Treatment History Prior to Migraine Surgery
Here is a summary of my 10+ year search for migraine relief.
On December 2, 2017 I had migraine surgery with Dr. Ziv Peled. This procedure almost completely eliminated my chronic migraines. Below is a summary of the traditional headache treatments I attempted with little success before discovering migraine surgery.
High school (2005-2008)
Beginning in 2005 (after completing childhood orthodontics and playing 1 year of high school football) I began having headache episodes about once per month. The pain was not 10/10 like it is now and there was some nausea but no vomiting.
Mother massaging neck and shoulders always brought temporary relief, although back then it never occurred to me that maybe the neck itself was the cause of the headaches.
My first 10/10 headache episode with vomiting was the day following the first night I got drunk. Perhaps this was more of a “hangover,” but the symptoms matched my current episodes almost exactly.
Indeed, anytime I drank alcohol even in small amounts I had severe headache episodes. I became known amongst my friends as having terrible hangovers. Neck and shoulder rubs always helped.
College and 2011 Injury
Throughout college I spent 6-10 hours/day sitting in front of books and laptop. Never paid attention to posture.
In 2009-2010 the headaches worsened to 2-3 times per month, and for the first time I began experiencing debilitating headaches with 7-8/10 pain without drinking alcohol.
It was during this time that I was first prescribed triptans, and I remember them being effective, especially if taken early in the development of the headache and I rested until the medicine kicked in.
In mid-July 2011, was playing with friends on beach and threw a football about 30 yards without warming up. Upon throwing, a severe, sharp pain shot up along my right side in the occipital area.
Immediately realized I had injured myself and felt a gargantuan headache developing. By 11pm that night the pain was so severe that my mother drove me to the emergency room.
Was tested for meningitis (negative). MRI at Mass General Hospital revealed mild Chiari 1 malformation and a small growth on the outside of the skull on the left temple (5mm x 10mm) but nothing else.
Throughout remainder of July and August I was bedridden with severe headache episodes. Could not sit up without triggering headaches. Considered taking semester off from college.
In August, neurologist Dr. Jonathan Ross at New England Neurological Associates diagnosed me with a strained muscle on the right side of my neck. Ended up going back to school and symptoms somehow miraculously toned down enough for me to function as student.
After graduating college in 2012, had permanent orthodontic retainers removed and experienced a significant change in occlusion.
Also, began doing physical labor working in trades. Also, spent 16 months between 2013-2016 living at Buddhist monasteries in California and Virginia meditating 4-10 hours/day sitting on floor without cushion in lotus posture.
Also in 2012 started intensively developing posture according to Esther Gokhale’s book 8 Steps to a Pain Free Back in order to cope with trades work and long hours of meditation.
Experienced high volumes of psychological stress post-college due to a myriad of new and challenging experiences. In 2013, in the midst of all this, headache episodes increased in frequency to once per week, 10/10 pain with nausea and vomiting.
During high stress periods, they were as frequent as 2-3 times per week. Occipital neck pain became almost daily. Started obsessing over diet, sleep, stress, posture in an effort to reduce headaches.
Throughout all of this, triptans were inconsistently helpful and I began to become weary of rebound headache effect. It seemed that if I took triptans more than twice per week, that the neck pain would become a 24/7 phenomenon.
Resolved that it was best to have a few solidly good days per week and suffer through the bad episodes than to have proto-headache constantly.
2014 was very similar to 2013: severe episodes once per week on average with fairly constant irritation of the neck.
In 2015 things became significantly worse.
Spent 8 months living with Aunt dying of lung cancer and started having episodes every other day. Food intake reduced drastically because fasting was my only way to cope with nausea and pain.
In December 2015 parents forced me to see a doctor for the first time since 2011. Diagnosed with depression and offered anti-depressants. Did not fill prescription.
In January 2016 moved back to Buddhist monastery and managed headache episodes with meditation and clean living until July 2016 when I started having daily headache episodes with nausea.
Summer 2016 - Present
Orthodontist Kent Lauson and MGH Walk-In Clinic
August 2016, moved to Cambridge, MA, acquired health insurance, and started to seek help from medical professionals to figure out what was wrong.
In July 2016, paid out of pocket for orthodontic treatment with Dr. Kent Lauson in Aurora, CO because I thought headaches were cervicogenic, with the root cause being my facial structure and occlusion.
That orthodontic treatment was ultimately aborted in July 2017 because acrylic palatal expansion devices were causing severe gum loss.
Have since started new round of orthodontic treatment with Dr. Leonard Kundel, using a different, more modern appliance to generate maxillary growth in order to solve postural issues that may or may not be causing neck strain.
In December 2016 went to walk-in clinic at MGH and met with Dr. Smoulders-Meyer. Was given GI test due to symptoms of nausea. Negative. Blood tests: negative. No substantive diagnosis offered.
Migraine Specialist Dr. David Chen
Sought out headache specialist and waited 5 months for appointment with neurologist and migraine specialist Dr. David Chen at MGH. Met him in May 2017.
Was diagnosed with chronic migraines and told they were genetic and that all I could do was manage them with triptans and other meds. Prescribed Zomig nasal spray (not pills, because of nausea), amitriptyline and Migra-Eeze (contains magnesium).
Did not fill the amitriptyline because I had conviction that there was an underlying structural cause to the headaches and feared side effects of drug, especially on my ability to do my job, which is auto mechanics.
Had MRI on June 22 and was told by Dr. Chen that I did not have Chiari 1 malformation and that growth in left temple had grown to 10mm x 15mm and that I should have it excised.
Appointment made with general surgeon Dr. Nicole Phillips at MGH to remove growth. Migra-Eeze had no effect.
Tufts Craniofacial Pain Center
In June 2017 after waiting 2 months, I went to Tufts Craniofacial Pain Center and met with neurologist Dr. Egilius Spierings, Dr. George Maloney DMD, and psychiatrist Dr. Kulich.
Diagnosed again with chronic migraines and told that I should stop refusing triptans because my fear of rebound headaches was invalid. Took 6 doses of Zomig nasal spray during June 2017 with some efficacy.
By July 2017 had neck pain and headaches every other day and went cold turkey on triptans.
Tongue-Tie Release, PT, Osteopathy, Myofunctional Therapy, Sleep Study, Acupressure,
In early June 2017 had tongue tie release surgery with Dr. Leonard Kundel. Resulted in no reduction in headache frequency but did result in greater tongue mobility, which is helpful because doing tongue exercises brings soothing sensation to neck pain.
In autumn 2016 saw physical therapist Jonathan Raymond who did dry-needling on my occipital region once per week. Some temporary but no permanent relief achieved.
Saw Dr. T.J. Macari D.O. 4 times in May-June 2017. Some temporary but no permanent relief from osteopathic manipulation.
Saw Dr. William Foley D.O. 5 times from June-September 2017. Some temporary but no permanent relief from herbal medicines, magnesium foot soaks, creams, kinesiology tape and osteopathic manipulation.
Had 7 Skype sessions with orofacial myofunctional therapist Kathy Winslow and found therapy to be worthwhile for headache management.
Saw sleep medicine specialist Dr. Clifford Risk and underwent sleep study in July 2016.
Diagnosed with mild case of obstructive sleep apnea and referred to Dr. Amparo David DMD who recommended sleep appliance and/or maxillary expansion to address sleep apnea and headaches.
Have since pursued palatal expansion device with Dr. Leonard Kundel.
Saw acupressure therapist 3 times in San Diego, CA in June 2016 and twice in Methuen, MA in October 2017. Temporary but no permanent relief.
General Surgeon Dr. Nicole Phillips Suggests Migraine Surgery
Saw general surgeon Dr. Nicole Phillips on September 7, 2017 for consultation about removal of growth in left temple area. After physical exam, told me that I would need anesthesia to have it removed.
Had studied my case before I arrived and asked me about my headaches, specifically where the pain came from. I told her about how they all came from the same spots on either side of my neck. She asked me if I had ever heard of migraine surgery.
No, I hadn’t.
She suggested I make an appointment with Dr. W.G. Austen, just a few doors down, who was an expert in migraine surgery.
Dr. W.G. Austen
Met with Dr. Austen on September 28, 2017. After studying my case and performing physical, diagnosed me with occipital neuralgia.
I arrived with typical neck pain, albeit mild. Was given novocaine+steroid injection on both sides of neck after instructing him exactly where I was having pain. Experienced complete numbness of all neck pain for the rest of the day, despite doing intense physical labor which normally triggers pain and headaches. Had unusual and exceptionally severe symptoms until my follow up with Dr. Austen.
1 month later at my follow up, Dr. Austen gave green light for migraine surgery. He wanted to decompress GON and excise LON.
Decided to hold off on decompression of eye and temporal nerves even though I have some pain there. Said I could always go back and do those later.
After my own research into LON excision I decided that I did not want to have that nerve removed. Asked Dr. Austen if he would decompress LON instead of excise. Told me he would not, and referred me to Dr. Ziv Peled instead. Scheduled for Skype consult with Dr. Peled on 11/2/2017.
Dr. Ziv Peled
After reading my medical history and interviewing me on Skype, Dr. Peled agrees that I am a likely candidate for migraine surgery.
But before operating, he must perform his own nerve block exam to be certain that it is nerves causing my headache pain, and which specific nerves are causing the pain.
Arrived at Dr. Peled's San Francisco office on 11/30/2017 with a self-induced 10/10 headache on the right side. Using lidocaine-based nerve blocks, Dr. Peled brings my headache to a 0/10 within 1 hour. The idea is that if numbing the nerve and taking it offline eliminates the pain, then the pain must be coming from that nerve.
On 12/2 I have migraine surgery on the greater, lesser and third occipital nerves on both sides. Dr. Peled discovers all nerves to be severely compressed, and the lesser occipital nerve (LON) to be anatomically abnormal.
Normally the lesser occipital nerve has only one branch and runs under the sternocleidomastoid muscle. My right LON had 3 branches and my left LON had 4 branches, and they were both running above the sternocleidomastoids, between the muscle and skin.
He decompresses and saves the greater occipital nerves. The lesser and third occipital nerves are severed and buried in muscle. They were beyond repair.
I experience a drastic reduction in headache frequency and severity immediately following the surgery.