Article: Nerve Decompression Migraine Surgery

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Article: Nerve Decompression Migraine Surgery

Post  lepoppet on Tue Jul 23, 2013 8:58 am

Disclaimer
I'm not a doctor or a clinician.  Just a migraine sufferer.  I wanted to share my experience with migraine surgery. It should be up to each one of us to determine the course of our treatment.  Maybe my experience will help someone else.  

In the Begining
I'm excited.  I'm nervous. I'm intrigued. I'm curious. I'm fearful. I'm hopeful. I'm happy.
Could this finally be the light at the end of the tunnel?  Could relief be right around the corner?  Can I get my life back?

All of these questions are running around my head as my wonderful husband drives me to the surgical center for Peripheral Nerve Decompression surgery.

My migraine story started in 2011 as told in "Migraine is My Mistress".  Since then, a lot has happened.  The migraines have morphed into a daily struggle.  I wake up at a 2-3/4 pain level and end my day at a 6-7.  On windy days I crawl into my cold, dark bed and cry in between vomiting sessions at an 8-9 pain level.  Even the more powerful nausea meds don't help me hold down the triptans/narcotics.  I puke up everything while watching the side-way -lightning-bolts-of-aura flash through the toilet bowl.  It's miserable.

I went on FMLA leave from my job in October 2012.  After another trip to ER for IV pain meds and fluids, my fiancé and family finally convinced me that the company I worked for was hurting me even more with the stress induced by my job.  In January of 2013, my FLMA expired and I was terminated.  The termination and loss of my career due to disabling daily migraines was a huge blow to my emotional stability.  All the drugs I was taking only made me vomit and didn't really help with the pain.  Battling fatigue was a huge effort.  It seems like a lifetime spent in bed.  Depression was barreling down on me like a train.

I am one of the lucky ones though.  I have a prince charming who listened while I complained incessantly about my situation.  He always made me feel so much better.  I also had a great family who was there for me with kind words and a sympathetic ear.  I don't know how I could have gotten through this without my wonderful support group.  I got married in March.  

It was "the best of times and the worst of times".  

I also had great friends.  One of them called me one day.  "Did you see that news blurb about migraine surgery?". I checked it out (here). Hmmm....I was skeptical.  What is a plastic surgeon doing treating headaches?  

In my past life, I spent 15 years as a biomedical engineer in the San Francisco Bay Area.  I started out testing medical devices in a lab and moved into clinical trials management.  I was very familiar with medical research and my brain started to go into overdrive.  As my husband would say "my geek was showing".  I read as many papers as I could on Supraorbital Nerve Decopression and Occipital Nerve Decompression including the landmark study, Comprehensive Surgical Treatment of Migraine Headaches conducted by Dr. Bahman Guyuron. Dr. Guyuron's 5-year follow-up study showed promising results.  There were also a number of YouTube videos from Dr. Ziv Peled and Dr. Kayvan Khiabani that were incredibly informative. Where have these guys been hiding?

According to the research, patients who had some success with Botox were good candidates for the surgery.  I had my first round of Botox in December of 2012.  It took a month for me to notice any real changes.  I had a slight reduction in my symptoms.  I still had daily headaches, but they weren't as intense.  After about 6 weeks of some relief, the Botox wore off and I needed another round.  I had a second round of Botox in April 2013 with the same limited results.

I talked to my neurologist about the surgery.  She had never heard of it and was skeptical.  "If it's so great, how come the neurosurgeons aren't doing it?"  I thought that the neurosurgeons are probably not interested in this type of surgery.  They make a lot more money implanting neuro-stimulating devices than they would doing a non-invasive out-patient procedure.  Insurance companies aren't cooperative in reimbursing for this procedure and the medical device companies who make the neuro-stimulators have the upper hand in both lobbying and marketing dollars.  Money-politics-bureaucracy-power struggles.  The patients are just an afterthought.

But I've never been the type of patient who will sit by and let the powers-that-be dictate how to manage my disease.  The doctors and corporations can fight their own battles.  I wanted my migraines to stop.  I want to feel better, I want to get better, and I'm willing to try any viable treatments that might be available.  The procedure itself has been done for decades for cosmetic reasons (brow lifts, etc.).  The worst that could happen is that my forehead is smoother.  I wasn't scared of a little plastic surgery.

Consultation
I contacted Dr. Christopher Khorsandi at the Migraine Relief Center here in Las Vegas and the adventure began.  I went to the consultation armed with Dr. Guyuron's papers as well as other abstracts and documentation regarding the procedure.  I was also armed with Dr. Jason Hall's tips on Finding the Right Migraine Surgeon.  To my delight, Dr. Khorsandi was very familiar with Dr. Guyuron and had actually worked with him.  He was well trained in the procedure and I felt very relieved and lucky that I had found a surgeon in my home town who could treat me.  My excitement level, optimism and sense of hope started to return.  We scheduled surgery for June 28th.  Dr. Khorsandi's brother, Dr. Mark Khorsandi was going to fly in from Houston to assist in the surgery and they  asked if they could videotape my journey.  At some point, this story will be available on video.

Surgery
I arrived at the surgical center with a typical level 4 migraine.  I describe my beast as the "4-Headed Migraine Monster".  Monster #1 sticks ice picks and nails into my eyes.  Monster #2 attaches the vice grip to my temples and starts to screw it tighter.  Monster #3 stands on the back of my neck and drops bricks onto the base of my skull and Monster #4 blows into my brain cavity until the pressure builds up like a big, over-inflated balloon.  Sometimes all the monsters play together and other times only a couple show up to the party.  But the beast is always with me.  I was ready for battle.

The procedure lasted 3 hours.  I had 3 areas decompressed.  The technical terms are as follows:
• Neuroplasty of the Supra Orbital Nerve (the ones in my forehead)
• Neuroplasty of the Zygomatic Temporal Nerve (the ones in my temples)
• Neuroplasty of the Greater Occipital Nerve (the big ones in the back of my neck)

They also evaluated my supraorbital foramen to determine if there might be a narrowing or ridge in the bone hole that was pinching or constricting my nerve in some way. Everything looked good and this area did not require treatment.  

I had 4-3/4" incisions on the top of my forehead in order to treat the orbital nerves.  One-1" incision on each side of my temples to treat the zygomatic temporal nerve and a 3" incision on the back of my head to treat the occipital nerve.  The decompression of the nerves was all done through these small incisions.  The incisions on the top of my forehead and on my temples were all closed with dissolving sutures and surgical glue.  The bigger incision on the back of my head required 9 staples.  All of these incisions are hidden in my hairline and unless I tell anyone about them, they are invisible.

Post-Op
I remember waking up very confused.  

"I can't find it" I said to the nurse.
"Can't find what sweetie?", she replied.  
"I can't find my migraine. It's gone. This is so weird", I said.
The nurse went and got the doctor.

"I can't find it" I said to my doctors.
"The monster is gone. I can't find him. This is so weird".
Then I started to cry.  Three years of pain, frustration, depression, anger all came oozing out of me.  It really was weird.  I had forgotten what it felt like to wake up pain free.  It almost felt like there was something wrong me because I didn't have pain.  I had redefined my "normal" to include pain.  I was elated.

Then the anesthesia wore off.

Hubby got me home and into bed.  I drank a lot of water and threw up.  Drank more water, took nausea meds, ate 5 crackers and took pain meds.  Then sleep, sleep, sleep.  

Week One
I think doctors should tell patients that "ugly" is a side effect.  Both of my eyes swelled up and turned black.  My left eye was completely closed for about a day.  My forehead was also very swollen.  It feels like a pumpkin.  And I was very sore and tender at the incision sites.  I also had numbness above my eyebrows which extends to the top of my head.  It's the same type of numbness I'd felt with Botox, only a little more intense.  But all of this was to be expected.

And yes, I got a brutal headache. It SUCKED!!! But it felt different that the normal "ice pick, vise grip, brick block" migraine headache.  This one was more of an intense soreness all over the areas that were operated on.  I searched YouTube for an explanation and came across this great video by Dr. Fadi Nukta.  I called my doctor and he confirmed that it's not uncommon to have a surgical migraine/headache after surgery due to swelling.  My doctors said that my nerves were very impacted into my muscles and were in a "corkscrew" shape.  I imagine that it took some extra effort to release those nerve cobwebs from the muscle.  I'm sure there was a lot of poking, prodding, jostling around of tissues.  I deserved to swell up.  Still, regardless of the explanation, it was miserable.  Once again, I was nauseous and vomiting from pain.  My doctor put me on some steroids to try and reduce the swelling quicker.  

It was a week of pain meds, crackers and more sleep, sleep, sleep.  But I didn't regret a moment.  The migraine monster was gone, or at least hiding for now.


Week Two
My eyes are back to normal.  I no longer look like I got in a bar fight with a motorcycle gang.  My forehead is still numb and a bit swollen, but that's OK.  My eyebrows move and as each day passes, the soreness is getting less and less.  My incisions are starting to itch like they are healing.  My husband tells me to stop picking at the glue that is starting to peel off.  Hopefully I can get my staples out this week.  They're starting to get annoying.

This morning I woke up with a level 1 surgical headache.  I felt so good that I took my 3 puppies for a 30 minute walk.  When I got home, I had a level 4 headache and I decided to try something completely new.  I took a regular OTC pill instead of the narcotic/triptan that was my standard.  To my delight, it seemed to help and I went back down to a level 2 all day.  The little blue container was tucked away in the back of the medicine cabinet.  It even had a little dust on the lid.  It was so strange to be reaching for a generic OTC aspirin instead of a prescription drug.  I thought "this is what normal people do".

I mentioned earlier that wind is my nemesis.  This afternoon we had gusts of over 25 mph.  My migraine monster remained at bay.  I had a consistent level 2 headache all day.  But again, it's a different kind of pain than the usual migraine.  I think it's still surgical pain from swelling an not the migraine beast.  Instead of running for the bedroom with a bag of frozen peas/ice and a fistful of triptans, I actually watched TV on the couch.  I think I'm going to like this new life.

I am meticulously tracking my progress on my migraine diary.  This week is the first week that I have woken up in the morning at a level 1/2 instead of a 3/4.  I seem to be staying at a consistent 2/3/4 level throughout the day instead of morphing into a 6/7 (8/9 on windy days).  Only time will tell how well I respond to the surgery.  Hopefully, as the swelling goes down, so will the pain levels.  One day at a time.

Summary for Now
I've been thinking about the difference between a "cure" and a "treatment".  I don't think surgery is a "cure".  But I do believe it is a "treatment option".  But only after a neurologist has exhausted the current standards of care (drugs/Botox, etc.).  

I will never believe that I am "cured".  I will always have migraine disease.  However, the debilitating symptoms that are manifested by a migraine attack have, for now, been reduced without the horrendous side effects I experienced with the standard prescription medications.  

I want to stay optimistic while continuously tracking my progress as time passes.  I'm so excited to see how I'll feel a month from now.  I haven't been this happy in a while.  I can't wait to start my life again.


Advice to Others
My neurologist knew nothing about this procedure.  I printed out Dr. Guyuron's papers and took them to her.  Her response was less than encouraging.  So I took matters into my own hands and sought out a surgeon on my own.  My neurologist's treatment plan was not helping me.  The drugs she was prescribing had too many side effects and the Botox was too little, too late.

If you are considering this treatment as an option, discuss it with your neurologist first.  If they are less than encouraging, it doesn't hurt to have a consultation with one of the peripheral nerve specialists doing this surgery around the country.  It doesn't hurt to talk.  There are a ton of YouTube videos and articles on this subject.  Empower yourself by educating yourself on this disease and all the treatment options that are available to you.  


There is always hope and you are not alone.
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Re: Article: Nerve Decompression Migraine Surgery

Post  tortoisegirl on Tue Jul 23, 2013 2:57 pm

Thank you for sharing with us! So glad you have found some relief.

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Re: Article: Nerve Decompression Migraine Surgery

Post  Seaine on Tue Jul 23, 2013 5:25 pm

I'm excited to hear about weeks 3 and 4
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Re: Article: Nerve Decompression Migraine Surgery

Post  7777Trinity on Sun Jul 28, 2013 3:55 pm

I read about this procedure last December. A doctor named William G. Austen, Jr, MD in Boston, MA is doing the procedure of nerve decompression. I have been toying with the idea of heading up to Boston and having a consult with him.

I read about Dr. Bahman Guyuron too, Dr. Austen received his training from him as well. Amazing that it took a plastic surgeon to find something that helps.

I had an MRI last Thursday, if it comes back normal, I believe I am going to call Dr. Austen and make an appointment.

Thanks for your experience and sharing, please let us know how things progress!!
Trinity
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ARTICLE UPDATE: NERVE DECOMPRESSION MIGRAINE SURGERY (Week 4)

Post  lepoppet on Mon Jul 29, 2013 9:27 am

Week 4 Update
Things are status quo.  I continue to wake up with a 1-2 level headache.  It stays that way for most of the day. I still believe that this headache is surgery pain and NOT migraine.  It's a soreness that is very specific and localized to the nerve areas that were operated on.  The soreness feels like a bruise right at the location of the nerves.  It's a low, dull ache.  Nothing like the throbbing, stabbing, blinding pain of migraine.  

I still get very tired easy.  I think its because of the anesthesia.  I remember having this issue when I got my hysterectomy and when I got my gallbladder removed.  It seemed like it took 5-6 weeks for the anesthetic to wear off.  I'll wake up with good energy, and within a few hours, I'm tired again.  Laying down and napping in the afternoon helps a lot with this.

There's other good things that are happening too.  Before surgery, I used to wake up with numbness in my hands and arms.  I'd also get shooting numbness down my arms.  My little finger used to get stuck (locked?) in a bent position.  Since surgery, I've had no numbness in my hands or arms and my little finger is fine.

My stomach is also a lot better.  No more daily nausea or vomiting.  I still have a bit of acid reflux, but nothing like before.  It's like someone turned off a switch.  Prilosec helps with the acid.

I've also cut way back on the meds.  I haven't taken any triptans since before surgery and I'm off the antidepressants.  If I have something to do (groceries, errands, etc.), I'll take a tramadol.  Tramadol amps me up and gives me plenty of energy to get stuff done without making me feel loopy.  But I only take it once or twice a week when I need to get out.

I remain very excited about the future weeks ahead.  I've started swimming a few laps in our pool to try and get some strength back.  I'm also sprucing up my resume and looking at job postings.  I know it'll take a couple more months to really evaluate the effectiveness of this surgery for me.  I'm trying to be patient. I know it will take a bit longer to heal.  But the future looks bright again.  

I expect that I'll always have some pain.  I never expected a miracle here.  But the goal for me would be to have what I call "functional pain".  I don't mind a little bit of hurt.  I'm a tough ol' broad and can gut out a lot.  I just hope that the level of pain is manageable enough that I can hold down a little job, go on date with my hubby and visit with family without the fear of crying, puking or fainting.  I don't thinks that's to much to wish for. Smile 

I'll post again in a few weeks to let everyone know how the healing is going
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Post Op Week 8 of Nerve Decompression Surgery

Post  lepoppet on Wed Aug 21, 2013 3:28 pm

Well it's been almost 8 weeks and I have to say, I feel pretty good.  The soreness and numbness in my forehead and the top of my head is almost gone.  I'm waking up at a 0/1 pain level.  My scalp itches though and I get these little lightning bolts of nerve pain every once in a while.  Their little zingers of pain that shoot across very specific and localized areas.  I think the little nerves are still healing and just want to say "hi". Shocked  

The effects of the anesthetic are also wearing off.  I no longer need a nap in the afternoons and I can feel my energy levels picking up.  I walk my dogs for 30-45 minutes and then get in the pool and swim for a bit.  It's awesome.Sleep 

Last week I had some stomach issues with yucky reflux.  I think it might have been a bug of some kind and not any migraine related issues.  I started to take a probiotic and it seems to be helping.

I can't say enough about this surgery.  As each day passes, I get more and more excited about the future.  My mental health is getting better and better as  my physical health improves.  This is one of the best things I ever did for myself.  I even submitted my resume for some jobs.  The future looks bright.

I wish everyone the best on their own personal journeys through migraines.  Please let me know if I can answer any questions for you.
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Re: Article: Nerve Decompression Migraine Surgery

Post  Seaine on Thu Aug 22, 2013 3:50 pm

lepoppet wrote:Well it's been almost 8 weeks and I have to say, I feel pretty good.  The soreness and numbness in my forehead and the top of my head is almost gone.  I'm waking up at a 0/1 pain level.  My scalp itches though and I get these little lightning bolts of nerve pain every once in a while.  Their little zingers of pain that shoot across very specific and localized areas.  I think the little nerves are still healing and just want to say "hi". :shock
I have had surgery before on my feet and I experienced the same shooting nerve pains. Almost like I stuck my foot in a socket, and the muscles would spasm at the same time. It was because the surgeon had nicked the nerve, and that's what happens as the nerve is healing I guess. It happened for about 3-4 months, and I also had numbess that disappeared slowly as well. Just so you know that's a normal-ish thing, if it's the same cause as my nerve pains.

That is so awesome about your progress. You'll have to remember to let us know how you are months down the road as well.
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Re: Article: Nerve Decompression Migraine Surgery

Post  TMB on Sat Sep 21, 2013 6:38 pm

I am scheduled to have my occipital nerve decompression surgery october 17. Dr Perry is my surgeon and I am excited and very nervous. I have been dealing with migraines for 10 years. For the last 3 years I've had an average of 25 a month. I'm concerned about how tough the recovery will be. I have to go back to work 11 days after.

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Re: Article: Nerve Decompression Migraine Surgery

Post  tortoisegirl on Sun Sep 22, 2013 1:20 pm

TMB-Good luck!

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Re: Article: Nerve Decompression Migraine Surgery

Post  lepoppet on Mon Sep 23, 2013 9:11 am

My recover was rather long.  Mainly due to my sensitivity to anesthesia.  I was just sooooo tired.  I had the same problem with other minor surgeries I had so I expected it.  I'm such a wimp and I'm really sensitive to medications.  Hope your's isn't as bad.

Other than that, I was just sore.  The pain was a very dull pain.  Like a bruise.  I was told that bruising and soreness was totally normal and would last a few months.  I still have tingling in my scalp (and some itching) and it's been 11 weeks since my surgery.  The pain was very minor compared to the migraines.  Aspirin and naproxem were all I took for the soreness.  I also used a lot of ice packs on my head.  It helped bring down the swelling and made things feel better.

Take advantage of the 11 days off.  Sleep-sleep-sleep.  Lots of water.  

I wish you the best!
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Re: Article: Nerve Decompression Migraine Surgery

Post  lepoppet on Mon Sep 23, 2013 9:19 am

For anyone who's interested, I helped my doctor make a promotional video.  I'm Anna S. towards the end (time stamp 15).  The doc's actually filmed part of my surgery.

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Re: Article: Nerve Decompression Migraine Surgery

Post  TMB on Sat Sep 28, 2013 9:21 pm

I'm extremely sensitive to anesthesia and medication too so I am expecting to be pretty sick right after the surgery. I just hope it passes while I try to sleep it off the following few days. This last week has been really rough and my pain and exhaustion is really taking a toll. One of the hardest parts is dealing with work stress and trying to get my attorneys prepared to be without me for 2 weeks. I have a seminar to go to next week and one asked me to please not go but its too late to get a refund so I can't back out. She's already in panic mode and I'm only going to be gone for 3 days, so I know 2 weeks from now is going to be super insane when its right before my surgery.

Now I can't wait for my surgery! 19 days to go! Thanks for the encouragement and good news of what to expect afterwards. I watched your video and it was very helpful. Every bit of positive news I can read makes 1 more day of pain and the unknown a little more bearable. I hope your recovery keeps going well and its all uphill from here on out for you.

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Re: Article: Nerve Decompression Migraine Surgery

Post  ana24 on Sun Sep 29, 2013 10:14 pm

I have surgery with Dr Mark khorsandi on Oct 11. I'm very nervous and excited. I'm a slow healer so I'm nervous about the post op.

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Re: Article: Nerve Decompression Migraine Surgery

Post  lepoppet on Tue Oct 01, 2013 9:05 am

ana24 and TMB,
I wish you the best of luck with your surgeries.  It certainly changed my life for the better.

I'm at 12 weeks post-op.  My life has returned to the awesomeness that it was before my migraines started (3 years ago!).  I still have a "tingly numbness" at the very top of my head.  I wouldn't classify this as "pain" but more of a weird "sensation".  If it gets too annoying, then I take an aspirin (Tylenol), ibuprofen (Advil) OR naproxen (Aleve) and its fine.

I started taking a probiotic from my reflux issues.  That has also helped a lot.  I avoid alcohol, spicy food, fried foods and anything that is deemed "bad for you".  
I also started taking Vitamin D and a B-complex.  My recent blood tests showed that I was low in vitamin D (which was weird given the fact that I live in the desert and sunshine is supposed to produce Vitamin D Rolling Eyes ).  The B-complex is helpful with energy levels.  I feel really good.

I know that you will feel much better after surgery.  Just remember, it's surgery.  Recovery may take a couple of months.  There will definitely be some pain and fatigue.  Give yourself some TLC during this time and try not to get too depressed.  Be patient.  It will pass and you'll feel a lot better.

please keep us updated on your progress.  I'd love to hear how you both are doing.
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Re: Article: Nerve Decompression Migraine Surgery

Post  ana24 on Tue Oct 01, 2013 2:28 pm

Leppopet
Thank you. Do you have any post-op advice? Ice packs? I have had migraines for almost 10 years now. Most occur on the right side of my head near my temple going down towards my neck and sometimes they shot up from my neck. So we ate staying there with my surgery. They are to the point where I have them several times a week. Had one about 3 weeks ago that lasted for 11 days. that's when I said enough.

I'm in a serious relationship and live with my boyfriend. He never has headaches, so this is very difficult for him to understand even when I describe it to him the best I can. But he is still trying to be supportive.

I'm a college student and I work and fight these migraines. They have come to a point of destroying my life for the last few years. I really hope this surgery helps.

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Re: Article: Nerve Decompression Migraine Surgery

Post  lepoppet on Tue Oct 01, 2013 3:21 pm

Ana,
for post-op...sleep, sleep, sleep.  Also, keep the surgery pain meds near by.  It's surgery, its going to hurt.  I took the percocets for 3 days after surgery.  Also, lots of ice packs.  My eyes turned black so I iced them for 24 hours after.  Then I used heat to relieve the soreness.  I also kept saltine crackers and gatorade by the bed.  Didn't really feel like eating anything else for the first few days.

I had migraines everyday.  It got so bad that I was vomiting at my desk every day at work.  I finally ended up in the ER with stroke/heart attack symptoms.  It was really scary.  The stress from my job was just too much to manage with the pain of migraine.  I had to go on FLMA in October and was fired in January when my medical leave ran out.  

I think your going to have to make a decision after surgery.  I did.  I finally had to eliminate all sources of stress and focus on my health.  When you think about it, 3 months off of work and school in order to have a lifetime of health is not a big deal.  It's good you have a supportive boyfriend.  I couldn't imagine going back to work (or school!) for at least 2 months after surgery.

Like I said, TLC for yourself...kindness is the best medicine.
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Relapse Migraines 3 Months after Surgery

Post  lepoppet on Wed Oct 09, 2013 2:59 pm

Well.....Crap!!!!!
I had nerve decompression surgery on June 28th.  I was doing really good until a few days ago.  I had all 3 areas excised at once (sub-orbital forehead, both temples and greater occipitals in the back).  Up until now, my recovery was smooth.  Tingling, numbness and itching of my scalp on the top of my head.  But no migraines.

I am now 14 weeks post-op and I'm having a horrible migraine.  It's just like before surgery.  Ice picks in my eyes, light/sound sensitivity, vomiting, fatigue, dizziness and severe pressure and pain in my forehead and temples.  I'm back to ice-packs, triptans, hydrocodone and zofran.  The only thing different is that the weather here changed.  We have high winds and our first real cold spell.  It's overcast outside.  I live in Las Vegas so this weather is weird and the first sign of winter.

What happened?!?!?!  Has anyone else out there experienced this?  I was feeling really happy and excited about the future and even looking for a job.  But then I got totally derailed and slammed with this migraine.  I'm so upset right now.

My surgeon told me that there might be some migraines a few months after surgery as the nerves moved from a "recovery" phase from the swelling of surgery to a "healing" phase.

Is this to be expected?  Should I give myself more time to heal?  Would the fascia that was excised around these nerves ever regenerate?  Is there any scar tissue involved in excision that would re-compress the nerves?

I hate to think that this surgery "didn't work".

I would sure appreciate any insight from friends who've had this surgery.

Crying or Very sad Evil or Very Mad Sad pale No
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Re: Article: Nerve Decompression Migraine Surgery

Post  Platypus on Wed Oct 16, 2013 10:28 pm

Thanks for keeping us updated. It's important for patients to share information about these experimental procedures.

I think it takes a long time to evaluate the results of surgery, or any intervention for that matter. Keep a headache log and track both frequency and intensity of your headaches. Success is measured in improvement.

-Platy
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Re: Article: Nerve Decompression Migraine Surgery

Post  lepoppet on Thu Oct 17, 2013 9:00 pm

I had a follow-up visit with my surgeon today and you all gave me a good bit of relief.  My surgeon noted that I have a slight deviation in my septum.  It's not anything that was clinically significant at the time of the original surgery.  However, he did notice that I had some inflammation of the lining.  Its very possible that, with the weather change (ie barametric pressure change), that lining was even more inflamed, which may have made the deviated septum irritate my nerves.

He told me it was important to keep track of "where" my migraine started.  This one started behind my eyes.  So we're thinking some kind of sinus migraine.  We're going to keep an eye on it, continue monitoring and possible septoplasty if needed.

I'm happy this is just a bump in the road.  Minor hiccups in the recovery process are totally fine with me.
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Re: Article: Nerve Decompression Migraine Surgery

Post  Platypus on Fri Oct 18, 2013 3:34 am

As a migraineur I would be VERY cautious about septoplasty. I have a fairly bad deviated septum. My nasal breathing is impeded. I live with it. I consulted extensively with an ENT at Boston Eye and Ear, a top facility. He took paranasal x-rays. He told me, "I can fix your deviated septum, and you will breathe more easily... but it will not help your headaches. And after the surgery -- you will have headaches." And for migraineurs I have heard of long-term facial-pain post surgery. Sinuses as a cause of headache has no support among headache specialists. At least get a second opinion, if not a third.
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Re: Article: Nerve Decompression Migraine Surgery

Post  Sara79 on Fri Oct 18, 2013 4:57 am

I've had septoplasty, but it wasn't for migraines.  I'd had reoccurring sinus infections, was unable to breathe through my nose, and even four full weeks of antibiotics wouldn't touch the swelling and pain.  My ENT corrected my deviated septum, roto-rootered my sinuses (I can't remember the medical term, sorry for the graphic description), and widened the openings at the back of my sinuses that lead to the back of my throat.  The doc referred to the last part as 'opening the windows,' and since this was many years ago, I joked that she had installed Windows '98 in my head (year of surgery).


I hadn't had any migraines at that point in my life...many sinus pressure headaches, but they were very different from my migraines.  It made no difference to me in the development of my migraines, as it was at least 5 years post op before I developed them.  I won't say that the surgery didn't effect anything, but I personally feel like the two weren't connected.


If anybody has any questions, feel free to ask, I'm willing to share my personal experience.

ETA- I forgot to mention that almost everyone in an area with ragweed at this time of the year is probably inflamed. The counts are high, and the areas with lots of rain have high mold counts. If you've never tried them, the OTC allergy meds (clariten/allergra/zyrtec) can really help, and they've all got generic forms. [OTC in the US]

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septoplasty

Post  dcook60 on Wed Oct 23, 2013 2:54 pm

i have done lots of things in my 44-yr history, but not nerve decompression.  it seems too experimental, so far.  although i have been desperate enough to have 3 nose surgeries which failed to help much of anything, i am reluctant to let anyone mess around with what brain i have left (hoho; age 73 and memory could be lots better.....)

here's my take on the 2 septoplasties and one roto-rooting (aka endoscopic sinus surgery).  the septoplasties:  the first, done at age 19, helped my breathing a little.  but it turns out that way back in the dark ages of 1959, the ENT surgeon took out too much cartilage.  thus, at age 60-something i had it again; this time with cartilage carved out of the back of an ear, and sewed in the septum.  this changed the shape of my nose forever, and i hate hate hate it, but what can i do?  nothing at all.

the second surgery also helped a tiny bit with my breathing, but i am still constantly stuffed up and blowing.  the third surgery (sinus) took 4 hours, and that's a long time to be under anesthesia at almost 70 years old.  yet, i came out of it just fine, and it actually helped me NOT have sinus infections for 5 months.  subsequently, the infections returned to their previous every-two-months schedule, which has now gone on for over 20 years.

so obviously, i have had to learn to live with migraine pain daily, as well as my nose always inflamed and hurting, plus too-often antibiotics.  none of the aforementioned surgeries helped my migraines, but i was led to believe that they might.  how disappointing, right?  after 15 lifetime surgeries i will NOT have any more.  unless i have a hot gallbladder or something else.........appendix already gone, and everything else seems in good shape for my age.  praise the power that be!  dianne
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I'm back from surgery!

Post  ana24 on Thu Nov 07, 2013 9:47 am

Hey everyone, my nerve decompression surgery went well. So far no migraines in the last 3 and a half weeks! Since I had them on an almost daily basis this still feels very surreal. After the first week and a half I finally started to feel like myself again. Swelling was gone and after the staples and sutures were off/out, I felt much better. It was a very painful week but nothing worse than a migraine.

I had an extremely compressed nerve in my neck. Dr. Khorsandi said it was worse than he expected. My muscles on the right side of my head were bad as well. I felt extremely bruised on the side of my head and it hurt to open and close my jaw for the first week.

The healing process didn't really hit me until 2 days after surgery. I woke up and realized just how sore I was. But all of my pain has disappeared. I feel a very TINY amount of sensitivity, like healing/bruising/swelling sort on the side of my head and Dr. Khorsandi said that after 6 weeks I will get a massive headache and swelling apart of the healing process but he will prescribe a steroid/anti-inflammatory for a few days and after that I will be back to normal.

I feel like I have my life back again. I spent the first 2 weeks crying over every little thing that I couldn't do before. Cooking, spending time with family and friends and little things like eating chocolate! As silly as it sounds, you don't realize fully just how much these migraines take over our lives. I thought I knew but now I'm truly realizing the life I was missing out on.

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Re: Article: Nerve Decompression Migraine Surgery

Post  lepoppet on Thu Nov 07, 2013 11:01 am

Hi Ana!
Great timing!  I was just thinking about posting and asking about how you were doing.  I'm so glad to hear that your surgery went well.  What a difference from one day to the next.  I remember being so surprised when I woke up.  Almost confused that "something was missing".  I'm so happy for you.cheers cheers cheers cheers .  I'm 5 months post-op.  I still have "off" days.  But nothing like migraine days.  Things just keep getting better and better.

Congrats!
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Re: Article: Nerve Decompression Migraine Surgery

Post  ValS on Thu Nov 14, 2013 3:30 pm

Lepoppet, my surgeon, Dr. Bardia Amirlak in Dallas trained with Dr. Guyuron. I don't have those ice pick eyeball headaches but he has a special technique for decompressing nerves in that area. It's not sinus surgery. I had surgery 17 Oct 2013 on my forehead and temples. I'd suffered migraines for 30 years. He found 2 extra sets of nerves in my forehead and extensive scar tissue around the nerves. I'm at week 4 and doing well

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