Article: Nerve Decompression Migraine Surgery

Hello All,
Well I'm 4.5 months (18 weeks) post-op and things continue to be "weird".  I'm starting to wake up with a level 1 or 2 headache (I'm not calling it a migraine just yet).  The pain is very localized on the top of my head, right at the crown and throughout the day, will migrate to my forehead and behind my eyes.  It's a tingling, stinging kind of pain and very annoying.  Something my doc calls "hot nerves".  By around 1-2 pm in the afternoon, the pressure migraine starts along with the tingling head.  I get the pressure buildup in my forehead and I feel very "foggy".  It's still not as bad as the migraine headaches I'd get before the surgery.  I haven't had any type of aura which is something I'm very thankful for.  I'm trying to treat with OTC meds first.  Yesterday with Aleve (Naproxsm), which didn't do anything.  Today I just took Excedrin for Migraine and we'll see if that thwarts things a bit.  My migraine monsters all show up when it get windy outside and today, we're supposed to have some good winds pick up.  I'm also taking a Claritan and Afrin nasal spray for allergies.  Maybe that's the trigger.  We'll see how things go today with the OTC drugs.  If these don't work, then I'll go back to triptans and pain meds.  I really hope I don't have to resort to these.  I'm still of the thinking I want to give things 9 months to a year before heading back to second surgery.  My doc said I can always try Botox again too so that's an option.

With regards to the deviated septum and possible septoplasty, thank you all for your insight.  I'm not convinced that I really have a deviated septum to the extent that it's the culprit.  In 2011 I saw a very good ENT (Garth Brooks' doc here in Las Vegas).  She did a whole sinus workup (complete with sinus cavity X-rays and a scoping) and said my septum and sinus cavity were fine.  I think I'll go with her opinion first.

I'm also having increased issues with my stomach.  Daily nausea with vomiting twice to 3 times a week.  Last year I was diagnosed with gastroparesis and GERD.  I don't know if this was caused by the migraines or not.  I'm going to see a new gastro next week and hopefully she can treat me.  I have a prescription for Reglan, but GP won't renew it because of the risk of tardive dyskenisia (tremors).  Hmmm...I think you have to take a lot of the stuff in order for that to happen.  My script says to take 4 times a day, but I'm finding that once at bedtime seems to do the trick.  I'm hoping that the new gastro can shed some light on the situation.

Anyway, I wanted to thank you all for your comments and give you an update.  For those of you with recent surgeries, please add your insight to this thread.  I would love to hear how you're doing.

Hi All,
It's been a little over a month since my last post so I thought I'd update you on what's happening.

As you all know, I had nerve decompression surgery on all my nerves at once in June (suborbitals over my eyes, temporal nerves on both temples and greater occipitals on both sides of my neck).  Recovery from surgery was a little rough during the first few weeks.  Then the surgical pain subsided a bit to a tingling/itching scalp.  I thought I was doing good.  So good in fact that I started looking for a new job.

Then in November, everything started to fall apart.  The weather started to get cooler and I started to feel the familiar ice picks in my eyes and vice grips squeezing my temples.  I went back to the surgeon and he said I had a slightly deviated septum.  I think this was a BS answer as to why my headaches were back and an excuse for more surgery.  I already saw an ENT and she did a full sinus workup.  She told me that my septum was fine.

Throughout December, the headaches, nausea and vomiting have all resurfaced.  I wake up with a 1-2 pain level headache.  Sometimes in my temples, sometimes in my eyes, sometimes both.  By the end of the day, I'm at a 6-7.  Windy, rainy, weathery days up to 8-9.  I'm so bummed out.

So I got a new neurologist (my third) and he's basically starting over.  

Crap

He's ordered an MRI, transcranial doppler ultrasound of my cervical and brain vessels, lumbar puncture/spinal tap, blood work for vasculitis.  He's also starting me on Depakote, which I'm a little afraid of.  I had such a bad experience with Topomax that I'm really scared of trying any type of preventative again.


So the question for me is still out....
I think surgery helped "a little" for "a little while".  I have to wonder though if I had just kept up with the Botox injections, if I would have had the same effect.  It's really hard to say.  All I know is that now, I'm back to square one with a new neurologist, which is disappointing.

Merry Christmas everyone
Hope your holidays are pain free (or at least pain minimal    ).

So sorry that you feel you are back at square one, after all you went through with the surgery. It so sad the surgeon was of no help. I wonder if these guys hate to admit defeat? I hope you can find a helpful treatment. I too am scared to try any more preventatives as I've had so many bad reactions (especially anti seizure meds), although luckily nothing life threatening.

Another route besides the neuro could be a pain management specialist. A good one will have many options, and may think more out of the box. For example, I got to try other types of nerve blocks instead of just occipital and got a referral to a sleep specialist. A lot of the medications they would use would overlap with a neuro's headache treatment.

I've ended up on daily opiates, as they are the only thing that has helped. Lots of issues with that option, but a pain management doctor would probably be the only type to give you that option. Some pain doctors only do one type of treatment, such as only injections/interventional procedures, or only meds; you want one who will have a variety of treatment options and work with you to choose what is the best for you.

Best case you get a referral from another doctor you trust, but you may just have to make initial appointments and see what their treatment plan would be for you. I saw several before finding a good fit. Best wishes.

Thank you very much for updating us on your experience with nerve decompression surgery. We need this info on the web because the doctors who perform these surgeries all claim very high success rates but it's unsubstantiated.

Frankly I'm kind of shocked you went through surgery and you had not tried Depakote. I'm very hopeful for you; Depakote is one of the true heavy-hitters for migraine prevention. It is a first-line preventative, scoring as well in clinical trials as any other medication available. It is one of those migraine drugs about which people say, "Depakote gave me my life back." Of course it does not work for everyone. You may get partial or no relief. Also the side-effects can be difficult, but they do not hit everyone, and you may adjust with time.

Good luck.

-Platy

Thanks Platypus,
I've been on the Depakote for 24 days now and I haven't noticed any changes in my headaches.  Still waking up at a pain level 2 and maxing out at a 7-8 in the afternoons.  The "Dopey-kote" is living up to it's name for me.  I'm very groggy, tired, unmotivated and just BLAH.  More so than usual without the Depakote.  I just want to stay in bed and sleep all day.  It's also exacerbating the stomach issues.  Lots of nausea, all day, everyday.  I'm not sold on this med but I'm willing to give it 30 days.  I already filled an entire month's prescription and I know that these things take a while to "kick-in".

Wow! That sounds very shifty indeed. Particularly since they did not send any of the requested documentation. I smell a rat. Time to talk to a lawyer. And to protect your credit rating. If they file any claim against you or turn over to a bad debt collector ( who never go away and make your life hell) you need to dispute it immediately.

Wow agreed. I hope you can get this handled. Dispute to the highest levels. Document everything you can from this point, including phone calls (who, when, what they said). Definitely a good reminder to get estimated costs in writing beforehand.

But the issue with the medical industry is that they can turn around and bill whatever they want, saying that the surgery ended up going a different way, a cost was unexpected, costs went up since the estimate, etc. There are no guarantees.

Most doctors are quite out of tune with their billing offices actually. I too have had times where they say everything with the insurance was handled, pre-approved, etc, when it was not. Best wishes.

LePoppet, I'm so very sorry for what you are going through. I'm currently going through extreme financial stress which is sending my constant migraine pain levels soaring, so I can relate all too well to what you've posted. I'm sure this ordeal is causing you great physical and emotional distress.

I am so sorry. It does sound like you were lied to by the doctor and his staff. What a horrible and greedy thing to do! These doctors prey on migraine patients who are so desperate for relief that many would take out loans just to obtain a bit of relief from our constant suffering.

I watched your video and was hoping the surgery would work for you. Now, apparently it didn't even work....if I read it correctly. Oh, my God. I guess you were sort of part of the doctor's "commercial" to sell to other desperate migrainuers. I wonder if you can demand that you be taken out of his "commercial"? How terrible that this doctor is using your face and your story to further his unscrupulous practice of preying on vulnerable migraineurs. I remember in the commercial how the doctor (or someone affiliated with him) said that the exorbitant cost of the surgery was "worth it" because at least the surgery finally brought pain relief to a desperate migraine sufferer!

At least we live in the age of the Internet, where people can share their stories. If this doctor is a scammer, hopefully word will get out.

To bill you "past due" without sending you any notice---so unethical. And to rescind the promised offer of being able to make payments---again, so unethical. If you can afford it, perhaps you can get a lawyer to argue your case.

It truly sickens me that there are people out there who are so unethical and greedy. To prey on the ill is particularly reprehensible. I hope for your sake that this all works out somehow. I'll hope for the best for you.

Brenda

I totally understand your desperation for pain relief, so don't beat yourself up too much. I might have tried it if I'd had the money. When I watched the video, I was a bit skeptical when the doctor proclaimed that he could "make the nerves look happy". 'Happy' nerves? On what science is that based?

But I easily could have fallen for it myself. We get so desperate for pain relief and the chance to lead a normal life. We just want to be healthy and have our old lives back.

Yes, anyone who uses the words "migraine" and "cure" in the same sentence is suspect, indeed. If he was promising patients that he could "cure" cancer, the FDA would revoke his license and 60 Minutes would do an expose on him. I wonder why these doctors who promise "cures" for migraine are allowed to continue with their suspect "treatments"? I suppose since science knows neither the cause nor the cure for migraine, it may get murky. But cancer and other diseases are can be pretty darn murky, too. I know that firsthand.

Thanks for sharing your story, and I do hope that you can get a satisfactory resolution to this. Charging insurance companies over half a million dollars to slice open peoples' heads and proclaim a "cure" for migraine? What an egomaniac and a fraud. So sad.

Brenda

Document, document, document! So important when dealing with any kind of lawsuit. Best done as the situation goes along but still very useful even if done after the fact. State basic dates and times if possible and a brief summery of what took place or what was said at each time. This is very effective in a court of law.

I'm so sorry to hear about everything happening now.


On the billing BS...I had a doctor's office pull something similar recently. DH needed a colonoscopy this summer, and we knew we'd be getting a bill, but it kept not coming...the bill shows up the week of Christmas, and three days later we get a letter saying it needs paid in full ASAP or.... Thankfully we were expecting the bill eventually, because a $200 bill the week after Christmas isn't easily do-able by everybody.

Dear All,
Thank you for your kind words and support.  The husband and I settled for an additional $4694 which we paid out of pocket to the "doc-hole" in order to avoid collections.  Total cost for this debacle is $8,000.  I'm one of the lucky ones in the fact that hubby makes a good living and we had saved up for this.

It's more of a principal issue.

I talked to some lawyers.  But they are not interested in an $8,000 case.  Too small.

I've also looked into filing a grievance with the state Division of Insurance Department.  But tortisegirl is right.  Docs can bill whatever they want and since the insurance company didn't lose any money, its really not considered an issue.  They won't do anything.

I can file a complaint with the state Medical Board of Examiners, but I have no faith they will do anything either.  They're known for being useless here.

Finally,
I can write a review on sites like Yelp, Vitals.com, Healthgrades.com, ratemds.com, but what's the point.  My word against his.


So,
Time to move on and look forward.  I have my follow-up appointment with the new neuro to learn the results of my tests next week.

Lepoppet

I thought I'd sign in and check up on you as it's been a busy couple of months. I'm sorry to hear that your migraine troubles are back on the rise.

As we have the same surgeon, I believe, this billing situation makes me very nervous. I'm just a college kid trying to get by with no help from my parents. My original situation was $3000. And like you, I was also told he will make them pay. I have yet to receive a bill. My surgery was in October. I'm going to call again and find out what is going on. As I talked to them in December and were told still not to worry about payment yet.

As far as the success of my surgery, with this recent weather since December and the hot and cold flashes of Texas,I have had a few migraines. Mostly I'm dealing with some pain in the surgery region on the right side of my head. I find if I take 3 ibuprofen (which is just 600 mg standard rx strength) I'm usually fine. But I have had a few bad days lately. I went to an ENT and they see the deviated septum and are suggesting surgery staying the nerve that runs from my sinuses up to the right side of my head are being irritated by the weather. But don't have the money for surgery.

3 months post op and praying this doesn't go down hill.

Lepoppet

I also wanted to say that I started having ice picks through my eyes into my head since the surgery. I've noticed this pattern with the weather. The only way to get rid of it is with a triptan med. Which is disappointing because they make me feel horrible. At first I thought it was my eyes- perhaps I need glasses. I've never had vision problems before. But like I said, I noticed the weather pattern. But I found it bizarre that my migraines found a different route.

While I do not know anything about nerve decompression surgery; I do know that, yes (at least some), nerves can regenerate. Here are the three examples that I know of:

1. My grandfather had a shrapnel injury during WWI, which earned him a Purple Heart. The shrapnel severed some of the nerves in Grandpa's arm. When his arm healed it was found that the upper end of one nerve had regenerated to the lower end of another nerve, and the upper end of the second nerve had regenerated to the lower end of the first nerve. He had to relearn how to use his arm in rehabilitation.  

2. I once had a root canal on a lower second molar. Somehow during the procedure a nerve was injured (severed?). My lip remained numb for months. Slowly, it gradually regained sensation as the nerve regenerated.

That tooth eventually failed and was extracted. Several years later the first molar next to it also was extracted. When the dentist doing that extraction, was injecting the local anesthetic, he asked me, "Do you know that your nerve has scar tissue?" Therefore I know that a nerve is able to form scar tissue.

3. In 2007 I fell and fractured my left distal radius (arm bone near the wrist). The wrong type of splint (Spica Thumb) was used. It gave me a severe pressure ulcer at the base of my thumb (knee buckling, level 9 pain, worse than any migraine I have had). The deep pressure ulcer damaged a nerve, making one side of my thumb numb. The nerve eventually regenerated, returning sensation to my thumb.

The injuries to my wrist and thumb caused me to develop Complex Regional Pain Syndrome (CRPS), for which there is no cure. The best that can be hoped for is remission. Fortunately, I was diagnosed early in the syndrome; did physical therapy exercises; and so, am currently in remission. CRPS was previously known as Reflex Sympathetic Dystrophy Syndrome (RSDS).

*****

lepoppet, I am so sorry to hear about the burning pain sensation that you described, which sounds like it could well be CRPS / RSDS. The most informative CRPS website that I have found is: http://www.rsdrx.com/  (It does take some time to learn how to get around in that site.) On one page migraine and RSDS is discussed http://www.rsdrx.com/rsdand.htm

CRPS is supposed to be very rare. I believe that it is more likely that it is under diagnosed, or misdiagnosed as other conditions.

*****

I also suffer from Cervical Spondylosis (arthritis in the neck). The pain of the Cervical Spondylosis makes migraine pain more intense, and headaches make the Cervical Spondylosis pain worse; a vicious cycle.

I had the back of my neck done and the right side of my head. I started taking magnesium citrate about 4 days ago. Seems to help with some of the pain I experience that feels like it might be from swelling on the right side of my head but I'm tired of taking ibuprofen or Aleve all the time. So it seems to alleviate that quite a bit

As for any nerve pain, in the back of my neck and up the back of my head some, burned if I laid on it after surgery for several weeks. I might compare it to what I think shingles might feel like. And when I wake up the back of my neck feels tight sometimes, I'm assuming scar tissue and such. I have some disc issues in my neck but the surgery alleviated 97% off that pain because my nerve was so compressed. But it is a bizarre tingly feeling when I touch or scratch the area.

I know how you feel about imitrex making you sick. Relpax seems to keep from making me terribly sick to my stomach like imitrex did. Have you tried it?

Have you talked to the surgeon about any of this?I would think for that Bill they should offer some advice or outlook on the sensations you are feeling. I'm almost to 4 months now and I'm getting a little nervous about my migraines coming back like yours did.

Here's the latest and greatest update.

Yesterday I went and saw my first pain management doctor.  I've always been afraid to see these docs and I didn't want to have a lot of pain killers pushed onto me.  Because of the gastroparesis, I can't even keep down the current meds I'm taking.  But this center markets themselves as a pain treatment center who caters to patients who can't tolerate drugs.  They are very orthopedic oriented and since my MRI shows degenerative disc disease in the form of disc bulging, bony, arthritic formations on my vertebrae and a reduction of my spinal canal, I thought this might be worth checking out.

The doc was cool.  We talked about the nerve decompression surgery and he said that they've seen several migraine patients in their center who've had the surgery, and then had their migraines return within several months.  He told me that recurrence of the headache is not uncommon and this surgery is by no means a permanent thing.  Being an orthopedist, he explained that there was nothing stopping the nerves from becoming recompressed or from scar tissue/fascia tissue from forming around the decompressed nerve.  Its also possible for the migraine pain to continue firing down a different pathway and since you can't decompress an entire nerve, it would just transfer the pain from one area to another.  

He then said "you can't get surgery every 2 months but hey-at least you got 2 months of relief".  

Being the geek engineer that I am, I couldn't help but do the math.  The surgery cost me $8,000 and I got 2 months of relief.  Botox cost me $700 per round and gave me 3 months relief.  So for $8000 I could have had 11 rounds of botox and 34.3 months (almost 3 years!) of relief.  I also could have also avoided the 8 weeks of surgical recovery and the mental/emotional disappointment of yet another treatment option going down the drain.

Next stop...
Epidural steroid/Marcaine injections in C1, C2, C3, and joint facets of cervical spine.  I haven't tried this yet so WTF do I have to lose?  Might as well keep trying.

Happy Thoughts to All

Hello all,
It's been a year since I had my surgery.  I have been left with neuropathic pain in my scalp which I did not have before the surgery.  It feels like thousands of needles injecting hot lava into my crown and scalp area.  The pain "flares up" in the afternoons.  There is also a lot of tingling, numbness and itching between the severe flare ups.  I treat the worst of it with a giant ice pack.

My migraines are back just as strong as ever.  I had 2 months of relief in August and September of 2013, but then the migraines came back.  I have daily head pain in my temples, behind my eyes, back of head (at skull base) and pressure headaches.  I usually get visual aura disturbances several times a week with extreme sensitivity to light.  I'm sure you all know the drill.  Dark, cold, quiet room.

In March and April I got epidural nerve blocks of all the facet joints in my cervical spine (C2 through C6).  In May, I got RF Ablation of the same joints and the 3rd occipital nerve.  I am still sore.  The ablation seems to have helped with the pain at the base of my skull and a little with my temples.  But it has done nothing for the scalp pain or migraine behind my eyes.

With regards to insurance...
After my husband and I paid the doctor, we appealed to the California State Board of Insurance to try and fight the denials by Aetna.  The board had 3 independent physicians review the medical records, case files and current published literature.  They sided with the insurance company denied payment for the procedure.  They said that the clinical trials (by Dr. Guyuron) were conducted incorrectly and there "was no clinical evidence of effectiveness".  This coupled with the fact that the American Headache Society has gone on record as stating surgery is questionable (News Release).  So we're out thousands of dollars.

Just wanted to give a 1 year update.  Hope you find it useful.

LePoppet, I'm so terribly sorry for the suffering that that doc-hole put you through! It's unimaginable to me that this unethical doc can get away with his greedy, pain-inflicting surgery, but I guess the 'system' fails so many people. Sounds like this 'doc' needed to have his medical license taken away.

I suppose this is akin to the inept plastic surgeons who sometimes 'botch' surgeries. They tell you, "You signed the papers and you took the risks". I know that surgeons make people sign documents prior to surgery/harsh medical treatments that absolve them of any wrongdoing. I think once these documents are signed, it can be nearly impossible for an injured patient to sue.

So sorry that the lawyer thought that $8,000 was too low an amount to sue for. That sounds like a lot of money to me! And it's not even the money, it's the principle of the thing. Even if it was only $8 or $80, if a medical doctor messed me up, I'd certainly hope I'd be able to sue. I guess not. It's a sad commentary on life today that this doctor is able to get away with what he does.

I guess Yelp and other review sites are your only option. I hope you and all of the other patients whom he defrauded post your experiences, so that no one else falls for his line of 'snake oil' and he never makes any more money off of desperate migraine sufferers. Thanks for posting your experience, and I hope your nerves regenerate.

I know this post is a few years old but I'm desperate to see if you've experienced any relief? I found this forum trying to research post surgery issues.

Just a little history: I’m 40 years old and had decompression/excision surgery on 8 November of last year. I’ve been suffering migraines since age 13, and EVERYTHING has been a trigger, but mostly weather (which I have no control over). I’ve tried every medicine and treatment (SNRI, SSRI, opiates, elimination diets, DHE, nerve blocks, Botox, SPG blocks, seizure meds, biofeedback, massage therapy, beta blockers, etc. etc.) under the sun and have seen at least a couple dozen neurologists, primary care doctors and ER doctors. My veins are beef jerky from all the infusions and I missed my eldest child’s college graduation because I was hospitalized after DHE gone wrong. To make matters worse, now any time they need a vein, they can only access it via painful PICC line or central line due to the brutal infusions so a quick ER jaunt isn’t even an option.

I was finally directed to a headache clinic in Dallas, that specialized in migraines, by an ER doctor whose wife suffered migraines and really felt for our plight. Unfortunately, while they opened up more options, nothing helped for the last year and I had to give up my full-time job, and, well frankly, my life. My husband had to drive me 2 hours into the city at least once a week to get injections and miss work himself because I never knew how I’d react – lucky me, the side effect queen. Living in the dark of your bedroom stinks and I hear depression is a co-morbidity, but how could you not be depressed when you live your life hiding from noise, pain and everyone you love? My husband married a well woman who within months couldn’t do anything resembling living, help support our household, or even vacation since every vacation off work since our honeymoon has included a hospital stay instead of a resort – plus who with chronic migraine would dare plan a vacation?!

Even the migraine specialist, who was a neurologist btw, finally reached the point where all we had left to try were more medicine combinations – not even new meds, just new hellish combos. I was still in pain but now also suffering a traveling sideshow of side effects from the meds that were almost as awful. I mean the icing on the cake is weight gain, hair loss, insomnia, drowsiness, muscle pain, elimination issues (feast or famine), mood swings, hot flashes, etc. etc., right?! Let me also add that during the testing phase, they discovered a cyst on the pituitary gland close to an artery and I went through a barrage of tests with a neurosurgeon to determine if this was causing my pain, added to it or was worth the risk of operating and ultimately decided it was not. Now, I just go once every year to get a PICC line for the day and new scans. Still, it was like waiting on presents Christmas morning, because you PRAY there is something wrong because that means there is the possibility of fixing it.

All this crescendoed into a do-or-die situation where I had to reassess my life and conquer these migraines or give up and be disabled – but I could no longer live with it. Finally, my neuro referred me to a plastic surgeon with whom she had interned. Even though the Botox had not worked, the nerve blocks done on only one side of my face DID work which was a ray of light after a very dark year. Things moved quickly after that and he scheduled the surgery, approved it through my insurance and set up the PICC line to get started. I don’t have to tell any of you who have been through this that we know there are risks. My risks were always a little scarier because I’m a medical bad luck story – like the WORST. If Final Destination had been based in a hospital, I would be the star. I ended up with extra bleeding and the worst case of nausea in the world, high BP, etc. Since we lived two hours away from the nearest decent hospital, he kept me an extra couple of days to get it under control.

Once I healed from the immediate pain, I felt great. I had a headache, but not a migraine… FOR 21 DAYS! I had taken 2 months off work on disability to really get over this once and for all. I had some issues with BP but took my pain meds and such for a couple weeks and then started adding normal tasks and moving about to my routine to be ready to go back to work after the Christmas holidays. I actually enjoyed the holidays with my adult children for the first time in forever because I got to PARTICIPATE! Unfortnately, also during this time, I began to wean off the last of my migraine preventatives.

FLASH FORWARD: I am miserable. I get these “brain zaps” that feel like someone is playing pincushion with my scalp a hundred times a day, and they make me visiblly flinch like I’m having mini seizures. I have had 2 migraine free days in the last 10 days. I’m so depressed because number one – the thought this was all for naught, and number two – that this was our last ditch effort and it failed. My work, my job, my kids, my parents – all these people that depend on me bought into my “miracle cure” philosophy because while I knew there is no cure, I needed hope. I’m hoping the “honeymoon” phase is over but that maybe some of this levels out over the next few months to a year. The surgeon reassured me that while most people get immediate results, some can take up to a year to see the full benefits.

I've read where people say it's a miracle and others who feel worse off. I can talk all day about this to my friends, family and coworkers but no one really understands how awful this up-down battle is. The hope is the worst part. I was told not to believe it as a cure but you cannot help it. I'm back to missing days out of every week at work but not just headaches now - weird muscle and joint pain, feeling like wasps are stinging me all the time, worsening depression daily, and itchiness that feel like the most extreme allergic reaction I've ever had. I don't know how much more I can stand.

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