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Just Another Lab Rat: My Experience With an Occipital Nerve Stimulator

I’ve never felt more like a guinea pig than I did when I had my occipital nerve stimulator implanted almost 10 years ago. Read about the experience, and my thoughts about it all these years later, in Migraine & “The Box” — Feeling Like a Guinea Pig With an Occipital Nerve Stimulator on Migraine.com.

The post is in response to the Migraine & Headache Awareness Month Blog Challenge question from June 12, What situation in your migraine/headache disorders treatment has made you feel most like a guinea pig or lab rat?

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Surgery for Migraine: Is it Worth the Risk?

Stories on a plastic surgery technique used to treat migraine made the rounds this month. Most articles present the surgery as a miracle cure, though Philly.com’s article Surgery for Migraines: Help or Hokum? provides a well-balanced look at the procedure. It notes that neurologists “generally remain not just skeptical of surgery, but disapproving.” In fact, the American Headache Society issued a statement urging patients be cautious in considering surgical treatments. The statement reads, in part,:

In light of recent news reports about the growing use of surgical intervention in migraine, the American Headache Society® is urging patients, healthcare professionals and migraine treatment specialists themselves, to exercise caution in recommending or seeking such therapy.

In our view, surgery for migraine is a last-resort option and is probably not appropriate for most sufferers. To date, there are no convincing or definitive data that show its long-term value. Besides replacing the use of more appropriate treatments, surgical intervention also may produce side effects that are not reversible and carry the risks associated with any surgery. It also can be extremely expensive and may not be covered by insurance. Most importantly, it may not work for you at all.

Since the occipital nerve stimulator I had implanted in 2003 proved ineffective, I swore I wouldn’t try to find a surgical solution again. (The nerve stimulator was my third migraine-related surgery, including TMJ surgery in 1997, sinus surgery in 2000.) The nerves of a migraineur are so sensitive that anything that mucks with them seems a bad idea.

That resolve lasted until earlier this spring when I found myself wishing for a hole in my heart (which I do not have). In a comment on that post, Drew shared his story of being diagnosed with a PFO and considering having it closed as a treatment for his NDPH (new daily persistent headache). Drew wrote,

“The research on this subject has led me and my doctors to one simple reasoning of thought. The proceedure is just not worth it. There is no garantee that closing the pfo will stop the headaches in the short term or long term over your life time. There is also the very possible chance that you could suffer even more complacations from the surgey, by no means is this surgey a fix it. Remenmber it still intails your heart and messing with the bodies system.”

The wisdom of Drew’s comment resonated when, days later, I saw the stories about plastic surgery for migraine. I must admit that initially my hopes were raised as I read about the surgery — I felt pretty bad and was wooed by the thought of relief. Then I remembered Drew’s comment and my own resolve and saw the AHS’s statement. No surgery for migraine has good evidence for efficacy and any surgery has potential complications and impacts the body in many ways.

I have re-resolved to avoid any surgical “fix” until it has strong support from scientific studies. The potential problems just aren’t worth the risks. What do you think of surgery for migraine? Have you had any (and was it effective)?

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Surgery for Migraine and Headache: Does it Work?

Nerve stimulation, nasal surgery/septum repair, cutting muscles in the forehead and PFO closure are the surgeries commonly mentioned as headache treatments. A lot of press coverage doesn’t necessarily equal efficacy. They are all still in early phases of clinical trials. Recent opinions I’ve come across aren’t encouraging.

I’ve had two of the four — an occipital nerve stimulator and nasal surgery — and don’t intend to try a surgical treatment again. Neither surgery was effective for me and I sometimes wonder if the nerve stimulator made my migraines worse.

Surgery is so commonplace that it is normal to consider it as a remedy for so many illnesses. No matter that general anesthesia is always risky and there’s a potential for complications — including that it may worsen the condition. Not to mention that its expensive and invasive and may not even work.

I’m not saying that because my surgeries were unsuccessful yours will be too. I do caution you to take it slowly. Research the procedure as much as you possibly can. Ask your doctor every question that you have, no matter how silly or small it may seem. This is your body. The doctor may have the expertise, but you are the only one who really knows yourself.

If you have the slightest inkling of discomfort with your doctor, find someone else. If he or she tells you in your first appointment that surgery is just the thing for you, find someone else.

Although surgery may feel like your last hope, it rarely is. Few people have truly tried everything. If multiple doctors say you’ve tried everything, it’s time to get on the internet and learn what else is out there. Online forums are a great place to start. (I’m partial to The Daily Headache’s online support group and forum, but there are lots of good ones.) Maybe you’ll discover that you have tried everything; maybe you’ll find a not-so-well-known treatment works for you.

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Making Peace With Pain: Accepting Migraine and Chronic Daily Headache in My Life

Accepting that I may have a migraine or headache every day for the rest of my life is the most effective treatment I’ve had. But how did I get here and what does acceptance mean, exactly? Time. I know, not an encouraging answer, but where I am now is worth all the time it took to get here.

After my occipital nerve stimulator proved ineffective in January 2004, I was devastated. What I thought was my last chance at treatment had failed. Feeling like you have nothing left can suck you into a dark hole. It can also be the motivation necessary to claw back to an enjoyable life even if chronic daily headache and migraine are going to stick around. Most likely, it will be both.

For more than a year, I wrapped myself in the sadness and hopelessness that enveloped me. Mourning losses from my illness was necessary, but I wanted my life back. Even one full of pain and exhaustion was preferable to where I’d sunk. I was finally motivated to find a happier way to be.

Reading The Anatomy of Hope by Dr. Jerome Groopman played a crucial role. He writes: “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

Until then hope was believing I’d find a miracle treatment. Groopman taught me that hope is knowing a happy life is possible even with illness. Finding the joy in everyday life is far better than clinging to desperate desire for a magic cure.

Instant change didn’t follow my aha! moment, but put the process in gear. Now I have days where the thought “I love my life” jumps unbidden in my mind. That never would have happened four years ago. I still have plenty of days that are horrible, but hope lurks even on days I don’t think I can handle it anymore. When I feel OK, I really do try to seize the moment, as the cliche goes. Corny yet true.

The following books have helped me along:

  • The Anatomy of Hope by Jerome Groopman – The first time I read this, it was just an interesting collection of essays; the second time I “got it” and took the messages to heart. That was when I was first beginning to accept headaches as a permanent part of my life.
  • All in My Head by Paula Kamen – A memoir and great information source on chronic daily headache. She recommends Chronic Illness and the Twelve Steps by Martha Cleveland for accepting illness. (Kamen is also a contributor to the New York Times’ migraine blog.)
  • The Chronic Illness Workbook by Patricia Fennell – The same idea as the 12 steps book, but with less of a spiritual focus and is more methodical (for lack of a better word). I prefer this one.
  • Kitchen Table Wisdom by Rachel Naomi Remen – In the self-help/inspiration genre without being over the top pushy or mushy. The thoughts it provokes have been vital to my acceptance of illness. My copy currently has 14 bookmarks in it.

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Physical Therapy: Weak Muscles, Scar Tissue & Posture

Physical therapy looks like a promising migraine/headache treatment for me. We made progress in the first two sessions and my third tomorrow. His take makes a lot of sense to me.

Weak muscles in my back are partly to blame for neck pain. Envision your back as a lollipop stem. The tasty part of the lollipop will be firmly on top if the stem is solid. If not, the candy will flop around on the stick.

When your neck isn’t sturdy on its stem, it also moves around. Muscles and tissue tighten to compensate, moving muscle, tissue and bone out of place. Strengthening little used muscles, which align the neck and hold its correct position, is part of the solution.

Built up scar tissue on the left side of my neck is another culprit. The scars have essentially fused two muscles, keeping both from working properly. Myofascial release from my physical and massage therapists will loosen the scar tissue, although it is so old that some will remain.

Interestingly, the scar tissue isn’t on the right side, where my occipital nerve stimulator wires were. The physical therapist believes it is connected to car accidents I had in high school. No injuries were treated after the accidents because I didn’t notice any. Yet, he said even the most minor accident could have contributed.

I’m working on my posture too. Instead of pushing my shoulders down, which I’ve always thought was the way to correct bad posture, I’m lifting my sternum to be upright. Looking in the mirror, my “corrected” posture looks strange, but it feels great.

My treatment path is promising. Still, I wonder if I’m just searching for a culprit. Time and time again, anything possibly connected to my migraines becomes my focus. After a particular treatment doesn’t work, I move to the next explanation with as much fervor as the last.

I’m fond of this one for now. It echoes what I’ve learned from yoga and massage therapy and repetition is reassuring. My fingers are crossed and my outlook is good.