that others have for me. For the first time that I can remember, the expectations that others seem to have for my recovery weigh on me more than my own expectations. I've always been much harder on myself than others are on me, so this is a strange feeling. I feel, again, like people just aren't listening! They cherry-pick what they want to hear or believe and ignore all else. They seem to have decided in their heads what this treatment is going to result in, and that is the only thing they will believe... regardless of whether or not it turns out to be true or false. I hate that it doesn't matter what I say to so many people... they're going to believe whatever they feel like believing. It's so frustrating, right now!


  1. I do hope your surgeon or the stimulator people talked with you about how these thing heal and work long term.

    I was told it takes a couple of months to "scar" in the paddles or leads. They conduct just a little better then.

    I was told that for me (with a constant headache) I would have to have mine on 24/7 and I would not start to have consitently good results until the third month.

    I saw real and significant reduction of pain at the 6 month level.

    Don't get discouraged by people who don't understand. If you had gotten a knee replacement I suppose they would want you to run a marathon the next week??

  2. They talked to me some about it, and I'm trying to remember to think of it long-term. It's just hard, sometimes. I, too, was told that I'd need to have mine on 24/7. I might call the doctor's office next week. They said the incisions are all healing very well, but the recovery time just varies so greatly between patients (from weeks to months). Thanks for sharing a little of your timeline, Winny... it's helpful to hear another's experience. Do you just have the Occipital Nerve Stimulator (2-leads)? Thanks for the encouragement.

  3. Oh Jamie, that sounds so hard. I've been praying for you - for the Spirit's guidance through the healing process. I'll add a few prayers for the people around you because they need to be as patient as you do right now, and that's really difficult.

    When I had my occipital nerve block in July, I was SO frustrated when friends and family would say things like "Oh good, now you won't have pain anymore." Uh, no. I won't have pain for maybe six months, if I'm lucky, less if I'm like most patients.

    They just didn't understand that one injection in my occipital nerve was not going to rid me of pain for the rest of my life. I wanted to enjoy every day I had without severe pain, but instead I ended up explaining the procedure to half the people I spoke with. ARGH!!

    I totally understand that frustration, and I hope it gets easier for you. Really soon.

  4. Chronic pain is so complicated and so very difficult. I had my occipitial nerve decompressed about a year a half ago. I remember the surgeon telling me that recovery was 2 weeks and certainly those first two weeks were the ugliest but it was several months before I felt like I was through the recovery process. It was during that time that I learned the surgeon spoke about 2 weeks because that was how long it took the incision. But the body needed so much longer to heal.

    I'm sorry you are facing all these struggles with expectations. I will pray for you and those around you.

  5. Hi Jamie,

    I have been thinking a lot about you. It was so wonderful to meet you and your husband in person while we were all in Texas. You are such a sweetie! I am so sorry that you have to deal with struggles of others. People truly do not understand migraine disease and everything we have to go through to just have freeddom from the pain that we suffer everyday. Hey, I am always here for you if you feel like chatting on the phone. Also, remember that you are in my thoughts and prayers.


  6. Jamie, thank yo for the update. Been praying for you dear one. (((((Jamie))))

  7. I haven't ready your blog for awhile...I didn't realize you'd gotten a stimulator. How exciting! Guess I'd better learn to keep up with these things :)

    When I got my stimulator, I know it took me months of trial and error with the settings to figure out what exactly worked for my pain. It can be really frustrating, I won't lie. And this winter I've gone through a weird period where my normal settings aren't working for me. They're almost making the pain worse. I've had to re-tweak and re-learn what works on my pain. I have a feeling this will be an ongoing process as long as I have this thing.

    And I hear ya about other people expecting you to be "cured." Any time I have a headache anymore people always say "what? The stimulator isn't working anymore?" It's just not that black and white.

    Hang in there. The relief you'll get will be worth it in the end.


Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.