A Camo Vest (Or the Joy of a Good Doctor)

While I was laying in the operating room before surgery my neurosurgeon walked in with a camouflage vest. I was well drugged and thought, "Was he just out hunting? What is in that vest? Scalpels?" It didn't really matter what he used it for; it became a sign of comfort for me. He was showing a side of his personality that made me feel like I was going to be ok.

As we know I was not only ok after the surgery, but better than ever. The camo vest became a joke because my mom thought I had imagined it (for the record I had not; it was an x-ray vest). While in the scheme of things I realize I don't know Dr. Henderson, I do feel there is a bond between patients and good surgeons.

So what does this matter? The truth is I never really trusted my last neurosurgeon. He didn't like me and treated me like I was complaining about pain when I should be thankful I wasn't dying. What he didn't understand was chronic pain was a death sentence for me- at best it was the death of any chance of a normal life and suicide at worst. Dr. Henderson was the very first neurosurgeon who understood that I wasn't having all these surgeries for nothing. He talked to me while looking me in the eyes (instead of walking out the door like the other), he listened to my fears and told me he could fix it without being conceited.

Not everyone will be as lucky as me and have a leading neuro-modulation neurosurgeon preform this surgery. While I wouldn't trade it for anything, I don't know that it is important for everyone. However, I think trusting your doctor is absolutely necessary. Liking them is even better! It's easy for me to say, right? I had a pick of doctors while others can't even get the surgery preformed. But do you really want to have multiple revisions? Recovery can be very difficult, it breaks your heart, and it hurts.

Ok, gushing about Dr. Henderson is over. I had my follow-up today (I'm almost 4 weeks post-op) and I'm doing beautifully. Scars are healed, no infections (first time ever!), and most importantly I'm out of headache pain! My surgical sites still ache, but I have 3-5 weeks left of that. I have been released to do as I like, as long as that doesn't include skydiving. I even got the ok to do yoga again (my old surgeon said no way, never again). I am looking forward to my life for the first time in a long time.

Silence

I know it's been months. The truth is nothing has changed for me and I didn't want this blog to turn into me just complaining. My Medtronics rep is absolutely impossible to get ahold of. I have been trying to touch bases with him for what seems like ages. I suppose it's not his fault, since my last rep went on maternity leave they have been swamped. I'm just tired of waiting.

Originally he gave me the name of a doctor who would be my best option for the next revision. I was excited, despite the fact he was out of my network. I thought getting insurance approval would be the most difficult part, boy was I wrong. Legally I'm entitled to a second opinion, and it turns out that Dr. Boggan was the only doctor in UC Davis to do this surgery, so I have to go out of network. I went to my general care physician and got a referral. Then I got a phone call saying this particular doctor "is not interested in my case." Hmm. Alright. But Jacob recommended him, so I thought it was a mistake. After months of trying to get an explanation, Jacob simply said we need to find another doctor. It's been such a painful process. I may have to go to San Fransisco since so many doctors in the Sacramento area know and respect Dr. Boggan. My theory is they see him as the best and they wouldn't be able to do any better. Who knows?

With all this silence from Jacob I just want to shake him and remind him this is my life. I am in so much pain. I don't even use my stimulator any more because it doesn't work. I'm tired of waiting to live again. I'm not putting my life completely on hold, but there is so little I can do. I've been living mostly with my mom because I'm crippled by headaches and I can't do even simple chores. Painkillers are the only thing that works right now but I hate them. I take them so I don't rip out my hair and so I can get out of bed.

I know things will get better. I'll either get the stimulator fixed or I'll learn to live better with the headaches. I really don't want option B though. I just can't imagine my life with chronic pain...

Wait...What?!

Wednesday I made an appointment with the Medtronics rep that was at my surgery in March (my original rep, Chanie, just had twins) to reprogram my stimulator. I have completely gone off painkillers (yay!) but I've noticed my headaches just aren't being taken care of by the stimulator. I wasn't expecting much from our meeting, just some more programs for better pain relief. Little did I know what was coming next...

Jacob, the rep, is amazing. He has given me more support and more information in the last two months than Chanie has in the last year. It hurts me to realize that perhaps Chanie just wasn't who I needed on my side during this process. Jacob started Wednesday by asking how much pain relief I'm getting, and sadly the answer is 60% at best and only 20% when my headache peaks over a 5-6. This is a dramatic reduction from when I had the stimulator implanted in May '11. Jacob was not happy to hear this information. Then he started checking my program and looked even more unhappy. He's not exactly sure what's wrong, but an electrode is hitting a nerve and stimulating the wrong area. He explained that I have 4 electrodes that run along my left eyebrow. I have spent hours with Chanie and done days of research and never knew that. Anyways, 4 electrodes just aren't enough, there should be 8. So why do I have half of what I need? My neurosurgeon is old school and that's just how he does it. Wait, what? Oh yeah, by the way neurosurgeons aren't really the ones who should be doing the nerve stimulator surgery, that's the job of pain management doctors. They seem to have more success, are more cutting edge, and their patients need less revisions. Wait...WHAT?!

My head was spinning. Why didn't Chanie tell me this stuff? I can forgive that this wasn't a conversation last June during my first revision. But the fact that this wasn't brought up when I needed another revision only a few months later is ridiculous. Now Jacob isn't saying I need another revision for sure, but if the new programs aren't working then it's a possibility. Well the programs aren't working. He wants me to give it a month, and I will, yet it's something you know pretty instantly.

What to do now? I'm back in Reno for a visit and I have a call into a Medtronics rep here to get his view. I've never met him, but I feel at this point the more opinions I get the better. Perhaps that was my original problem: I genuinely believed my neurosurgeon was the best and didn't consider other options.

I have already found a new surgeon- meet Dr. Dakota

When I first started researching Occipital Nerve Stimulators I read about a woman who ended up having 9 surgeries. I thought to myself, "Ha! Who does that? It will never happen to me!" But now I can honestly see it happening. I want a pain free life, or at least manageable pain, and I will do everything in my power to achieve that. However, these surgeries will not define me. I feel like I will give it one more go in the next year and be done. My body can't handle much more, not to mention my emotional health.