Ever considered surgery for Migraine relief? A real Chronic Migraine Warrior shares an in-depth look at her personal experience with the process

How and when did you first get diagnosed with Migraine? Any specific type?

I was misdiagnosed for years but finally got my migraine diagnosis in 1996 (age 26) as episodic migraine with aura. I since advanced to a chronic in approximately 2007-08. I have been chronic ever since.

How did you learn about surgery for Migraine? Who did you consult with while considering this option?

My husband saw an advertisement on a highway billboard as he was driving home from work. We were desperate after 50+ hospitalizations in the prior 4 years. My husband is in the medical field and used his connections to research Dr. Reed and was impressed with his training. We went to an information session with low expectations but heard countless positive patient testimonials that convinced us to do the non-invasive trial for a weekend. (I say “we” because I was in so much pain I could not make decisions for myself. My husband was my advocate.)

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What treatments or preventative measures did you try before considering surgery for Migraine?

Over the years, I have tried nearly everything to get my chronic migraine under control. I have tried triptans, supplements, several prescription preventatives, hormone replacement therapy, anti-emetics, opioids, Botox, nerve blocks, and DHE infusions – both inpatient and at home.

surgery for migraine

Rachel K. underwent surgery for Migraine in 2010. She uses her neurostimulators, along with many other tools, to control her chronic migraine pain.

The most drastic measures I have taken to find pain relief include multiple surgeries for migraine control: neuro-stimulator implants, a hysterectomy, and an ovariectomy. The simulators are a great tool during prodrome and postdrome. I can keep the head pain from climbing past a 6 about 70-80% of the time. Since my hysterectomy/ovariectomy, I have not had a single hormone triggered migraine. Apart from my implanted neurostimulators, I also manage my migraines with yoga, Botox, acupuncture, anti-nausea medications, a low-carb diet, and anti-anxiety meds for the anxiety that frequently tags along.

What was the approximate cost of the procedure and device? Was any part covered by insurance?

The trial, procedure, and subsequent revision were fully covered by my insurance. Additionally, anytime the equipment has gone through an upgrade, St. Jude’s overnights new chargers and remotes at no cost.

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What was the surgery recovery like? How long before you noticed a change in symptoms??

I noticed a change in symptoms immediately from the trial, which is why I proceeded with the surgery. The trial was non-invasive. Lead lines were attached externally to the skin and I was provided a remote to control the pulses to the leads. I kept it on for four days, while going about usual activities. I saw immediate relief and was encouraged by the knowledge that I could regulate the pulsing on my own.

Recovery from the surgery was easy. I spent one night in the hospital to manage the surgical pain, and then went home to rest and take it easy. As I recall, I was able to do light exercise within 4-6 weeks.

Which nerve system does the device act upon?

Both occipital and supraorbital stimulation.

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Did you have any complications or infections as a result of the procedure?

Due to battery placement in my buttocks, (typical of the early 2010s) I did experience rubbing and subsequent injection twice from aggressive floor exercises. The batteries were placed right where I would rock up and down for crunches, leg lifts, yoga moves and Pilates positions. However, each time, the batteries were quickly removed and the recovery time was 4 weeks or less before I was back to normal activity. The new placements were above my hip bone and out of the way of friction with floor exercise.

How do you interact with the device on a daily basis?

I keep the stimulators on low 100% of the time and use the remote controls throughout the day to increase or decrease the intensity of stimulation based on head pain.

What is the maintenance of the device like?

Maintenance is simple. I charge both batteries at the same time twice a week while in bed or sitting still watching TV, on the computer or reading a book. It can take up to 2 hours for the battery with 4 leads to charge, but the 2-lead battery usually takes less than an hour.

What change in symptoms or frequency did you notice after undergoing the surgery for migraine? Do you experience multi-symptom relief along with pain relief or prevention?

I do not feel full-time relief from pain, I feel a measured decrease in head pain, or what I call twinging. The stimulators do not help nausea, but they do lessen the anxiety that comes with an advancing migraine. I find that use of the stimulators can stop a migraine in escalation mode and bring down the head pain level from a 6 to a 3. I do need to be careful with sleeping with them on high because too much stimulation can make things worse over time. So, I mostly use them during waking hours.

What reaction have you received from health care providers, the public, your current headache specialist when they learn of the device?

surgery for migraine

Rachel K. underwent surgery for Migraine in 2010. She uses her neurostimulators to control her chronic migraine pain.

Honestly, most headache and primary care providers are skeptical, just as they are when they learn I had a hysterectomy/ovariectomy. When I had teh stimulator implant surgery eight years ago, surgery for migraine was viewed as a desperate attempt for relief. These days, neurostimulators are FDA approved and more physicians are open to the idea.

The public has been very curious of my use of remotes in high-traffic areas. My kids actually used to call me the first cyborg and would brag to their friends that I am half human – half machine! In the early years, I would be asked to show off the stimulators and the beeping noise that comes along with changing the intensity of settings. Now, I mostly get strange looks from people when using them in the grocery store or at a restaurant. I have had two incidents where people on airplanes have become very nervous that I might be setting off a bomb.

What advice would you give to someone considering Migraine surgery?

Consider all non-invasive measures first, do your homework and research your surgeon. The operation is FDA approved now, but you want to go with someone who has done it for years and places the batteries in the chest, not the buttocks or back, where complications can occur.


Considering surgery for migraine? Read about the things you want to consider first.

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The post What Really Happened When I Tried Surgery for Migraine appeared first on Migraine Again.



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