Hello All,

I have been struggling with headaches (not migraines) for fifteen years. As many of you know, the treatment options are almost the same for headache patients as migraine patients. I decided to have migraine nerve decompression surgery, specifically neuroplasty of the right supraorbital, neuroplasty of the left supraorbital, neuroplasty of the right supratrochlear nerve, neuroplasty of the left supratrochlear nerve, division of the right auriculotemporal nerve, and division of the left auriculotemporal nerve, after treatments such as Botox, allergy shots from an ENT, Aimovig, high doses of Effexor and Prozac, Klonopin, Ativan, Inderal, repeated (and unfortunate) doses of prednisone, numerous triptans, numerous muscle relaxers, Topamax, metformin, boswellia extract, Fioricet, Toradol shots, Ultram/tramadol, Petadolex, Curamin, turmeric, and curcumin all failed. Dry needling from a physical therapist and massage therapy also failed.

At the end of the day, I believe the surgery was a success and therefore advantageous. It reduced the severity and magnitude of my headaches, but did not altogether eradicate them. If you are looking for this surgery to utterly rid you of headaches/migraines, this is not the surgery for you; the research (a January 2005 study found that only 35% of 89 patients reported elimination of migraine headache) and my personal experience do not support that expectation. However, after struggling with the headaches for so long, I made the gamble that it was worth the time, money, and effort to obtain some, but not conclusive relief. There is also the risk, among some other risks, that the operation can worsen headaches.

My surgeon was Dr. Adam Lowenstein, MD, a double board-certified plastic surgeon. Simply put, he knows his stuff. He has an office in Denver, CO, and an office and operating room in Santa Barbara, CA. The surgery lasted just under four hours and the pain was minimal. I only had to take the prescribed pain medicine once, and the rest of the time was controlled by Ultram and then OTC Tylenol/Advil. I was able to fly home five days after and have my dermatologist remove the sutures seven days after. The main annoyance was the swelling around the eyes and reduced eyesight, although I healed gradually day by day.

Because of the lack of double-blind placebo-controlled studies, my insurance company did not cover the surgery and deemed it experimental/investigational and therefore not medically necessary. I can also understand why neurologists and other health care providers continue to recommend against it. In spite of this, if you are seeking even partial relief, and are inclined to withstand risks and put in the money and effort, migraine headache surgery may not be a grim idea.

Thank you for sharing your story. You may want to ask your doctor about trying Botox injections if you haven’t already.

Wow I am so happy to have stumbled upon this post and finally be able to read reviews from people with similar horrible experiences to myself and know that I am not alone in this. Although I realize this might be outdated at this point, I thought I can still share my story to help warn others.

I had migraine surgery back in 2012 by the plastic surgeon in Cleveland who pioneered the procedure. He has since sued one of his patients for $1M for writing a bad review! Hence I haven’t really known how to go about this, but the more I think about how negatively this surgery changed my life, the more I want to stop others from making the same mistake.

I had the temporal and occipital nerve release, as well as nasal turbinate reduction for deviated septum. Ever since surgery, I essentially cannot breathe through the left side of my nose. There is scar tissue that has been pushed over and is now obstructing it. I never had a problem with this prior. However the absolute WORST complication I have experienced is the neck pain. It was never disclosed to me that I could have horrible neck pain for the rest of my life once he essentially severed my occipital nerve pathway. Being in healthcare myself, I asked what is the worst risk or potential complication and was assured several times I may just have numbness in my head. WOW.

During the year following the surgery, I had multiple follow-ups with the surgeon. When I explained the debilitating neck pain I was having, I was told the “swelling” was causing it and should subside after about 6months. Also that he had “never had anyone else with this complaint”. Then when the pain continued, I was offered to return for further surgery to correct the issue. At this point I was fully realizing my error in trusting this man.

Prior to surgery, I had been extremely physically active my whole life: hiking, rock climbing, skiing, weight lifting, etc. within reason around my migraines. Now if I attempt any of these activities, I end up paying for it later with horrible stiff neck pain leading to migraines for days. I am unable to carry a backpack for any length of time – my husband ends up carrying it for me after a bit. This was my favorite activity and we had been planning multi-day trips which now is impossible. Skiing always leads to migraines simply from being jostled around.

For the past 8 years, I have been trying everything: yoga, acupuncture, medical massage, chiropractor, steroids/muscle relaxers, and now trigger point injections in my neck muscle of bupivicaine/decadron. However, I have presently found a neurologist/pain doctor to explain WHY all of this is happening, since no specialist could answer this. The doctor informed me that nerve damage during this surgery is essentially inevitable, which is why it should be only used as an extreme last ditch effort, and never in someone as young/active as I was (27 y.o.) – what I was experiencing was classic “occipital neuralgia”. This means my occipital nerves were severed and now shooting impulses into my neck muscle. There is nothing that can be done to fix this, the permanent damage is done! If I had been explained this was a risk, I would absolutely not have proceeded with surgery. I am extremely devastated with my results, and the more years go by the more I would like to have a chance in warning others from this doctor and this procedure in general. The best relief I have found in order to get through work and light exercise is monthly medical massage, occasional neck injections as seen above, and I am now back on a new preventative migraine med which is a monthly injection (Emgality) and has helped significantly.

Thanks for listening. It’s amazing how difficult it is to seek out others who have undergone what I have, so it is somewhat refreshing to finally be able to have an outlet. There is a lot of protection for these doctors that goes on out there (stifling of negative reviews), but what about protecting people’s quality of life?! As a nurse, this is devastating to learn healthcare is hurting patients who are willingly trusting of their “expertise”.

In response to your post I would like to report my mother’s case.
She has undergone migraine surgery twice, the first time 2 years ago, her doctor decompressed the nerves at the back of her head, and when this prooved not enough to ease the pain, she then underwent the second surgery on her temples (last year).
About 6 months after the second operation, she began to have some sort of seizure. She cannot speak (sometimes manages to stutter), with her teeth clenched, her eyes open and responsive, she is fully conscious during the entire process, but she just cannot move or speak, and sometimes she trembles. This usually occurs at night – after she has slept for a while. She has seen doctors about this, she had MR and EEG taken, but in the end, doctors could find nothing abnormal.

After speaking to another migraine patient who underwent the same surgery from the same doctor in the same week, she learnt that the other patient, too, is having similar seizures. At this point we are almost sure that these seizures are connected with this surgery. After coming across your article online, I wanted to report this not so minor side effect.
Please kindly tell us if you have ever heard of a similar case after migraine surgery. We are really worried and just 15 minutes ago, she had another episode.
Best,
N

You may want to ask your doctor about getting Botox injections into the areas of pain in your forehead and trying capsaicin cream.

Dr. Mauskop-
I saw your blog online discussing migraine surgery side effects. I’m not sure if you are still interested in hearing about side effects from surgery but I will share mine briefly.
I had migraine surgery in September 2017. Nerve decompression in supraorbital, auriculotemporal, supratrochlear and zygomaticotemporal nerves. History of chronic migraine (virtually daily) x years (father with similar pattern of migraine and age of onset).
Severe nerve pain s/p surgery particularly in right supraorbital. Apparently I had a supraorbital fossa rather than a notch and the bone was “opened up” to give more room to the nerve. I presume a nerve injury happened in this area. It’s Dec 23, 2018 and the chronic forehead pain has persisted. It is not as severe but it has required daily Lyrica, lidocaine patches, NSAID and occasional tramadol to make the pain bearable. The entire forehead is numb in places and has hyperesthesia in other places making hat wearing difficult and uncomfortable if touched.
I knew going into the surgery that side effects were possible as I work in the medical field. However when I asked the surgeon what is the worst side effects he has seen and his reply was “some numbness”. Severe nerve pain was not openly discussed but it was in the paperwork. I agree with you that the websites and practices that perform this surgery promote only the benefits without mentioning the type of side effects that I have experienced. Granted my migraines are improved however I would take my migraines back over this severe nerve pain.
I hope this is helpful to you. Please do not use my name publicly in mentioning this case.
Thank you.

Hello to all, I have been suffering in pain from neuralgia/migraines for 4 years now since I moved back to NYC from Los Angeles . My symptoms first started with an aura attack which then lead to a migraine, they were not constant at first, but soon after I was waking up with a chronic pain above my right eyebrow in the sinus area. At first I thought it was chronic sinusitis, so I went to see ENT/Neurologist doctors ,we did a ct scan as well as a MRI, MRA, everything came back clean. Yet the pain was constant, so I started to take note of when I got flare ups in that area and when I got the migraines again in the same regional area. The Drs. had me on several different meds, and botox ,convinced the sole problem was migraines, I explained the pattern of triggers which was mostly weather related and simple remedies that gave me relief. I started to do my own research, since I wasn’t satisfied with the diagnoses. I discovered in fact what I was dealing with Supraorbital neuralgia , its one of two nerves that comes out of an open notch right underneath the eyebrow, the other nerve is Supratrochlear . The root cause I believe in my case that caused this for me was a plastic surgery procedure I had done years earlier. So once again they had me on different meds which cannot resolve a nerve problem and botox which in fact did nothing for nerve problems, So I started with S.O.B. INJECTIONS. basically lidocaine and steroid mix that numbs and temporary decompresses the nerve, at first I relief up to a week with no pain, but a week turned to days and with painful side effects after injections wore off. My migraines became less and less since I believe the root cause was a compressed nerve which when my blood vessels got swollen due to weather change , nitrates or night of drinking a migraine would come on, and within the same region of my right eyebrow forehead area. Before I started getting this neuralgia I never had migraines. I’ve decided to have the nerve decompression surgery, which I am scheduled for later this month, I pray all goes well. The whole experience has been a nightmare, but what most scares me is the AURA before a migraine, usually it lasts ten min, and then the pain sets in. My question is what causes the AURA? is it an optic nerve compression?? is it an Ocular migraine? is it the most dangerous part of the migraine? can it cause a a stroke? It’s a helpful alarm clock for migraines but again very scary…. Please Advise

My esteemed colleague,
MISON and MIGON surgery are open to debate.
But your patient Barbara is not migraine.
Barbara has a cervical disc herniation or another cervical spinal pathology.
Before deciding on the migraine surgery, we must be absolutely certain that the patient has been diagnosed correctly.
My website “istanbulheadachecenter.com”is not yet published in your language.
However, my articles on the subject may attract your interest. (by goole translate)
Kind Regards
Asst. Prof. Bilgehan Bilge
Neurosurgeon.

Thank you so very much for your comments. My husband and I have been to the surgeon multiple times about the failure of this surgery. I even wrote a detailed letter about all the different conditions that has devastated my life, FROM THIS SURGERY . ( I only touched on a few in my post with you as not to take up too much time and be too laborious to read). We actually went back last week with that letter..read with many tears, telling him how his surgery has pretty much made me an invalid. Along with the financial devastation as well. He didn’t offer anything except told me he would do surgery on my eye again. I told him I am so traumatized that I can’t possibly allow him to take a scalpel to me again. And there is so much pain there already where he took out the muscle around those nerves in my eyes, if he takes out the fat he took from my belly …then what would cushion the nerves. He never offered anything monetarily at all. Personally I don’t know how anyone could live with themselves to know what he caused with his hands and still so avidly defends this surgery. Also knowing financially what he has caused and just turn his head to that also .Its on to the next patient and the next $25,000.00. Not looking back ..at least from my perspective. I made a decision 23 years ago that I would not take prescription drugs for pain and get hooked on those. I only take excedrin migraine or 800 mg of ibuprofen for the neck and arm pain. Ive had the botox injections with no results..i’ve flown to Arizona 3 times for trammel injections in my cranial bones. I went to North Carolina 6 trips for neuro cranial restructuring with none of these helping either. My faith in the Lord Jesus is the only thing that has kept my mind. I will never give up hope because I know he is with me and at any day ..my answer can come. I thank you again for putting a big caution out there about this surgery.To be honest, I’m a big review person on everything. In searching the internet before surgery your blog was the only negative or caution I found. On Dr. Hall’s site of course it’s all positive reviews. That’s why I proceeded. That’s the only reason I’m writing on this blog. My husband is so angry. He says I owe to the other people out there to put a caution because what the Doctors put out is only the positive.

I am sorry to hear about your terrible experience. Here are a couple of suggestions that I hope will help. First of all, talk to the surgeon about the debt you owe – considering the disastrous outcome he may give you a significant break or forgive all of the remaining debt. As far as treatment, ask about getting Botox injections into the areas of pain. Even if did not help your migraines in the past, this new pain might respond. And again, ask the surgeon for a discount on Botox if your insurance will not cover it. The underlying migraines might respond to the new migraine CGRP antibody “vaccine” that is coming out next year. Four companies are developing very similar products and they all have been proven to be safe and very effective. We are just waiting for the FDA to approve them. Until then, also ask your doctor about trying clonidine, tizanidine, gabapentin, and other drugs. If it is legal in your state, ask about trying medical marijuana.

I am 67 years old. I read this blog at the end of 2016. I was scheduled for this surgery with 9 surgery sites and surgery for severe deviated septum. I so wish I had listened to the caution of Dr. Mauskop Dr. Jason Hall did my surgery. I’ve had chronic migraines for over 23 years. The migraines actually started 34 years ago but became 24 hrs. a day 23 years ago. I’ve been to two neurologist and many other Drs. with all the normal migraine treatment as well as the last 17 years trying alternative medicine with also no relief. My youngest daughter heard about this surgery. My family has saw me suffer for so long ,they left me no option but to have the injections to numb the nerves to see if I was a candidate. They paid for this which was $3,000.00. Dr. Hall does not except insurance and mine wouldn’t pay anyway. The injections brought the pain from a 9 to 7and half. Dr Hall said this is what I can expect from the surgery. I had the surgery October 2016. This is one of the worst decisions of my life. Not only do I have 9 and 10 migraines now everyday but after 9 months my entire skull is still numb. The nerve pain is indescribable. He also disfigured my eyes. I don’t even look like the same person. I have a huge knot on my left eyelid from too much fat being put in. My eye was swollen shut and the fat clumped and left this very painful and ugly knot. The base of my skull feels like I had a chainsaw took to it. Its like a crater at the base of my skull. After surgery I started having horrible muscles spams coming from base of skull going down my back and arms. Now I have tingling and numbness in my right arm and now my left one is starting to have it. Dr. Hall sent me to a pain specialist who put me to sleep to try and numb those nerves and would have went into those nerves to destroy them ,had the procedure helped. It did nothing. That Dr. sent me to a neurosurgeon to see if they can help. After mri and xrays they said they could not do anything to correct these symptoms. I am in double the pain I was in before. My husband is so very upset. He says he has watched me go from trying to function to becoming all but an invalid because of this surgery. Also the surgery cost us $24,350.00 which we had to borrow and are now making steep payments each month for a surgery that has devastated my life. I had to go on disability at 51 because of the migraines, so finances was more than a struggle. Now with this extra debt and me not able to work it has put this added strain on my husband who is almost 69 and retired and has health issues himself He has had to go back to work to try and make these payments.. I absolutely could never suggest that anyone have this surgery. This surgery was presented to us as being very light in comparison to what it was. I’ve had surgeries before and been through surgeries with many family members. This is the most intrusive surgery I have ever had or seen after 9 months and still no better.

Hi Megan,

I am so glad my story gives you hope. I understand your situation and the frustration and desperation you are feeling. Here’s my surgeon’s information:

David Branch, MD
Northeastern Migraine Surgery Center
55 Broadway Suite #1, Bangor ME 04401
(207) 947-5657
(888) 507-1855
http://northeasternmigrainesurgery.com

I also would be happy to connect with you or answer questions you may have. If you want to email me personally, perhaps Dr. Mauskop could connect us. Someone took time to tell me about this surgery, and it changed nay life, so I am glad if I can be of help to anyone else in my situation. Don’t lose hope!

~Rosie

Hi again Rosie,
I did some Googling after I posted and I think I may have found the doctor you went to. But if you are open to it, I would still like to connect just for the sake of understanding what we may have in common before I go down the surgery route.
Thanks again,
– Megan

Rosie,
I read your story and I was in tears reading it to my husband as it was if I had written it myself. I am at my wits end. I have tried everything. I am so tired of being in pain. Sick and tired of the doctor visits, the medications, the side effects, and not even having relief. Literally- word for word, your story is mine. Today I actually just had another set of facet injections in my neck with hopes of moving towards a nerve ablation but going beyond that I want to consult with your surgeon. I’m wondering is there is any way for us to connect so you can give me the name of your surgeon? I want to reach out to him. I’m desperate. Thank you for giving people like me hope. – Megan

Beth, I just saw your comment…sorry I didn’t reply sooner. I’m glad to hear the surgery gave you some relief. I’m not sure about the migraine symptoms you have. Since having the surgery and being migraine free, I have not experienced those symptoms (I do get a few headaches still and some are kind of intense, but they seem to be just triggered by my neck-I also have scoliosis-and are usually relieved by a good chiropractic adjustment). When I had migraine surgery I got all four zones (back of head, temples, nasal, and above the eyes) done at once. Partly why I wanted to get them all done at once is that they told me that when patients get just one zone done, sometimes the pain tends to “migrate” to other areas. I didn’t want that and I had headaches in so many areas that I opted to get it all over with at once, and I am so glad I did. So it doesn’t totally surprise me that you are getting migraines up front now. Did you talk to your surgeon about getting other areas operated on? If I was in your shoes I would probably look into that.

I think the extreme itching is normal. Right after I had surgery I was numb in my forehead, temples, and the occipital area. Then my feeling started coming back and I had a lot of itching and tingling. It was extremely itchy and couldn’t be relieved by scratching. I also had a “creepy crawly” feeling like bugs crawling on my head, but that was all temporary. I’d say by 6 months the feeling was mostly back (just a few small areas where it was partly numb) and the itching was a lot better…just occasional itches. Now it’s been 11 months and my sensation is pretty much normal and I rarely get itches. The best thing for me was to keep distracted and not think about the itching, and sometimes a hot shower helped. As far as I know, the itching is only temporary. Hang in there!
Take care,
Rosie

Rosie, I too have had the migraine surgery – nerve decompression of the occipital nerve. I experience the horrible migraines like you and had a very similar history. The migraine surgery has help, in that, I don’t experience the pain, but continue to experience the other symptoms…floaters, fogginess, not being able to think, etc. I also have migraine in the front hemisphere which my surgeon did explain may happen. I also experience extreme itching in the back of my head. Does this happen to you and does it ever go away or lessen?

Yes, it is great to have all of that behind me!!! Having an occasional headache that usually responds to something OTC is NOTHING compared to what I used to live with. I think migraine surgery is something where what they do really needs to depend on the patients’ individual problem. If just nasal surgery is enough, then that’s great. For me, the whole works did the trick, but that’s my story; not what everyone else has to do. I know one size does not fit all, but I am thrilled about what it did for me, and enthusiastic about what it could do for others in the situation I was in. I share my story in hopes it helps someone else.

There is no way to know for sure, but it is very likely that chronic sinusitis, TMJD, and surgery resulted in chronic refractory migraines. It is great that all of that is behind you. For other people who have contact points I would recommend having contact point surgery first. Relief of migraines can lead to elimination of associated pains in the jaw and neck.

Thanks, Dr. Mauskop…your post about nose surgery for migraines was interesting to read. I actually didn’t think it was surprising that I had nose surgery along with the nerve decompression, since my doctor considers both of types a part of the migraine surgery. {This is beside the point, but I did have sinus surgery for chronic sinusitis and a very deviated septum two years before the migraine surgery. It helped my sinusitis and breathing trouble, but not my headaches and migraines. Actually, my migraines got a lot worse after sinus surgery, but I don’t know if it was related to the work I had done in my nose, or if it would have happened anyway since I had so much stress on my body. I had also had TMJ surgery a few months before sinus surgery, and I had been dealing with chronic sinusitis, bad TMJD, and chronic headaches for awhile. Do you think that the stress of all that could have brought me to chronic intractable migraines? Migraines are in my family, but I didn’t get them that bad until I had been having a lot of other problems.} Anyhow, even though I had already had sinus surgery, the plastic surgeon who operated on me for migraine ordered a sinus CT scan before the surgery. He said I had a bit of a deviated septum, and definitely nasal contact points. He did give me the option of having just the nasal surgery done, and then seeing if that was enough, but I opted to get all of the zones done since my pain was so wide-spread. I had a lot of pain and felt like my migraines also started in my temples, above my eyes, and at the back of my head. The surgeon told me he found a nerve going through a bone above one eye, so he chiseled away the bone there. Getting my temples done really helped my jaw-related headaches and even relieved pain/tension in my jaw muscles, and getting the occipital area done helped the intense neck pain. I used to get a shooting pain on one side up my neck and back of head, which is totally gone since the surgery. I was so glad I got all four zones done. So all that to say, my surgeon does operate on four zones (including nasal), but it depends on the person and what their trigger areas seem to be. He tries to figure out for the individual person where their trigger areas are. For me, I figured I could survive getting all 4 zones done at once…he thought they all were a problem for me, and I didn’t want to get one or two done, and still have some migraines and have to go for more surgery.

Thanks for all you do, Dr. Mauskop, on behalf of migraine sufferers!

Thank you, Rosie. I am very happy that you have found a solution to your migraines. It is a little surprising that you had both the migraine surgery and the nose surgery (septoplasty and turbinectomy) at the same time. I recently had a patient who had a dramatic relief of her migraines with septoplasty alone, so it is hard to know which surgery actually helped you. Septoplasty works for people who have a contact point on their septum. Here is my post about this kind of surgery.

Here’s my migraine surgery experience…

I had chronic intractable migraine, for which I had tried many different treatments without relief. For about as long as I can remember (I’m a young adult now), I’ve been prone to frequent headaches. Even when I was really little, I would get “sick headaches”—which looking back, I realize were migraines. The migraines got more and more severe as time went on. It is difficult to accurately express in words the intensity and extreme misery of such terrible migraines. It was not unusual for me to get a migraine for days and days in a row. When I would finally get a break, I still had a headache; it just wasn’t as severe as the “full-blown” migraines. I always had pain in my head and neck. I tried Botox injections, nerve block injections, preventative medications, abortive medications (all seven of the triptans), prescription pain killers (and I think just about every OTC med)—none of which really worked except for narcotics which gave me temporary relief. Most of the medications just made me more miserable with the side effects; and I kept having allergic reactions to new medicines I would try. I had sinus surgery, TMJ surgery, and did allergy shots. I also tried other medicines such as steroids, Toradol shots, and muscle relaxers. I tried all kinds of natural supplements, various nighttime mouth appliances, and about anything else the doctors could think of. I had imaging (MRI’s and CT scans) and a variety of other testing, but no answers. I went on an array of diets (avoiding certain foods known to trigger migraines, elimination diets, and strictly avoiding foods I react to). I went to all kinds of specialists, and tried massage therapy, physical therapy, chiropractic, and osteopathic treatment without relief. Migraine affected every area of my life–it was a miserable existence. I finally was referred to a surgeon in Bangor, Maine, whom I heard what very successful at helping people with bad migraines. After consulting with him in December of 2015, he felt that he could help me. He gave me hope. I was badly in need of hope. After being told by all my other doctors that they didn’t know what else to do for me and I had tried all of the good treatments they could think of, I decided that migraine surgery was my best option. I was sick, miserable, desperate, and spending many of my days in a bedroom with light and noise blocked out as much as possible, sometimes just praying to die, while life went on without me.

The day I had migraine surgery (in May of 2016) was a huge turning point for me. I had nerve decompression above my eyes, in my temples, and at the back of my head (occipital area). I also had a septoplasty and partial turbinectomy. The surgery was wonderfully successful and the relief was almost immediate. I certainly could tell a big difference just in the first few weeks after surgery while I was still recovering. I wasn’t getting migraines anymore, and it was amazing! As I continued to recover and heal from the surgery, the relief also continued. It was almost unbelievable that I should have relief from the migraines, after being ill for so long; but the relief lasted, and it turned out to be more than “just a temporary good stretch”—and I started looking forward to a new normal. Since the recovery from the surgery, I have not had one migraine. I have been able to make plans and keep them, do work, participate in events, and, in general, do many things that I wasn’t able to do before. I almost feel like a different person! It’s so incredible to be feeling well again after being ill for so long. Also, my non-migraine headaches have been greatly helped by the surgery. They are less intense, less frequent, and respond better to over the counter medicine if I need it (but I rarely take it anymore). I have completely stopped taking prescription drugs. Now, 7+ months after the surgery, I am still noticing improvement. Nearly all of my feeling has returned, and the soreness from the surgery is much improved. All of the scars are well hidden, and the surgery did not negatively affect my looks. In fact, I’ve been told over and over that I look so much better since (I’m told) I don’t have that tense, tired, in-pain look. My neurologist was very impressed at what this did for me, and said he might be sending more patients to this surgeon (though he hadn’t heard of this surgery before I talked to him about it), since he could tell that I’m very happy and doing so much better. The surgeon said I can expect continued improvement during the first year after surgery. I never thought I’d get this much better, and I had been suffering from migraines so long that I didn’t even know it was possible to feel this well. While I know that one size does not fit all in migraine treatment, I think that nerve decompression surgery is a good option for people in the situation I was in. It was the answer we were seeking for years. It was the last resort, but I have never regretted choosing it. I sincerely hope my experience can be of help to someone else who is suffering.

Yes, please do. Many people who are considering migraine surgery could benefit from your experience.

I just came across this post…I see it is a few years old, but I am wondering if you are still looking to hear about migraine surgery experiences. I had migraine surgery (nerve decompression and nasal surgery) earlier this year and I am happy to share my experiences.

Thank you for your post, although the procedure you had involved surgery, but only to place the electrodes. The migraine surgery that was being discussed is the one where nerves are permanently cut. While the stimulating electrodes can be removed, you cannot reverse cutting of the nerves.

I saw your request for comments from patients. I had peripheral nerve surgery about a month ago. The reason I was interested in this is that I responded well to the cephaly device but the cephaly has several drawbacks.

I have bilateral supraorbital leads and a battery in my chest. First I had a trial with supraorbital leads and occipital leads with external batteries. At the beginning of the trial an occipital leads fell out. However the trial was fantastic anyway. Since I didn’t seem to need the occipital simulation the surgeon recommended going with just the supraorbital.

I am pleased with the results. The drugs I take as preventatives don’t work. My neurologist used to prescribe prednisone when the united wasn’t adequate and that helped but finally he said I had had to much prednisone so I was desperate. This procedure is reversible so the risk isn’t enormous. I have medicare and supplemental insurance and they paid for the surgery

You would have to call your insurance, but the surgeon may also have to do some paperwork. Unless already tried, I would suggest Boswellia, amitriptyline, Cymbalta, gabapentin, and vigorous physical therapy.

I would also like to know which Insurance company covers part or most of the decompression surgery. I have had a constant occipital headache for 10years. I have tried many treatments, with none working except botox. As someone else mentioned, it doesn’t work enough to let me ho back to work, or have my life back. I have seen a Dr who is willing to do the surgery, but I can’t afford it, dye to not working the last 8 years.

It is not likely that the insurance companies will pay for this surgery, but you would have to check with the surgeon.

As a occipital neuralgia patient for the past 12 years, I feel I need to also give another patients side. I have been on Botox therapy for the last two and a half years. Every three months I get my 22 trigger point injections. This came after being denied by bobs for the stimulator implant . Four nerve blocks of c5 and c6 with 4 rfa’s of the same. My nerves regenerated with a vengeance so I looked to the alternative which was botox. I met with one surgeon that wanted to try botox pre FDA approval but it’s cost to me was simply unaffordable after the first trial and close to 4000 spent getting there. Now I am totally on disability and on medicare. Spent all of my life’s savings and barely living above the poverty line as I am about ready to lose my house. I worked for 18 years as a chef in a very physical position. My copays on the Botox are 2000 a year on medicare. Plus the dr. Visits and follow up at the pain clinic. I tell you, if I could have one thing done and it paid for by medicare to give me my life back I’d do it in a heartbeat. The Botox is helpful but not life changing. It takes the edge off. It is not as successful in the winter with the barometer changes. Therefore I ho up on my pain meds causing more inactivity due to the sedative nature of the game. I have researched myself all kinds of help and the next step to live a normal life again. This surgery seems to be the next step. The issues people who had implanted Stims scare me and I am grateful I was denied. A non invasive surgery in comparison to the severing of the occipital nerve my last neurologist finally suggested seems the least if all evils. I started this journey only being diagnosed with TN. It was the Dr. That did the RFA ‘s that said it was my occipital nerves. I had seen 5 well known neurosurgeons before that weighing options of having a Mvd. But my symptoms were not all trigeminal, yet still many surgeons were willing. 60% success rate held me back from that. Thank god because it was and is the occipital nerve because the nerve blocks used to diagnose helped. In the meantime I lost three years to being treated with anti seizure meds and lyrica which is the worst drug of all if you want lost time. I was Aldo up to 200 mg of fentanyl. Today, I take minimal pain meds and have the Botox treatment. But it is clearly not affordable to a disabled person. If I could find a Dr. Near me to do this decompression of the nerve and medicare paid for it it would be the answer. But, no such luck in my area. I’d need to travel. Being a single parent makes that harder now. But believe me I’m still looking for a Dr. That is close because getting 22 bee stings every three months is a major pain. I just thought I’d chime in to show you all how this ailment has effected my financial, physical and emotional state.

I had nerve decompressiom surgery for the temporal and auriculotemporal nerves on 12/16/13. I had three relatively headache free weeks and then developed trigeminal neuralgia. My doctor believes it will resolve on it’s own and prescribed neurontin in the meantime. He has been performing these surgeries for 10+ years and denies anyone ever developig this condition prior to my case. On a side note, the surgery was covered 100% by my insurance company since my deductable and co-insurance amounts were met long prior to the surgery.

Thank you, Vicki. Please keep us updated on how you feel, perhaps every 3 to 6 months. I admit to having a closed mind to procedures that are unproven, invasive, with potentially serious side effects, and expensive. There is no evidence that people develop resistance to Botox or triptans which is not to say that it does not happen to some people. Similarly, I have no doubt that some people benefit from surgery, whether because of the placebo effect or just because as people get older headaches tend to improve.

I read this entire blog discussion and felt it was lacking the opinion of the patient. I am a 56 (almost 57) year old female who has suffered chronic migraines my entire adult life. I have tried every therapy available. Several help to a point. As I have read several headache blogs online, I find that my experiences are not terribly uncommon. As I read Dr. Hall’s information, it was clear he has a clearer understanding of patients such as myself and how insurance companies operate. It is also clear that Dr. Mauskop came into this topic close-minded. You DO build up a resistance to triptans and to Botox. The surgery so far for me has been helpful. My neurologist and surgeon work as a team and take a conservative approach. Step one was to do the occipital muscle area (neck). Since then I have had no migraines stemming from that area. I have continued to have as many migraines and just as bad but all in the front hemisphere of the head. 3 weeks ago we did the eyes. I am discovering, as this was such as sensitive area, that recovery is taking much longer. I find it difficult to determine the difference between surgical pain and headache pain from that area. On a different topic, some insurance companies DO cover this surgery. Mine were both covered 80/20.

Cost efficacy data may indicate some savings to the society, but to each patient the cost of surgery will remain a lot higher than the cost of Botox if the insurance company refuses to pay for surgery but pays for Botox.

The cost efficacy data took medication copays into account, and shows that in select patients, surgery is more cost effective for patients at 18 months than traditional medical management.

In terms of the migraine surgery debate, we’ll have to respectfully agree to disagree, and let time and further study answer the remaining questions that exist.
Thanks again for your work in the headache field.

Sorry, but I have to disagree again. Botox injections for chronic migraines is covered by insurance because it is a proven and and an FDA-approved treatment, while surgery is not covered because it is far from proven, so the cost of Botox to the patient is only that of copays, while they have to pay all of the costs of surgery, whether they finance it or pay upfront. As far as antibodies to Botox, they develop in less than 1% of patients and are not overcome by higher doses or more frequent administration of Botox. So, if antibodies develop to Botox (onabotulinumtoxinA), we try a similar product, Myobloc (rimabotulinumtoxinB) instead. I will concede that in those rare cases when Botox is very effective, but then the patient develops antibodies to Botox and Myobloc is or becomes also ineffective, then surgery may be a reasonable consideration.

Agreed.
It makes sense that if Botox works, that it can be continued. However, one must consider the costs of repeated injections of upwards of 150U of Botox every 3-4 months (assuming the pt doesn’t develop antibodies, in which case doses could be higher and much more frequent to get a similar effect). It is in this group that the efficacy of nerve decompressions in reducing or eliminating symptoms has been shown to be between 85-95%. Cost efficacy studies have a financial “break even” point at 18 months with surgical treatment, even with patients paying cash or financing surgery as is done with almost all cosmetic procedures nowadays.
I am not suggesting that surgery be offered to every migraineur – it is not an option for many of them.
However, I do think that surgery should at least be discussed as a treatment option with the select group of patients who are likely to benefit.

Many surgeons will use a positive response to Botox injections as a predictor of a positive response to surgical nerve decompression. However, if Botox is effective, it makes more sense to continue regular Botox injections because Botox is much safer and because regular Botox injections often lead to complete resolution of migraines. In two out of three women, menopause brings relief and in others migraine can disappear as unpredictably as it starts. Cost is another consideration – since the FDA approval of Botox for chronic migraines over two years ago most insurance companies will pay for this procedure, while they will not pay for surgery.

No complications from surgery are trivial; it would be heartless to think otherwise.
The thing to keep in mind is that a nerve decompression (especially an anterior decompression) is a very similar operation to a cosmetic brow lift, which was performed over 45,000 times in 2012. Complications from this operation are rare, and the rare complications exceedingly so. Postoperative scarring around nerves is a concern, but using the patient’s own fat as a living “cushion” around the newly-decompressed nerves prevents this from being a commonly encountered problem.
We can disagree as to how much data is needed before a procedure becomes widely accepted, but I do not think that offering this treatment in appropriately selected patients is irresponsible unless the procedure is touted as a “cure-all”, which it clearly isn’t, or a frank risk/benefit discussion is omitted from the surgical consultation.

Some of the potential serious complications of this or any surgery besides the risks of anesthesia, which are not trivial, include excessive scarring, infection, and worsening of pain due to nerve entrapment, neuroma formation or very rare but devastating anesthesia dolorosa. The amount of scientific evidence available at this time makes it very premature to recommend surgery to patients with refractory migraines. It would be reasonable to enroll a small number of carefully selected patients in controlled clinical trials, but having hundreds of plastic surgeons across the country promote this treatment, including at institutions such as Massachusetts General Hospital, seems to be irresponsible

Dr. Mauskop:
First off, thank you for your work and contributions to the field of headache medicine.
As a surgeon who performs these procedures, I am curious as to what serious complications you are referring to when surgery is discussed. Certainly, complications do occur, and any surgeon who states that their complication rate is zero either hasn’t been operating long enough or is lying. However, peripheral nerve decompressions for migraine headaches, when looked at objectively, carry nowhere near the risk of, for example, a peripheral arterial bypass, a cardiac surgery, or even a facelift. I would argue that the greatest risk that this surgery carries are those of anesthesia.
Dr. Guyuron and his group have published a blinded, sham surgery trial that shows the benefits of this operation.
Is more research needed to validate his findings? Absolutely.
But for the subset of patients with severe refractory migraine, the existing data indicates that nerve decompressions may offer them a chance to decrease the severity of their disease (and potentially eliminate it altogether). In my opinion, an open, honest discussion with a surgeon who specializes in this these procedures should be included with the treatment planning in this group of patients, much in the same way a plastic surgical consultation is part of the routine surgical planning for women who require mastectomies for breast cancer.
Thank you again for your dedication to helping headache patients everywhere.
Sincerely,
Jason Hall, MD, FACS

Dear Dr. Ocher,
Thank you for writing; I am happy to post your letter on my blog. I think it is possible that surgery will help some of the refractory chronic migraine patients, but we need well-designed blinded trials of real vs sham surgery to prove its efficacy. Such trials have shown that surgery, which seemed to make a lot of sense, in fact is ineffective for a variety of conditions. These include intracranial-extracranial bypass, arthroscopic knee debridement, and other. Considering the powerful placebo effect of surgery I think it is inappropriate to advocate wide use of unproven surgical techniques which always carry a risk of serious complications. It is true that I was using Botox for my chronic migraine patients for many years before we had solid scientific proof, however, Botox injections carry minimal risks, which are less than that of oral medications.

Dear Dr.Mauskop,
My name is Dr.Elena Ocher and we had few phone conversation in the past regarding our mutual patients but never had an opportunity to get personally introduced. This letter is really my chance to open the communication line with you regarding some experiences we have developed in treatment of severe headaches. I have very successful practice of anesthesia and pain management in New York, have a background of neurosurgery and many years practiced in the field. Always was very much interested in surgical treatment of different types of headaches and ,ironically,came to US for the fellowship in cranial nerve surgery.
As you know American neurosurgery pioneered in cranial nerve surgery and still is maintaining the highest standard in training and research in cranial base surgery,it is really the best in the world. That’s why patients from entire world come here to get operated,including the royals and celebrities.
It is not surprising that American surgeons continue to explore benefits of intra or extracranial nerve surgeries in most severe cases of intractable headaches,cranial neuralgia’s or atypical head and facial pain. In your blog you mentioned that reconstructive surgeons are promoting the new treatment of migraines,which sounds like something unethical or out of scope of normal medical practice in free world of business of medicine. We have to be proud of ever evolving progress of medical science and new developments in treatments of neurological diseases. Hope,you never questioned the need of spinal surgery in cases of severe nerve compression or peripheral nerve neurolysis in case of trauma or compression.
The etiology of pain syndrome in neck and head areas is related to compartment nerve entrapment as in cases of carpal tunnel or ulnar nerve compressive neuralgia. Many different types of headaches are related to muscular-fascial nerve impingement or foraminal narrowing, or concha bullosa, or septal spurs, or facial deformities,postraumatic nerve scarring or trigeminal nerve branches compromise. Procedures, we perform for this kind of pain are most successful when we are able to relief the pressure from the nerve,take down adhesions or dilate the existing anatomical tunnel.
I see great benefits from the treatment with regular blocks or Botox A therapy and agree that majority of patients could and should be treated conservatively and nobody wants to operate patients who have mild or even moderate disease. But patients with severe pain disease deserve a second chance to get evaluated for possible surgical treatment,if there is any indication for it. Truly,they deserve more compassion.
Any surgery could be complicated with infection or bleeding, its not even original to scare people with complications and side effects of procedures. So much more difficult is to give our patients the TRUE knowledge of there conditions,guide trough all options and give an expert support for possible cure.
Surgeons who perform this kind of surgeries are honorable and respected in there field, known for there great skills, expertize and integrity.Published materials are available,medical community needs to review them without prejudice.
We have great experience with our patients who underwent surgery for headaches,all of them were cured and completely taken from multiple med. I attribute these results to very careful selection of candidates and great pre and postsurgical care.
This letter is not anonymous,you can put it into your blog and I am ready for open discussion with my colleges and patients.
Dr. Mauskop, we have great respect for you and your amazing expertize in Neurology and Headaches, hope you will see the future in our efforts and support us in our study,research and clinical work.
Wish you the best,with my deepest regards

Dr.Ocher