73 responses

  1. Diana Lee
    10 July 2009

    I hope some patients who have had surgery will respond because I’m continuously looking for feedback from other patients. My doctors think my migraine are being triggered by occipital neuralgia. I’ve had most of the treatments, but not surgery or a stimulator implanted. Both seem so drastic and scary, but I’m not sure I can live like this and not try everything I possibly can.

  2. Emily
    10 July 2009

    Hopefully medication and other technology will continue to improve treatment of chronic pain conditions. While surgery or implants are not an option for everyone, for me it was last ditch effort to stay off major heavy duty pain medication, which could not actually control my highest levels of pain.

    There is a video of a gentleman name Bobby Sorrell who had a successfull stimulator implant for occipital neuralgia. It was done for and by the Texas Trigemenial Society I think.

    http://www.youtube.com/watch?v=T2TvRL8BXpk

    I have just received an implant under a headache study for a different condition (not occipital neuralgia), and while I have had pain reduction its too early to tell if I will have lasting or complete effect like Mr. Sorrell or if it is just wishful thinking on my part! The surgery was outpatient, the pain and discomfort minimal. They only used minimal “twilight” sedation. I was able to walk 4 blocks back to my hotel room after surgery.

  3. cathy
    8 August 2009

    I am having the surgery on the 18th August after over 2 1/2 years of consistent pain.
    We fought our insurance company and won. It’s a $74k surgery so Providence did NOT want to pay for it. They denied the surgery using the excuse that is was an experimental procedure. We managed to get it reversed.
    Anyway, I can write more after the surgery. The first week will be the trial.
    After waiting and praying for this now, of course, I am terrified. Terrifed it will make the pain worse.
    I can write more if anyone is interested.
    Take care.
    cm

    • Alicia
      28 July 2010

      I have been suffering from occiptal pain for nearly 4 years. I’ve done lots or esearch too and want to proceed with surgery. My HMO – Kaiser Permenante is refusing to do the treatment. Can you please advise me how you got your insurnace to agree to it. I’m desparate and need help.

    • Siggy Buckley
      1 November 2011

      Alicia,
      glad you won.
      I just had a trial which was inconclusive/ not convincing. How much can you tell after 4 days? I have a bout 15-2- migraines a month starting from occipital nerve. Now insurance wants to deny claim. Doctor was to get pre-authorization. Unclear if he did or not. I Don’t want to end up with $13,000 for trial. Any tips when dealing with them? Proven clinical studies etc?Had spinal stimulator 3 years ago for $100,000. United Healthcare paid that no problem. regards and thanks, Siggy

    • Siggy Buckley
      1 November 2011

      Sorry, I meant Cathy! Scrolled down to much here…

  4. Diana Lee
    12 August 2009

    Hi, Cathy! I’m waiting right now to see if my insurance will approve the surgery for me. I don’t feel very optimistic about it, but who knows. Maybe they will.

  5. cathy
    22 August 2009

    Hi,
    I had the surgery the trial for Occupital Neuralgia Stimulator on 8/18/09 (2 day’s ago) at Oregon Health Science University (OHSU) my surgeon was Dr. Burchiel. They did only the left side since that’s where I had a blow to my head almost 3 years ago. Since Wednesday my the back/left of my head head has been numb. I wish it would have stayed numb. I was put to sleep for the surgery although every other medical person I met told me I would be awake until the very end when I finally saw Dr. Burchiel and he said nope asleep. After I woke up the nurse offered me 2 vicodin for the surgery pain (only) she made very sure to clarify between head pain and new incision pain. I refused the vicodin due to finally being feel of them. So, when I woke up after the approx. 2 hour surgery a Medtronic rep. came in to meet me. He was in scrubs and was also apparently had been in the operating room w/me. I was asleep before I went in the OR and before they but the breathing tube down my throat so that was nice but it felt like a lot of lost. Anyway, I was confused as to why he was wearing scrubs & even why head be in the OR but didn’t ask as I was just waking. So, he went over the arrows on the Palm Pilot size device I’d be caring in my pocket for the next week. I had the long cord coming from the back of my head, an incision and small cord (the cord later to be implanted permanently) taped up behind my neck up were my hairline meets, and a pinkie sized device taped behind my left shoulder. The device on my shoudler now is waiting go, I guess, between my front left shoulder and left breast. This well occur durring next week’s surgery.
    So, the most important part is what happened when the Medtronic rep plugged me into the device that I could hold in my hand and control with 2 sets of arrows. Control what??!! Do you know? I did not know! I have had read tons, tons, talked to several doctor about this procedure and watched all the Medtronic video’s. I must have missed something.
    What the device does is it replaces the pain (the 10 on the pain scale head pain for me every day all the time) with a type of electrical current. If you turn it up too high it makes you jolt and it’s very painful. It’s a bit like needles poking you all over your head, or in my case, all over the left side. At first it felt like I was replacing one pain for another. But, like I said I just got this done and it HAS TO work. I have to work with this machine and get use to it. If anyone has feedback I would love to hear it.
    Medtronic’s told me the battery back in this stimulator lasts from 3-6 years. And cost $40,000!
    I also wondered how you would ever get this out of your body. Surgery obviously but the cost??! Maybe you never would. It cost us $74,000 to put it in. It can’t be cheap to take it out.
    I hope this helps or makes some sense to someone. I am still in a lot of pain but still hopeful that this well work and very grateful to have the opportunity to get the surgery.
    Like I say before. We were denied by our insurance co. And had it reversed but you must go thru all the denial of your insurance co. fist. fyi.
    Best wishes,
    Cathy

    • Siggy Buckley
      1 November 2011

      Cathym, I sympathize with you. I had a spinal stim for $100,000 3 years ago that never worked. I felt jolt s and stimulation in my arm pits and breast>hello! Pain was in the neck and back of the head. they offered another surgery to reposition it. I refused. The jolts , even when turned lower, were just irritating never helpful After a year it was taken out. Good luck. Have it adjusted by the Medtronics guy, different. wavelength and strength, frequency etc.

  6. Emily
    23 August 2009

    Cathy: Hope you have good results on your trial. I had my trial in May, implant on 6/30/09. The permanent implant did not seem to really “kick in” effectively for me until 7 weeks after surgery, but I did not get it for occipital neuralgia. I was told that it takes 8 weeks to heal completely, so I guess that timeline makes sense.

    The reps from the stimulator manufacturer [I was told by my surgeon] go into the surgery to program and check the stimulator to make sure it is in the right place and is working properly. They then go over the settings with you post surgery. Because I am on a clinical trial, I do not have the full set of programs on mine yet, but you should get those right away.

    Hoping the stimulator will bring you some measure of relief. Congratulations on fighting an insurance company and winning!

  7. Cindy Hieronymi
    19 September 2009

    I suffer from Occipitical Neuralgia and Cervical Dystonia and have been in Pain Management for 3 years in which I receive regular nerve blocks and botox injections along with heavy pain meds in order to function on a daily basis. I reside in Huntsville, AL and am a 51 yr. old female.
    I have had 3 consecutive spinal surgeries and am fused, grafted, plated and screwed together due to DDD and a car wreck. I am now addicted to Oxycotin and Lortab. I watch the clock religiously and count down the minutes until I can have my next dose. I have never known such pain as this but live with it day after day. I also have severe nerve pain which pulsates down my arms into my fingers and also my toes. Feels like I am having a nerve conduction study all the time. I cannot tolerate to scratch my scalp or brush my hair sometimes and the right side of my face feels like it is drawn up so tight with spasms…my jaw aches, behind my ear aches…along with the ice-pick constant sharp pains in the back of my head.
    I need a CT Guided Nerve Block desperately. It used to be the only proceedure that would take the edge off this pain, but the only Neuroradiologist in town moved and I am in serious pain.
    I cannot get an appointment with any Neuroradiologist in Nashville or Birmingham for some reason…my pain Dr. has tried for months as well as myself and I cannot get anyone to even call me back.
    Can anyone tell me how to get in touch with a Neuroradiologist? Also…
    how do I get a referral for any surgery out there for this condition?
    I have researched nerve stimulators and new experimental surgeries being done but have been told that my nerve damage is too close to the occipital artery. Does anybody out there have any suggestions? I own a business and can no longer operate it due to this condition. I sleep with an ice pack every night on the back of my head and a heating pad on my cervical muscles. I am in bed in pain more than I am up these days. I cannot imagine living like this the rest of my life.

    • Michelle Ralston
      9 December 2010

      Hi Cindy,

      I understand where you are coming from. I had a cervical surgery in October 2009 and within a month or two I developed Occipital Neuralgia. Believe me, I know pain! I went from Neurologist to Neurologist seeking answers or just some relief. NOTHING. The drugs were not helping and I had few nerve blocks which offered only a few days of relief.

      I was finally referred to Dr. Ducic at Georgetown University Hospital. I had my first surgery to remove a portion of the nerve in July and it seriously reduced my pain. I will have the second (and last) surgery in a week or two. Having a stimulator was not an option for me…as the lead wires can move and the device has to be replaced, etc. etc. etc.

      The negatives to my surgery was a loss of sensation in the back of my head. But, the trade-off was worth it.

      Look up Dr. Ducic, my surgeon…he is in the DC-area, but it might be worth the trip.

      • Kristin
        18 December 2010

        Just so people don’t get the wrong idea about stims. My battery should last at least ten years. With paddle leads and the extra loops my doctor puts in to secure my leads my risk of migration has been minimized.
        I will take that over possible nerve regeneration and loss of sensation.
        I’m not picking any kind of fight just presenting all of the facts.

      • Pam
        27 June 2011

        Hi, Dr. Ducic performed surgery on May 19th. It wasn’t quite what I expected, I thought I was going to have a small incision on the back of my head and I have two that go the entire length of the back of my head. I have not a migraine in that location since the surgery but I am getting headaches and migraines in the orbital part of my head, my eye sockets. I still very uncomfortable and the back of my head is numb. I get sharp quick pains in the back of my head. How long does the numbness last? Will it ever go away? I hope I made the right decision (of course it’s a little late now!)?

      • Cindy
        19 May 2012

        Michelle,
        Just wondering how you are feeling now…did the nerves regenerate and the pain come back all over again? I am getting scheduled for a stim implant as a last resort, I cannot go to a Dr.out of my insurance.
        Cindy

      • Cindy
        21 October 2013

        I was wondering how you are now and are you doing well still with the surgery.

    • Siggy Buckley
      1 November 2011

      I’ve been in constant pain 24/7 for 6 years, mostly at 6 on a scale of 10. Had stimulator which didn’t work (SCS) and last week occip. stim trial as well .I wasn’t sure , had a good and a bad day. Told the doctor. He said that wasn’t good enough. I had to bescreaming for it in order ot get it implanted.but wasn’t sure myself. Since then I’ve been on two SSRI, Pristiq and another Mirtazadine. Since then much better! have you tried these antidepressants that also work on neuropathis /nerve pain? i’m fused on 3 levels in the neck too btw. Good luck!

  8. Marlene
    11 October 2009

    *! I just was recommended for an implant and had NO IDEA how hideously expensive it was! Guess I will live with the pain. I have ON with chronic migraine. I have had 3 nerve blocks and nerves burned on C2,3,4 & 5 (which helped with the neck and arm pain). Now I haven’t a clue what to do! Glad to meet others who have a nightmare with ON

  9. Emily
    12 October 2009

    Marlene: There is another experimental external device they were trialing, that you put against your head/neck. I don’t know what it is called, but you might research. It may not be as expensive as the implants…

    Maybe you can get into a trial like I did – worth checking out – I could not have afforded this either without getting into a trial study. The added bonus is that I get a lifetime of replacement batteries/operations for participating in the trial.

  10. Cathy Malk
    12 October 2009

    Cindy,
    My heart just aches for you. Do you have a friend or family member that would be an advocate for you? With all that you are going through you need someone to fight for you. Someone who will attend and drive you to your doctor appts, find a doctor that will go a step beyond and help you, refer you to the right places, fight your insurance co, etc, etc, etc. I pray you have someone that will help do this for you because you are worth it Cindy. Please hang in there because there is an end to this long, long tunnel you are in and it will be pain relief, I promise!
    Respectfully yours,
    Cathy Malk

    • Cindy Hieronymi
      31 January 2012

      Cathy and Michelle,
      I recently found your kind replies, for some reason I was not alerted to it after you posted. I want to thank-you for your concern and encouragement. As of Jan. 2012, my insurance which is BCBS of AL has STOPPED covering ANY Occipital procedures, especially a nerve stimulation implant. I have no help with thw constant pain now except for drugs. My pain Dr. put me on Nucenta which has helped very much with the nerve pains. My insurance is through my husbands employer at Huntsville Hospital and will not approve any surgeons except on the Huntsville Hospital Physicians and Surgeons list. I am trying to find a way to get around this and be able to see Dr. Ducic (sp?). As of now, I had to close my business and have not been able to work since last year. SInce I am NOT one to be disabled…I believe I can still do something to earn money on days i am not in bed in severe pain. BUT, the problem is the drugs I am on( which I depend on to be able to function), keep me from being employed….employers do not want to employ anyone on oxycotin and nucenta.
      I am so very grateful for my husband, without him I would not be able to go on. I hope and pray others will not suffer as I have and that Dr.’s WILL start to INFORM patients of the possibility of developing O. N. following cervical surgery.

      • Tara
        10 February 2012

        Cindy, I live in AL too and have been fighting with BC/BS with a different headache condition for 3 years now. I have just found a group called Migraine Treatment Centers of America who has a partner physician in Nashville. These physicians perform the Omega procedure – which is occipital and supraorbital stimulation. They fight insurance companies for you to try to get it approved. Good luck!

      • Cindy
        19 May 2012

        thanks, Tara….I wish I could go to Nashville, which is where I am from, but my insurance is with Huntsville Hospital and I can only deal with their doctors….

  11. Marlene
    13 October 2009

    Thank you for the input… it helps. The constant pain is really inpacting my life. I work at home and I think sometimes that Drs think I am less of a priority. My family (frankly) is getting quite tired of Mom being inert or downright out if it. I have to go for a recheck at the pain clinic and to discuss the implant…. there has to be another way!

  12. Alicia
    30 October 2009

    Hi I don’t know if anyone will read this, but im just glad to know that im not the only one with this problem. Not that i would wish this on even my worst enemy.

    Im 22, and i’ve been fighting this for the last year, alog with being increadbly sick all the time, chronic vomitting,diahrrea,migrians of course, and even passing out/blackouts. Its scary. Its like i had my life just whipped right out from under my feet. I had a job, friends and everything a 21 year old should have. Then i got sick had to be rushed to the ER and have an emergancy gallbladder removal, and its been help on earth since. That was last October.

    And now my life consits of always being sick always being in pain, and it never geting anybetter. I’ve gone throw doctor after doctor just to hear the same thing…”i don’t know whats wronge with u, but thanks for your money”.

    Thank the Lord for a doctor saying i can’t help u but i know who might. I got a refurle to the University of Washington in Seatell. And in 3 visits they sent me to a nero and she did some test and came to the conculsion that i have occipital neuralgia.

    FINALLY a name for what i might have. It might not be whats been making me throw up 20+ times a day but its a frist step. You have know idea how scary it is to think that no one can help u that ur just waisting ur money on all these doctors who don’t want to actully give a tricky case a try or anything, unless u’ve been there.

    Its a very hard road to walk down. I’ve become a shut in basicly because now im a broken record. I can’t do the things i love or like, i cant even lift a full or half full milk jug with out falling to the floor from the pain of it and throwing up everywhere. its not pretty.

    but im just greatful that someone is tryin to help me and not just passing me off to someone eles cause they dont want to deal with it.

    so anyways, im in the very early stages of my diagnosis but im hoping that if it is that it can be dealt with soon. im SOOO done with being the sad sick girl!!!!

    thanks for your time.

  13. Emily
    30 October 2009

    Alicia: Hoping you get relief from your occipital neuralgia. Teaching hospitals are great resources for people with unusual ailments.
    Not trying to diagnose your nausea problems, but had trouble after gb removal myself, and you might ask your U of W doctors about.

    There is something also called post cholecystecomy syndrome that some people get after gall bladder removal:

    http://emedicine.medscape.com/article/192761-overview

    Also there is a problem called Sphincter of Oddi Dysfunction that some people who have had their GB removed have:

    http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Disease_ID=7AB086B0-AB01-446E-B011-2E67CAFEF96D&GDL_DC_ID=320F4EDD-0021-4952-83D7-8B0C67B47BFF

  14. Cathy Malk
    1 November 2009

    Alicia,
    Wow, you are going through a terrible time and I am so sorry. I have the the same diag. as you but not all the same symptoms. Are you on any pain medication? You don’t mention if you’ve had an injury but I did and that’s what started my pain (on the left side of my head). Anyway, I recommend you contact Dr. Kim Burchiel at Oregon Health Science University in Portland Oregon. He is the best for implanting the stimulator for occipital neuralgia. Here’s his phone number for an appt: 503 494-4314. His assisant Todd is a bit of a jerk but don’t be put off by him. Alicia, I completely understand how you feel about money wasted on doctors not knowing. I went through years of that! It was so, so horribly frustrating and depressing. Every week I would try something and someone new. I wasted thousands of dollars. I am so sorry you are having to fight this but you will get through this and it will end! I promise! Is it possible something may have gone wrong with your gallbladder surgery? Just a thought. Wishing you all the best.
    Cathy

  15. Alicia
    6 November 2009

    Thanks Cathy. Its great to hear back from someone. The only injury i had before this was i was hit by a car when i was like 4 or 5 and i’d never been in this much pain. I wasn’t hurt too bad by that.

    This just came on all of a sudden, out of the blue. Its almost like a bad present that u can’t return because u don’t have the receipt lol

    I’ve tryed all kinds of pain meds, an none of them have worked. It seems like nothing takes away this pain. I was taking stuff like excedrin and tylonel and such and my nero doctor said that she wanted me to try all natural pain relevers and to give my body time to get all the other chemicals and such out of my system. ITs not been a happy time.

    I thought it might have been something that went wronge with my gallbladder surgery too, but i’ve had colonoscopys,upper GI’s,Xrays,ultrasounds,and i even had to eat a raidoactive hamburger XP, i didn’t even get a super power…at least when peter parker got bit by that spider he got to be spiderman lol. But its all come back normal, nothing left in, nothing extra taken out, all is clean.

    Thanks for the number. i’ll look into it more!
    ~alicia

  16. Cathy Malk
    6 November 2009

    Hi Alicia,
    I am so sorry about your pain. You have looked into so many things. Don’t give up….do you have a friend or a family member that will advocate for you? I know how hard and it is and really impossible when you are in pain to search for answers on your own. You are so strong. You are smart too and that will work to your advantage. I know you will beat this Alicia!
    My prayers are with you.
    Respectfully,
    Cathy

  17. Alicia
    6 November 2009

    Thanks Cathy! Thank u so much for your prayers. I know that we go through every thing for a reason, we may not know what that is while we are going through it, but God will never let us go through any more then what we can handdle, and he will always give us away out.

    Yes i have my mother and father, and my soon to be husband and his family who are always there for me. I’m so greatful for them and for all that they do for me, its just alot to handle not only for me but for all of them as well.

  18. huskyboys
    2 March 2010

    so I’ve been denied for both the stimulator (even though I used my lien for the trial -basically paid for it myself, and had a very successful trial) and the nerve decompression. Ok so I have to appeal, but what is it that made the ins. co change their minds? did you produce certain articles? data? Help?

  19. Becky Stottlemyer
    18 March 2010

    I saw the message from Cathy on August 8th regarding the insurance company denying the procedure and appealing it until it was overturned. My husband has dealt with this pain since 2001 – has had numerous procedures, 2 fusions, stimulator, pain pump, and nothing seems to take the pain away. We are in the process of a motor cortex stimulator but was denied by the insurance stating it was experimental. Can someone give me some ideas of how to get this decision overturned?

    Thanks and will be looking for your ideas!

  20. CIndy Hieronymi
    14 April 2010

    I FINALLY found a Neuro Radiologist who has performed 2 CT guided nerve blocks that gave me some relief for about 6 weeks. I am researching Microvascular surgery for Occipital Neuralgia and would like to know if anyone has had this done and what were the results. The last CT block didn’t last as long so I am hoping for something that would give me enough relief so I can get back to work and have a life…my life seems to be spent in the bed with an ice pack on the back of my head, and a heating pad for the cervical dystonia, and popping pain meds.. and just staying still and enduring the constant nerve shocks in my limbs. We just can’t seem to get my nerves to calm down. I tried accupiuncture and it helped with the dystonia but set my nerves on fire….

    • cathy malk
      9 January 2011

      I am so sorry. I wish I did.
      Cathy Malk
      Bend, Oregon

  21. CIndy Hieronymi
    14 April 2010

    thank-you Cathy for your words of encouragement. I don’t think anyone can imagine in their wildest dreams how painful and frustrating this is until you have to deal with it.
    Cindy

  22. yolanda
    16 May 2010

    I have been living with occipital neuralgia for about seven years. I have had every kind of treatment known to man except the surgery. I’ve been reading up on the different surgeries that are offered and am having a hard time trying to convince my physicians to let me have it (surgery). I realize now that maybe it’s because my insurance might not pay for it. I am currently not working because of it and could barely get them to pay for my other procedures (nerve blocks, facet blocks, rhizotomy). I’m sick and tired of being sick and tired. I am basically at the end of the road with these treatments. The nerve blocks aren’t as effective as they once were. I want my life back. I have two sons to raise and right now, I am no good to them. I have a wonderful support system in my family and they have been helping me for the past two years since this has gotten worse. I’m glad to see that I’m not alone in this. Is there anyone out there who has had any surgery recently? If so, please comment on how it went.

    • Cindy Hieronymi
      31 January 2012

      Yolanda, what is your condition now as of Jan 2012? Did you have the surgery?

  23. Sherri
    23 May 2010

    I have been in pain for over 14 years. I have Neuralgia left and right occipital regions. I had radiofrequency denervation in april and June 2000. They did the right side first then 2 months later did the left side. I had severe migranes, and had talked to numerous patients who had some good outcomes. I must say I’m in more pain than I ever was. I go completely numb from head to toe. I also had to go out of work. The pain is sooooooo extreme. I’m on 3200 mg neurontin, klonopin helps alot with the pain, yet I have built up a tolerance to the pain medications. My family isn’t much help, they treat me as if I’m enjoying being on all these medications. I met with a C-2 track specialist In Philadelphia, and I’m not a candidate for a Spinal Cord Stimulator. My head and neck burn, go numb and sting 24 hours a day. I have prayed for years for this pain to go away, and I still haven’t accepted that this is a permanete injury. I have a 16 year old son, and he doesn’t understand what I’m going threw. The nerve blocks only lasted for a few days of pain relief. It realllllllly hurts so I can relate to you all.

  24. Sherri
    23 May 2010

    I will pray for all of you. It is so very scary, and people don’t understand unless they are in your position. I haven’t been to a pain clinic for awhile. I’m considering on going back, I was told If I have intercranial surgery I would be pain free, although paralyzed from the head down. I’m not taking that route. It’s sad to be ok one day, and then your whole life changes. My heart goes out to all of you. Not to sound crazy but I’m just putting it in God’s hands, because doctors are just human beings practicing medicines.

  25. Robyn
    24 May 2010

    Hi Yolanda,
    I feel like it’s me talking when you write. I too have a couple of sons and am debilitated by migraine headaches. I have tried so much medications, massage, chiro, occipital nerve blocks…..and nothing has worked. I’m down, missing work at a job that I love and feeling like I’ve been dead for the past year. My problem is that there are no “migraine specialists” in my area. and the neurologist that i was seeing has now switched his specialty to MS. I’ve been refused by another neurologist because I’ve already been diagnosed with migrianes……Problem is no one knows what kind of migraine I am getting, therefore say they don’t really know how to treat it. Ugh! I know your frustration, what kind of surgery are you having maybe I can look into it as i work in a surgical area.

  26. Marlene
    25 May 2010

    I can totally relate to not be able to accept this as permanent! I have done everything short of the nerve stimulater (can’t afford that!). I am on Gabepentin which makes me comatose type tired and the Dr wants me to go at least 2x what I am on. I feel like I have lost control of my life and now I have been told that it probably will never go away! My neurologist wanted to put me on disability but I am self employed and have not earned enough credits. To put a cherry on top… our COBRA ran out and the new insurance that we could get does preexisting condition for 6 wks to 12 months! My husband has been great but I also worry about the impact on my son (15). I have a LOT of people who can’t understand how a simple headache can impact my life so dramatically.

  27. Robyn
    25 May 2010

    Hi Marlene,
    I will not allow myself to give up. But reading this blog has helped me to realize how lucky i am. I live in Canada,and our health care is government funded through taxes.
    I have spoken directly with my Neurologist today,who is willing to refer me to another Neurologist, and possibly out of province if need be.
    I am also re-starting the nerve blocks. They are now being done by an anesthesiologist that I work with and respect very much. He does many of the nerve blocks where I work. I’ve been praying every day, and finally feel like today might just be the start of recovery….I’m still praying.
    I work on a spinal surgery unit so am very familiar with Gabapentin and straight out refused it when my GP suggested it. I can’t feel like a deer in the headlights, especially with my job and two small children. It does wonders for some people, but my body tends to be sensitive to sedative effects of meds.
    I’m also having laser accupuncture tomorrow. I will let you all know how this goes……….and what it is ’cause i’m not too sure myself. LOL.
    It makes me happy/sad to see that I’m not alone. This ON is killing me. Just want to live again.

    • aliscott
      24 October 2011

      robyn – whre do you live – did you get help? I am suffering and
      like you. Alison

    • aliscott
      24 October 2011

      Ill finish my email since I didnt know if it would be posted. I am from New Brunswick and am desperately loooking for help with ON. Did you ever get any help and where did you get it. I hate our health care system – I cant get anywhere. Thanks Alison

  28. nikki
    27 July 2010

    hello everyone,
    my name is nikki and i am coming up on my 24 birthday in a couple days and i have been battling with occipital neuralgia for almost 6 years now. i have tried numerous medications, injections, and other forms of physical treatments including physical therapy, massage therapy, and healing touch. unfortunately…..nothing has helped even in the slightest bit. it has become a real problem in my life leaving it hard to take care of my son, do my school work ( i am a full time student working for my associates in psychology), and working. i am at a loss and fully considering having the surgery done. if any one has any other pointers of things i could do instead of surgery i am all ears!

  29. Kelly
    8 November 2010

    my name is kelly and have been dealing with occipital neuralgia for going on 4 years. i was in the wrong place at the wrong time and was hit in the back of the head with a bar stool. i’m 27 years old and also have a seizure disorder and because of the pain being so bad my seizures are out of control. i went from being a normal 27 year old with a job, a husband and a life with controlled seizures. to having to depend on my parents for everything. i can no longer drive, because my seizures are out of control and my pain management dr. has had no choice but to put me on heavy opioid meds.my ins comp. said i can no longer have nerve blocks and we are fighting my ins for the neurostimulator but they are claiming it to be experimental. i would give anything to have my life back instead of seizing and being in pain. all i see is hurt and worry in my parents eyes. and there is nothing that can fix it. if anyone has any ideas on how to get my ins. to reverse there decision that would be a great help. thanks kelly

    • Kristin
      18 November 2010

      I have had ON for 12 years. After a 2 year battle with my insurance and 2 denials a third party reviewer over-turner their decision in September. I having my stimulator put in in December. They also said it was experimental. we presented them with almost three inches of research. My non-profit lawyer was amazing. In the end it came down to the fact that my third party reviewer was not a medical professional but human. He said in his response that if this doesn’t work it can be reversed. If it does, I can have a life again.

  30. Kristin
    18 November 2010

    I have had ON for 12 years. After a 2 year battle with my insurance and 2 denials a third party reviewer over-turner their decision in September. I having my stimulator put in in December. They also said it was experimental. we presented them with almost three inches of research. My non-profit lawyer was amazing. In the end it came down to the fact that my third party reviewer was not a medical professional but human. He said in his response that if this doesn’t work it can be reversed. If it does, I can have a life again.
    My surgery would have been $90,000 up-front if I had to pay. Let’s not place all the blame on insurance (although a lot is there’s). Doctors and hospitals are cutting HUGE deals with insurance companies that they don’t cut with individuals. That’s just wrong too.
    Don’t give up. Explore all the ways you can appeal your insurance’s decision. We also contacted our congressmen and have gotten some responses. It was after my reversal but they did get in touch. Good luck.

  31. cathy
    14 December 2010

    good luck with your surgery kristen. i had my surgery back in aug,2009 for the occipital implant. for me it has not worked at all. such a disappointment esp. for those around me that love me. be sure, very sure it works when they give you that week to test the device before they permanently implant the device. They actually gave me 2 weeks. anyway it hasn’t been my end all.
    it is funny what i wrote about ‘fighting the insurance co’. we didn’t really ‘fight’ them. i must have had more energy then..i feel so beat down with over another year of pain later. we just jumped through their hoops as they drug out the process. actually my husband wrote the letters and i suffered in pain and did my best with our twin toddlers. after we appealed their denial after a year of their hoops a dr. in sf, calif happen to approve the surgery because he knew of the surgery and didn’t buy the experimental bs. good news but actually bad news for us. the other piece is our insurance company then dropped our family plan completely. 2 weeks to the day that I had the surgery. now i have my own insurance plan which has outrageous monthly copays because occipitual neur. (if that’s the true diagnois) is now a pre-existing condition for me plus I have this battery in me that will have to come out, etc. the stimulator surgery creates a need for another surgery. My husband and kids even had a hard time finding a plan..my son was denied several times for breaking his arm. He was 5 years old! And it was over a year a go at the time the insurance comp. terminated us. Anyway, there are millions of sad insurance strories but being self employed (my husband has been a real estate broker for 30 yrs) made it hard to begin with. It seems like 1st I trouble my family with my nerve pain and then my surgery didn’t work which was a big inconvience for my family to travel 6 hrs. round trip and then we lose our insurance. ugh. staying married becomes very, very difficult.
    peace and hope to you all suffering. there is hope i know there is. god bless you all
    cathy

  32. Mary
    20 January 2011

    Hi Marlene,

    I have had ON for 4 years now, and have been on absolutely everything anyone could think of – including Gabapentin. I was up to 1200 mg per day of that med, and was barely able to slog across the room – AND I was still having pain! The first few days were great, but it didn’t last. I have had two radiofrequencies and am currently trying to get another one scheduled. I have found that the only meds that will actually give some relief are Excedrin PLUS Fioricet and sometimes PLUS Maxalt 10mg. I am having some aspirin sensitivity issues, which is why I am pushing for another radiofrequency. I did find that after the second radiofrequency my pain was reduced to the point that I could take the Fioricet plus Excedrin usually just one time a day – I had been taking it two or sometimes three times a day before my second radiofrequency. I will NEVER take Gabapentin again in my life – I was beginning to experience suicidal thoughts – feeling that I did not want to spend the rest of my life like this, and the thought flitted through my mind that I could end it. It scared me so badly that I started tapering off that day. I do sometimes find some relief with ice packs also and I feel fortunate that my pain has not remained at the level where it started. I began with pain like razors going up the back of my head and into my eyeball, riding in a car was excruciating as was just about everything else. I have come a long way since that point, and am going to continue to insist on being treated until I can get to a point that my pain is gone.
    I was able to get a lot of relief initially through the use of Botox injections directly into the nerve and surrounding muscles – this stopped the razor pains but has not stopped the constant “tooth ache” like pain or the pain creeping into my eyeball every night. I am really hopeful that this next radiofrequency will take away what has been left of the nerve pain.

  33. Barbara Brown
    10 March 2011

    I had injections in the occipital nerves (both sides) almost 4 years ago. The last set of injections I had was 100% alcohol based and was suppose to ‘kill’ the nerves and stop the headaches. I believe I now have permanent nerve damage due to those shots. My head hurts more now than it did before. It feels like my head is in a constant vice press being squeezed and it is very sore and becomes inflamed feeling more often than not. I cannot even lay down at night to sleep because my head hurts so much, I have to take ambien, but when I wake up my head hurts even more because of the pressure. I am wondering if anyone else out there has had this experience and if anyone knows if there is anything that can be done to repair these nerves. Any insight or advise would be welcome.

  34. Kristin
    16 March 2011

    Anytime you try to kill the nerve the nerve can grow back and cause more severe pain, just like with surgeries that severe the nerve, I’m sorry I can’t offer advice for repair. I have an occipital nerve stimulator. That may mask your pain.

  35. Barbara
    13 May 2011

    I feel so blessed to have found this website/community of ON sufferers. I am 41 years old and was injured on the job in January 2011, in a slip and fall accident that injured my neck. Over the course of months since my injury, I have been in constant neck pain, base of skull pain, and constant horrible headaches. I have been diagnosed with ON, however dealing with workmans comp has been a nightmare. I’ve had one epidural done, but it was so painful and gave little if any relief. I long desperately to be pain free. I take pain medication daily but it only takes the edge off the pain, I am never pain free. I live in Alabama and have tried researching if there are any doctors that specialize with this, however its very vague, it seems that most doctors that deal with this are listed as pain management doctors or neurologist, not that they actually specialize in ON. I am very concerned about finding the right treatment, because I want to be pain free and I know that dealing with workmans comp is a constant battle and I know that with each requested new doctor or treatment, that it seems workmans comp gets slower and slower in there approval of the next step in my treatment. I hope you each find the right treatment and I pray you find relief! Please if anybody can tell what they’ve found to be the most benefical treatment, the most pain relieving treatment, I would deeply appreciate it! God Bless!

  36. Alicia
    24 October 2011

    Hi my name is also Alicia not to be confused with the lady that had gallbladder surgery. I had ON surgery on my right greater occipital nerve in January 2010. A blood vessel was wrapped around the nerve so the surgeon free the nerve by re-routing the blood vessel. I experienced immediate relief after surgery and great relief 3 months post surgery. I was always convinced that there was an entrapment of some kind and sure enough that was the case. I also had the misfortune of falling and striking the back of my head about 4 months into my recovery. The surgery aboslutely did make a difference but I am now experience ON pain because of the fall. I am under the care of a surgeon and I will likely (and without hesitation) have surgery on the right lessor occipital and left great occiptial nerve.

    • Vicki
      26 November 2011

      I also have been suffering from ON for approximately nine years. I have had PT, injections (facet and Occipital blocks), tons of medication which mildly ease the pain, anti depressants (which do not work at all), massage therapy….the list is endless. After this last round of debilitating pain and being completely bedridden for three days I am in search of a surgical option. I have been a Pain nurse for a few years (ironically) and have seen the stimulator work on very few occasions for this problem. So few in fact that it is not an option for me. I think surgery as a permanent corrective action as opposed to having something implanted in my body is the course of action I would prefer to take. Any names of surgeons would be greatly appreciated.

  37. sandi f
    18 November 2011

    ive had ON on both sides of my head for 8 years now…i finally found a doctor who gave me steroid shots in the head which worked for 6 to 8 months at a time….well she left the practice a few months ago and now i don’t know what to do…im in pain again…i never knew u could get surgery for this im gonna have to find out about it………i cant stand the pain anymore and no amount of pain med helps…………..

  38. Judy
    30 January 2012

    Hi: It really saddens me to read all your stories knowing that I will soon be in the position that you all are in. I had a cervical fusion in 2009 and now I am experiencing the the neck and headache pains.
    Doc says its the ON. I had a series of 6 shots at once without sedation end of December. No luck with that at all! I have appt. with doc 2marrow because I fell on ice last week and my symptoms have worsened. He wants to see me b4 I go forth with the next shots. I cannot Imagine that some of you have suffered with this for years. I am only on the beginning and it scares the heck out of me. I did ask my Doc what would be the end result and his reply was a Laminectomy ( not sure of spelling). The procedure would be that they scrape the bone around the nerve to release the pressure. I had a laminectomy on the c5c6 level about 15 years ago and it lasted till 2009. Not bad I think. So, did any of you have this procedure done and did it work? I am really scared about the stimulator idea. I pray that we all will be pain free someday. Thank you for any response received.

    • Judy
      31 January 2012

      Hi: I had my doc appt today and I just want to let some of you know that b4 you go forth with the stimulator, etc. MAKE sure you ask him or her if the “laminectomy” will work. He told me today that no they DO NOT do the stimulator procedure anymore. He said to many risks with it. I started taking Gabapentin 2 days ago and I cannot tell you how awesome I feel. Hopefully this will work. I asked about the ON being “killed” by the shots and he said NO! The shots only make the nerve “Happy” as he said. His philosophy is to do what you can to relieve pain B4 any surgery takes place. and I believe him! so please people ask your Doctors about the laminectomy surgery’s. Maybe they can help you. I have an email address if anyone wants to talk about this. I hope and pray that all of you can find decent doctors to help you out. I live in Wisconsin, so if anyone wants a referal I can give you one. Good Luck to all of us and stay positive. Thank you.

  39. Amanda
    24 February 2012

    Hi! I’m 23 soon to be 24. I have been experiencing these headaches since my early teens. I was diagnosised w/ ON a little over a year ago. I’ve tried physical therapy, and nerve blocks (4). I’m on my 2nd neurologist. They will give me NO pain meds for my headaches. I got ibprophen 800mh ultram 50mg and flexril 10mg from my faimly doctor to take as a maintenance meds. I make multiple trips to the E.R. just to get a lousy shot a dilaudid for 4 to 6 hours of taking the edge off so I can rest. The anestesiologist said after one more nerve block if it does not help that he will refer me to get the RF procedure. I’ve looked this up and I am very unsure of it. All I want is to be pain free. I spend most of my weeks at work suffering and weekends in bed missing out on family and regular life just to survive the 5 day work week to pay my MEDICAL bills!!!! I am open to ANY feedback.
    Thank you in advance,
    Amanda

    • Barbara Brown
      27 February 2012

      Amanda, Just don’t let them give you what is called a 100% alcohol nerve killing shot in the occipituls. I had that done about 5 years ago now, and I have nerve damage now and my head hurts all the time 24/7. Ask your Dr. for Maxalt. It may provide you with some relief. It’s a migrain intervention drug you dissolve on your tongue so it gets into your system fast. Good luck to you and may God bless your efforts.

      • Amanda
        27 February 2012

        Ive tried that med before it did nothing for me.

    • phillip hale
      28 February 2012

      My wife suffers from this condition and has had the RF done twice. I can tell you it works but the only drawback is that it is not permanent. The first time it wore off after 2 months, the second after a year and a half and she is now in the same boat you are with her next RF scheduled for next week. She has Roxycodones and torredal shots for relief when the RF wears off but it does not take the edge off as good as the dilaudid. Unfortunately the ER will only give the dilaudid once and the next day they will only give out torredal and perkasets. Her RF wore off over the weekend and her pain shots we had at home were expired because she hadn’t needed them.

  40. Amanda
    29 February 2012

    I am going in for my 5th and final nerve block tomorrow. Then the next option is RF. I’m ready for a more permanet fix…. I wish they would give some kinda at home shot. There was 4 straight days I went to the ER and got a shot of dilaudid but then they said I had to see my doctor who does nothing… sounds like there is no help fir this condition….

  41. georgia
    18 May 2012

    hi, i’ve had on since 2009 after a 2nd radiofrequency 7months apart. the medial branch nerves had not regenerated. i was pain free. the doc hit my occipital nerves. i didn;t know about how the nerves regen’t then. i had facet joint disease. i was working as a nurse i can’t forgive myself for not reseaching. i just thought the pain would stay gone longer. i’ve lost my life. i’m alive but i have no qualility. be carefull with the burning. i’m on morphine and oxycodone. i want my life back just like you all. i want to have the nerve froze. cryoneurolysis. does anyone know about this? my heart goes out to all.

  42. Cindy
    19 May 2012

    My pain Dr. put me on Nucynta which has helped some with the nerve pain and now it comes in a slow release form. I am getting off Oxycotin and replacing it with the slow release Nucynta. I will be detoxing myself next month…and am not looking forward to the experience but will be so glad to get off of it.
    My Dr. is also trying to help me with my insurance so I can try an implant, even though he said it still has a 50/50 chance of helping, and after a while it even drops to 25 percent….not very encouraging.

  43. michelle
    15 February 2013

    I had the occipital nerve surgery at Georgetown 2 months ago. It completely relieved all my pain in the back of my head but now I am starting to feel pain in the temple area. I felt completely normal and no pain anywhere after the surgery but now it seems to be creeping back in. I feel pressure in my head and temple most of the time but the pain is 80% less than it was. Evidently there is another surgery that can be done to the nerve that feeds the temple so that may be next. They can also completely remove the occipital nerve.

  44. Melissa
    22 April 2013

    I had the bilateral lesser occipital neurectomy performed in 2010. It did help with some of the chronic daily migraines but it also took away my early warning system. If I had knots and pain in the back of my neck and base of my scull I knew I had to take some medication because a migraine was coming on. Now a migraine seems to hit full force and out of the blue making it harder to treat let alone prevent. This past December I underwent a second round of “migraine surgerys” where Dr. Guyuron severed the nerves in my temples and forehead and shaved down the muscle in my forehead, similar procedure process they do for facelifts. I have noticed a 60% decrease in the numbers of daily migraines and the severity is also less. My 4-5 a week migraines with 2 ER visits a month have dropped to 2-3 a week and 1 ER visit every 2 months. Might not sound inspiring but it really is a big improvement from what I’m used to! I’m finally getting some control back and feel a lot less helpless, the surgery was the best decision I could have ever made for my family and myself. I now have “good days” that I can spend with my amazing 14 month old son.

  45. Danny
    27 June 2013

    Have just been diagnosed with ON. After 4 neurologist and multiple doctors and meds. I stay in bed most of time with dilaudid shots given at home. I am almost out of time to take off for work. I am scheduled for surgery in two weeks to clip the occipital nerve. I am very scared of this but as an alternative, I don’t feel I have any choice. Anyone had this done and what were the results.

  46. susan hale
    27 June 2013

    I have had the ON for the past 10 years, the only thing that works for mme to bring my pain down to a managable level is the RF. It lasts about 10 months then I have to have it done again! I have tried the pain shots, pills, botox, accupuncture and nothing else works. I am scared to try the surgery to cut the nerves due to all the possible side effects and our insurance will not cover a stimulator.

  47. Kevin g
    21 October 2013

    I don’t know how long these patients were followed for after surgery, but a major concern is the potential development of deafferentation pain in the distribution of the greater occipital nerve which may start 6-12 months following nerve injury or surgical neurolysis. I invite comments on this matter.

  48. michelle
    21 October 2013

    I am almost1 year post operative from the ON surgery. There is no pain there at all. It does feel wierd sometimes but not painful.

    • Lori
      12 January 2014

      Michelle: Did Dr. Ducic perform your surgery? I have a 15 year old daughter that was diagnosed with post-concussion syndrome over 9 months ago with whiplash from playing in the backyard. She has been on medications which did not work, injections, acupuncture, and physical therapy. The first two injections helped a little bit, but she still has constant pain in her neck that radiates to her head. The headache has a constant pressure that never goes away near her temples. She also had migraines since she was three, but only gets a true one now, once every three weeks. She seems to be handling things more with school work and everyday life. She thinks it’s because she is adapting to the headache and getting used to it. She was a candidate for the surgery, but it is our last resort especially since she is so young. Do you know of others who had the surgery from him and also is scar tissue a concern? Thank you for your time and help.

      • Michelle
        2 February 2014

        Lori,
        The surgery changed my whole life. I recommend dr ducic highly. My neurologist works with him at Georgetown. I suggest seeing her. She will tell you whether or not your daughter should do it. She is very conservative. Here is her info….Maureen Moriarity CRNP at Georgetown

        I had the surgery 1 1/2 years ago and I still have no pain and scar tissue is not an issue at this point.
        I wish you well

Leave a Reply

 

 

 

Back to top
mobile desktop