Cervical Radiofrequency Neurotomy (Ablation) for Migraine and Headache?

Hello Nancy,

You pretty much hit the nail on the head (pardon the pun!)-- I do not want this procedure.  I want to find the cause of the problem and fix that, not mask it by damaging or destroying a nerve that I happen to be kind of attached to.   I appreciate the info tho, and will most likely hang onto it and pass it along to my hubby.

Yes, I've been to Dr. Cady's clinic in Springfield, 6 hrs away.  On my third visit the doctor I was seeing declared me "too complicated" for their facility (they like IV DHE treatments which I tearfully learned was not an option for me due to Raynaud's, as well as botox which was not covered under my insurance) and suggested Mayo's with their hospital/clinic, which is not an option for me at this time.  Tho I'm unhappy at this turn of events, I do recommend them there as they are very professional and caring and I know they've got many very happy patients. 

I'm currently seeing a Neuro who suffers migraine and his wife also has a migraine variant (can't remember which one).  He worked at the prestigious Cleveland clinic before coming here as a teacher at A.T.Still University (of Osteopathy).  Because of my dystonia (a genetic movement disorder related to Parkinson's) I need to stay with someone who also knows it and it's limitations re: medications etc.  I would love to have a visit with Dr. Cady himself sometime, but I understand that he is much too busy with research to see many patients anymore.  The tentative Dx of Hemicrania Continua and chronic Cluster Headache fall under the category of Trigeminal Autonomic Cephalgias and are currently being tossed around (doc's just sure that's the case, I'm a little more reluctant) due to symptoms of some of my headaches and their reliable response to indomethacin and occasionally to oxygen.  The Dx of migraine is a textbook sure thing with auras that are quite profound.  Now that I've had the pleasure of relief of my neck pain and had the shooting, burning pains of the accompanying neuralgia return, there is little doubt now that my doc was right and that some of my headaches are also related to those issues as well.   Unfortunately, they also trigger migraine attacks for me.

I remain hopeful that someone here might be able to help with their experience with RFA, and if not I know that eventually I will find something that will be useful to help with the pain.     

Thanks a bunch Nancy!

I'm off to the chiro for a little relief.  I'll write back soon...

Ellen  

Friday was my doc's appt.  Pain specialist said he felt the block failed, even tho I got relief from the steroids as my headache did not 'miraculously' disappear with the block.  He then told me that I was a poor candidate for RFN and he now wants me to try a stimulator implant for both sides.  Apparently he has had excellent success with these.  So now, off I go trying to find as much information as I can about neuro-stimulators.  He was willing to make an appointment as soon as I could get in, but I put the brakes on and told him that I felt there were many other things I had not yet tried first, that I considered this to be toward the end of my options even tho I am bordering desperate for help.  I am lucky.  The indocin does give me some relief.  He said my problem was that I am over 6 months with chronic pain (goodness, even 6 years sounds pretty short at this point) and it's often very difficult to treat those whose nervous systems have been like mine for a long period of time.  Part of me was relieved-- no nerve damage for me-- then the reality of it sunk in when he said that there was nothing he could do for me if I didn't want the stimulator.  Nothing is a very profound word for someone who has been suffering like this. 

Yes, we doctor at A.T.Still University of Osteopathic Medicine.  People in this area are frequently sent to Columbia, MO (where my pain doc is) for treatment.  I as given the name of a neuro in St. Louis at Barnes who came highly recommended.  Perhaps it's time for another opinion.  Again.  I hate going this route, but it's the best I can do for now. 

Other things I'd like to look into:  sleep study, Lyme Disease, another MRI (my last one was 2 1/2 yrs ago), possibly a functional MRI this time as I feel sure that much of this is related to my neck issues, tho it's true I have other headache issues that are not realted.  I'd like to get my thyroid stabilized again before considering something drastic, and I'd like to try a tanning bed for a while.  Sounds silly, but because I am forced to spend most of my days in a room where all the windows are covered with trash bags to keep out the light, and I only get a few minutes of sunlight a day when I feed my horses, my vitamin D levels have been very bad.  I am currently supplemented for that, but Sunlight is the best way to deal with that kind of deficiency and that's as close as I can get right now, and I figure it's not going to hurt me to try it for a month.  I want to get my Vitamin B levels checked thoroughly.  I also have a lump in my neck at C2 that everybody but my chiros have been blowing off for 1 1/2 yrs.  It's probably nothing, but I sort of think it should be checked out anyway.  I'd also like to try some alternate NSAIDs as Indocin + thyroid gives me a lot of skipped beats etc which are becoming very uncomfortable.  I'd like to talk to an ENT and see if there are any issues there also.  I would also like to get hooked up with a physical therapist to see if strengthening my neck might help, and my Chiro/friend told me about something called an Alpha-Stim that may be useful for headache and my neck pain at the same time.

So you see, I think I have a way to go before deciding on something as radical as a neuro-stimulator.  They may all be dead-ends, but at least I won't spend the rest of my life wondering if I might have had other options. 

Thank you for your responses and your support.  If you think of anything else for me to try, or any other words of wisdom, please let me know.  In the meantime, I'm going to keep on looking!

Ellen

Hi Chris,

Unfortunately, I drove 3 hrs and waited in the waiting room another 2 hrs only to be told that he considered my block a failure and would not do the RFN.  (A phone call would have worked for this?) The cortisone was an immense help for me, but he said that it was the lidocaine that would tell the story, and that the cortisone I got was a small amount.  Small or not, I became worse after the cortisone wore off about a week before the appointment, and am continuing in that direction.  Strangely (or not) I did not want the RFN unless as a last resort as I still feel it's important to fix the CAUSE of the problem instead of just covering it up, but when he told me he would no longer do it I became quite depressed and tears welled, unbidden.  I suppose I had comfort knowing that I could still keep the procedure in my 'back pocket', but when that was taken away I felt like there was nothing more that could be done. Thankfully he told me that he considered me a good candidate for a nerve stimulator and wanted to make an appointment to have a trial one put in asap. Again, I put on the brakes, wanting to find the cause of the problem in my neck, but again, find some comfort knowing I have 'one more thing to try' waiting for me. Last night was very bad for me.  Moving my neck sounds like very loud rice Krispies and the pain is quite bad.  The resulting spasms are triggering not only the occipital pain, but also the migraines again as well, but I'm determined to keep looking for other things as yet untried for me before resulting in stimulators that will preclude me from further MRI's (I am currently at heightened risk for both brain and thyroid cancer due to another radiation procedure years ago) and have me tied to this doc in perpetuity while not knowing what or if there is anything that could be done to fix my problem.

I'm moving forward now.  The holidays are here and I'm trying to concentrate on better things... my family who loves me, and on making this time one of joy and happy memories for them and myself.

I'm so sorry your procedure left you feeling worse!  I can't imagine life feeling even worse than I do now.  One other person on another board wrote to me, hopeful, but after 4 weeks still feeling worse.  My prayers for both of you are that you find something to help you so that you're not left helplessly swimming in a sea of this kind of pain. 

Thank you very much for writing.

Ellen 

Oh man, it does sound like we have much in common. 

After the blocks were deemed "not successful", I was told RN was not an option for me.  This really hit me like a brick upside the head.  I was very leery anyway, having communicated with people who had worse pain that had become intractable after the procedure.  I was truly afraid that, with more pain I might not be willing to survive it any longer. 

I was given the option of a nerve stimulator, which I denied... for now.  I'm afraid that my well-meaning pain specialist is probably thinking now that I don't want to be helped.  He couldn't be much farther from the mark.  This is the risk you take when you follow your heart instead of a doctor's instructions I suppose. 

In my case, it has so far paid off. 

I found a few more pieces of the puzzle when I demanded testing for vitamin deficiencies I suspected I might have based on research I'd done on my own.  It was a hard fight, but I got the testing and the results-- serious deficiencies that are most likely genetic in origin.  My nutrition is better than 90% of the population and free from chemicals, preservatives etc.

Getting these fixed, in addition to stabilizing my thyroid levels (again, which alone did help, but not enough to make me functional) made a big difference.  I have had several good days... actual headache-free days since beginning treatment.  Auras have been less intense- a real blessing.  For me, it's a complicated picture.  Many things going on at once.  I'm (so far) glad that I didn't have the RFN.   It wasn't right for me. 

I'm so glad that you wrote here though.  Most people find relief with much simpler things than this and stimulators.  For the few of us who run out of other options, there isn't much in the way of chat about them to get a feel of confidence in either procedure.  I'm sure you've helped many people with sharing your experience, myself included. 

Thank you so very much. 

Ellen,

Do not let anyone tell you what you know is right for you!!!  I do not have a neurologist, mine died 4 years ago and no other neuro is willing to take on "my complicated case."  However, I have a wonderful pain management doctor I have been with for over 10 years.

Like you I do alot of research and I bring it to him,  he is always open to any suggestions that I have and is willing to help me ride this pain.  He has come from his home to the ER when he is not on call to personally adminsiter the large does of medication I need.  He has been a godsend!  However, because of me he no longer takes headache patients. 

Keep searching for what you know will help you as I will keep doing the same.  Keep me posted.   SJR

First off, you're singin' my song!  Thanks for the support and words of wisdom.  :)

On the Doc...You are so VERY lucky to have him.  I think my current Neuro wants badly to help me, but it's difficult figuring everything out.  Too many docs with endo, neuro, pain, and GP all mixed together.  I just found out I have yet another autoimmune disease.  yippee.  Maybe that will lead us forward. 

Hang in there.  I'll write when I know more. 

Ellen,

I am scheduled to have a radiofrequency ablation on the nerves in my neck to treat chronic headaches.  I had a diagnostic done a few weeks ago where they just used anesthesia to numb the nerves and it worked great for about two days.  The diagnostic was to test if RFA would be effective.

For the RFA, I will not be awake.  I am told it is about an hour and a half procedure, outpatient.  I've read that for about 2-4 weeks following the RFA, you can be in a lot of pain, but then the pain goes away and you can be pain free for a year or longer.

I have had chronic daily migraines and tension headaches for many many years.  My nuerologist thinks this will relief a lot of the pain, especially since the diagnostic gave me short term relief.

Susan/Colorado

Oh Susan, this is wonderful news for you!  I am so excited you may be getting that kind of relief!!

Please let me know how things go.  Even perhaps describing the procedure and your experience with it?

I truly, anxiously await your response (pun intended lol!)

Ellen

Ellen,

Will let you know.  Did you ever get help for your migraines?

Susan/Colorado

Well, like most here and elsewhere, it's a work in progress isn't it.  :) 

The only choice I was given was neurostimulator, which at this point I won't do because I"m not interested in covering anything up at this point.  I have too many other issues going on that could be affecting my headaches (migraine, cluster etc) that need to be addressed first. 

ex: I just spent the day 3 1/2 hrs away at the rheumatologist because I now test for an additional  autoimmune disorder.  Rheumy doesn't think he can help the headaches, neuro thinks if it's because of autoimmune (or exascerbated by it) there might yet be help. 

I don't know.  I'm just hanging on with fingernails today.  Not a good couple of days.  :(  I need my normally optimistic self back. 

This too shall pass. 

Susan,

How are you feeling now since you had RDA?  How are your migraines?

It's been about 10 days since the radio frequency ablation on the cervical area of my neck.  I wake up feeling pretty good, but the neck pain begins late morning and gets worse as the day progresses.  It's not excruciating as some people have expressed.  But, it does hurt and I have been getting headaches in the evening (pain level 4 - 5 out of 10) - don't know whether they are a result of the neck pain, I'm guessing they are.  I think it's too early to tell whether the procedure worked as far as controlling the migraines.  I did wake up last night with a major migraine last night (pain level 8 out of 10) and took Imitrex to calm my pain.  I woke up and still had a headache of about pain level 5 and the headache finally went away by 1pm, but neck pain still there, but so far today the neck pain not so bad as other days, so I am seeing improvement.  The surgeon/pain specialist gave me a TENS unit (transcutaneous electrical nerve stimulator) which is a device that has pads that act as electrodes and you put them on your skin where you have pain and it is supposed to block the pain signal.  It worked for the first couple of days, but then I think it started to irritate the neck and make the pain worse.  I was also given lidacaine patches to put on my neck to help out with muscle stiffness, they worked a lot the first few days, but I'm not so sure they're helping now.  I think the nerves are still "on fire" in my neck.  One of my doctors gave me this analogy.  It's like having phantom pain - like when someone has had thier leg amputated and they still feel pain in their leg even though it's gone because all of the nerves going to the brain aren't gone.  Same with the RFA - the nerves weren't completely obliterated, so they can still send pain signals, but they should go away after a month.

 I went and saw my neurologist and he's sending me back to the pain specialist/surgeon who did the RFA to see what he might be able to do to reduce neck pain or to see if they got all the nerves.  That was a bit of a surprise.  But I am hopeful that this procedure will work for me.  It may take up to a month for the neck pain to go away.

I will try to keep updated posts here so everyone can see how I do to gather information for themselves!

Oh, by the way, during the procedure, I WAS NOT 100% unconscious during the procedure.  When the doctor had the needle on the nerve, in order to make sure it was the correct position, they stimulated the nerve which felt like a wierd muscle twitching, and I had to verify what it felt like.  They gave me some anesthesia, but not enought to put me all the way out.  The procedure itself was not painful.

Again, will keep you updated!!

What is your experience with migraines?

Thanks for your update Susan, I read about you while researching RFA for my husband who has had chronic neck pain, face pain, and migraines for 6 years.  Well, he had his procedure this morning so I will keep you posted. He has been icing his neck all day and not much else to report yet.  Like you said it will take awhile to see results, but we are hopeful.  I will keep my fingers crossed for you also.  I'll be anxious to hear good news from you.  Thanks again!

Thank you guys for posting about your RFA experiences.  There aren't a lot of people writing about their experiences, so this is a really great conversation.

Susan,

How are your headaches now.  My husband had this procedure 12 days ago and still has headaches.  Just wondering if you've had better results?

Thanks,

Sandy

What city did you have this done and what is the doctors name..desperate

Where was this done and who was the md? Thank you so much

My husband had the RFA procedure on his neck.

This did not solve his migraine problem.

Hope you get some relief from this terrible problem.

My pain specialist practices with other doctors in Columbia, MO.  Do a search with the phrase "pain specilist" of "pain management specialist" and the name of your state or nearest larger cities.  You can also do a search with the phrase "Radio frequency ablation" or "Radio frequency neurotomy" and the name of your state or nearest larger cities.  If you still have no luck, find a pain management specialist and talk to the office staff.  If that doctor doesn't do the procedure, they can tell you who is close by that does. You can also do a search for "Neuralgia doctor" and that will find you a doctor who is a specialist in dealing with this type of problem.  They should be able to help direct you.  You can also do a search for "neuralgia radio frequency neurotomy" or  "Neuralgia radio frequency ablation" and find some names to start with.  Don't be shy.  Ask for help.  Your doctor should be able to refer you to a nearby doctor who does the procedure.  A physicians referral will get you in much faster.  You may have to ask for one however.  There are some doctor who are decompressing some of these nerves now too.

If you are still having trouble, send me an email and we'll look together for someone close by you, okay? They are there, you just have to find them.

I pray you find relief soon...

Ellen

I work with a neurologist in Denver, Colorado who referred me to a "pain specialist" who did the RFA procedure itself.  My neurologist is Dr. Michael Ament and the pain specialist is Dr. Robert Brown.

I had the procedure in late August 2008.  It reduced the intensity of my migraines - but it certainly did not make them go away altogether.  I don't feel them as much in the back of my head where they "ablated" or destroyed the core of some of the nerves, but I do experience more pain on my forehead and crown of my head now.  I don't know if that's because before my entire head hurt and now I'm just aware of part of my head hurting or what.  I do think the procedure is responsible for giving me some headache free days and some low-grade headache days.  I can be more active now rather than be on the couch with an ice pack all the time.  Before the RFA, I couldn't even remember when I had a day without a headache.  It had been 9 months to a year.

For me it wasn't the miracle cure I was hoping for - but it did help.  I still have to avoid all the same triggers as before.

As far as surviving the procedure - it's not a big deal relative to all the headache themselves.  You just have to be stong mentally and know that your neck will hurt for a few weeks.

Hope this helps.

How is everyone else doing?  Ellen?

Susan Colorado

Hey Susan- Still hangin in there.  :)  Having more cervicogenic issues that surprised me, so thought about this particular thread a lot the last several days.  (as if Migraine wasn't bad enough by itself!)  Still happy with my decision, but I'm not a girl who closes doors behind me either.  My neuro suggested trying another block, but I declined... for now.  I hope this works for you and lasts a l-o-o-o-o-n-g time!!

Ellen

Hi Ellen,

How have you been?  Any better at all?  Someday there will be a cure for us....until then....we just have to do our best.  Like you said in an earlier post...This Too Shall Pass.

As for the rest of my story (it helps to talk to someone who's been through this), I am still on the SAME medications I was on a year ago (four meds for migraine prevention).  Well, except my doc switched out an antidepressant.  So even afer the RFA, I am still taking tons of meds.   My neurologist a month or so ago decided I was doiong well enough to try getting off of the zonegran, but the day after the appointment I had a week long string of bad headaches, so I never went down in dose - I didn't want to go off because if I was still having headaches - we wouldn't know if the migraines were due to coming of the med or due to something else.  So then a few days ago I thought I was doing well enough to try getting of of the zonegran, but then I ended up with a migraine that lasted 3 days.  Frustrating.  But I have faith that someday - I will get over this.

Ellen, I will pray for you, hope that doesn't offend you!  Let me know how you are.

Susan

Susan, I have been doing the same for you.  :) 

Our stories continue.  At least we're doing something about it...

Ellen

Hi Everyone.  I have been on the internet trying to find anything to help with disabling migraines.  Thank you Ellen for your posts.  I appreciate you sharing your experiences, because I feel sometimes that no one understands the terrible neck and head pain you go through with migraines.  I have had the nerve blocks, but they did not help. 

I have had migraines for 25 years, but around 8 years ago I could no longer hold down a job and had to go on disablity.  In the last 6 months I have been sick every day.  It is horrible. 

I have just changed neuro's because I felt my last one had given up on me.  I want to get the stimulator, but I'll have to see my new doctor several times before he understands all the things I have tried in the past to have some "downtime" from the pain. 

I have been to the Diamond Headache Hospital (for 3 weeks) in Chicago.  No real help there.  They put me on Mao Inhibitors and I gained 30 pounds and continued with migraines.  They were big on the DHE45 medication, but when I take it IV, it makes me "crazy". 

I've been to the Ford Headache clinic in Birmingham, AL.  I've had so many different neuro's I've lost count.  I know my neck is a big trigger for my migraines, but sometimes I have a migraine and my neck is not that bad.  I know after so many years about my triggers, but I still stay so confused the cause, the real cause for most of my migraines. 

It's hard on migraine sufferors, because we have the pain and we see how it effects the people we love.  Most of my family quit calling me or coming to see me.  They say they don't want to bother me.  I feel bad I cannot be with my family like I use to, but it's hard to be in pain, especially alone.  I chose not to have children because I didn't want to watch my child sick like I have been.  Migraines run on my mom's side.  My husband understands some days, but I watch him growing more and more sick of me being sick. 

I needed to talk to someone, so thanks for listening.  Thank you for everyone's posts.  I did learn some things and I could feel your pain.  Has anyone had the stimulator put in their neck?  I am thinking about having it done.  Thing is, I don't think it will help with the neck pain, but if it helps any with the migraines, it will be worth it.  I pray that everyone is pain free today.  Thanks!

Patty

Hi Patty, I'm so glad that my post has helped you.  Please, remember YOU ARE NOT ALONE! There are many *out there* who are going through the same symptoms and experiences you are.  It may not help you directly, but sometimes, just knowing I'm not alone helps to give me the patience I need to wind my way down the path to feeling better.  You still have many options too.  I wish you had better luck at the Headache Clinics you visited, but unfortunately, I found the same basic thing you did - they want to treat you pretty much based on their experience with other patients, and if you fall outside of that scope it's a long, hard haul.  I think some do give up.  Mine did too.  That's okay because, had I stuck with him I wouldn't be doing as well as I am now that I found someone who was open to thinking outside the box.  It took a lot of finding my own answers thru careful research, but it has been worth it.  My kids also suffer Migraine, but they are already better off than I was at their age because they are getting proper treatment.

Patty, hang in there.

My Neuro is again considering blocks and seeing a pain specialist.  I'm still hanging in there tho and making progress on my own.  I want that stimulator to be the last possible thing I go to.  Finding my deficiencies was key for me, and a reason I now suggest that you get your own levels checked if you're not having luck with conventional treatment.  Some of the meds we take deplete these levels and can cause issues all their own.  ick.

Hey Ellen,  I've never thought about deficiencies being a problem for migraines (and you can't sit back and wait for the doctor).  Now that I really think about it, a nurse told a friend of mine that Imitrex depletes anti-oxidents from your body (not sure of spelling:-),,,,and that could make you worse.  Thanks for the tip, I will have my blood checked.  I hope everything is going good for you.  Take care, Patty

My daughter has bounced from neurologist to neurologist.  She has been hospitalized twice this school year.  She is a Senior this year.  Talk about making the last year of high school hard instead of fun.  This does it.  She has had a daily headache for 125 days and at least 3 migraines a week.  They have tried all the medications out there, so far the only one that kind of works to help bring it down is the isomethetine. 

When we were in the hospital during Christmas break, she had nerve blocks done in her temples and eyebrows done.  They didn't work either.  So they did two procedures with the lidocaine and cortisone, diagonistic blocks done.  They worked.  Though it was short lived, they worked.  They didn't totally get rid of all the pain, but knocked it down far enough that they think RFA would be worth a try. 

I'm a medical assistant.  I wasn't nervous about it at all until over this last weekend.  She has it done in two stages.  C2-5 right side done Good Friday, then the C2-5 left side done 2 weeks later.  So the first procedure is about one month away and I'm starting to get nervous about it.  I have been told it will work, but as I read here it might not work. 

I'm afraid of making the wrong decision.  She is only 17, I would hate to damage the nerves and she have to live the rest of her life with this issue.  On the other hand, I'm tired of seeing her go through the pain every day.  Some days she can't even drive home from school.  A friend has to bring her home.  On those days she just walks in the door sobbing.  We have tried to make sure things in life don't change much, but that doesn't work all the time either.  She can't go to the club with her friends like she used to.  She has a hard time going to school most days, but gets there anyways.  Does anyone know of a teen going through the same thing?  Maybe they can talk to eachother.  Her friends state, "It's just a headache, take come motrin and get over it!" "What do you mean your head hurts, you look okay?". 

We both are tired of those comments.  She had to go through classes while in the hospital.  She read a story about spoons.  How many spoons do you have to function with?  Most of hers are used before she even gets to school in the morning.  So if anyone has any suggestions, please pass them on!!

Thanks,

Tina from Michigan

Tina,

Is your daughter's doctor a Migraine and headache specialist? It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

Teri

Yes, he is a world renowned Neurologist that specializes in Head and neck pain mostly migraines.  He runs several clinics.  There are two near where I live.  They are a great group of doctors, but they don't take insurance.  So it is all out of pocket, they submit the bills and your insurance company pay you back.  It's expensive, but well worth it if they find something that works!!  MHNI (Michigan Head and Neck Institute) is where we take her.  They know what they are doing, but I have some reservations.  I just want her to be healthy and happy again.  She has been miserable lately.  What a time to be in so much pain.  She can't work out, had to quit the high school soccer team, can't play in band anymore...ect.   

Oh Tina, I'm so sorry for your daughter's pain, and yours as a mom. I've been locked in an awful battle lately myself and surrounded by those who don't understand. It's normal for this kind of battle with pain to trigger depression and stress, and trigger more Migraine episodes as well. ugh. Round and round we go. As a mom, the pain of seeing your child in such pain is tremendous as well, and something not understood by many. This is really affecting your entire family.

You're doing the smart thing for her now. Educating yourself. You need to be sure and educate her as well. In the end, it's her who will have to live with what is happening to her no matter the choice. Kids don't make choices very well - that part of their brains aren't even formed completely at that age - but it is her body. What is right for one person may not be for another. Until they start making a much better crystal ball, I pray a lot and research more. There is no good answer yet, only the lesser of multiple evils.

I'm still not unhappy with my choice, but that was mine. I may even change my mind someday. I know RFA works for some. I just wanted people who are desperate enough to consider this treatment, to know that all things are not rosey. I underwent a procedure years ago, very different from RFA, but with far-reaching effects of which they weren't even fully aware at the time. I did it because I was told it was "completely safe", "easy", and would take away my problem. I trusted when I shouldn't have. I have to live with that every day of my life now, so I'm extra careful about making possibly permanent changes now.

I don't know if it's any help, but have you tried Dexamethasone or DepoMedrol and Prednisone?  Ergotamines?  Just a shot in the dark someone may have already mentioned to you.  It might not help long-term, but might get her over a bad stint and give them time to come up with something else better...  That's what I'm stuck with now.  I know there will be concequences, but I went into the treatment knowing it.  We'll see what happens...

Keeping you in my prayers....

Her case is slightly complicated.  She was diagnosed with complicated migraines with hemiplegia, and aura.  She can't take any beta blockers, because of her asthma.  On top of it all, she was given a medication in the hospital that gave her heart issues.  They backed off this medication because of it and then did this another 2 more times.  It drove me NUTS!  But I figured they knew better than I did.  Now the medication she is on for an abortive gives her heart palpations.  It's not a common reaction to the medication, but it 's worth it according to her.  It actually takes the migraine pain from a 5 out of 5 to a 2 or 3 out of 5.  So the doctors know what they are doing, just have to find the right cocktail for her.  But they are hoping that the RFA will work for her and get rid of the worst.  They she will be back to her normal migraines once or twice a month around her mences. 

I suffer from migraines as well, so I know how bad they can get.  I just feel bad for her because she is living with this pain on a daily basis for more than 120 days.  I get frustrated after day 1 when mine last a few days.  I honestly don't know how people actually do it.  She will get through it I'm sure of that.  Just not clear on when, yet!  But, she is a strong girl and will get through it!  She has put her college degree on hold.  She wanted to go away for college next year, well that isn't going to happen now.  She will be staying at home and go to community college for the first year (nothing wrong with that), then transfer into the Art Institute her Sophomore year.  I'm just a little concerned about that school for the simple fact that the one near us doesn't have the major she wants.  She will have to go to IL, TX, FL, PA, or CA.  Too far away for me to get to her if something goes wrong!

You all have been added to our prayer list!  It is a rough thing to go through!

Hi Tina from Wisconsin,

I had an RFA done in late August 2008.  The purpose was to block the nerves from sending pain signals from the migraines.  I had it done on, I think C2 and C3, and maybe C1, on both sides of the back of neck.  The procedure itself was not painful.  However, for a few weeks after, my neck was very sore, felt like hair being pulled out but way worse.  That pain triggered more migraines until the nerves calmed down and healed - about 4-5 weeks later. 

I would say that if you have a surgeon who is experienced in doing RFAs and you feel confident with him, then I would suggest trying the procedure.  For me, it was very difficult to tell if it worked .  Here's why.  Right after the RFA surgery, I went through some major emotional turmoil, my marriage was falling apart.  My dog was diagnosed with cancer.  So I believe that no surgery or even medication can prevent migraines due to strong chronic emotional triggers that I was experiencing for several months after the procedure.  I was an emotional wreck.  But looking back on how I feel now, I am doing much much better.  My migraines are less severe, and the abortive meds actually work better than they did prior to the procedure.  I'm only getting severe migraines 1 or 2 days a week which normally can be handled with Imitrex and don't interfere with my life nearly as much as they did before.  Prior, I was getting migraines/tension headaches/mixed on a daily basis.  On the couch almost every day.

Has your daughter tried physical therapy with a therapist who does neuromuscular release?  I have found some PTs that really know what they are doing and know how to release the tension in my head, neck, shoulders.  If  you decide to go this route, try to find a PT who does hands on therapy rather than a PT who just emphasized exercises.   You do need to do exercises, but the hands-on work is what relieves the pain.  I was told that a lot of times migraine pain originates in the neck.  I know a lot of time mine does, and if I can get my neck stabilized and get some muscle tension out of my neck and shoulders, the migraines are greatly reduced. 

 And an occassional massage from a reputable practitioner always helps, albeit for a short period.

I too was once a patient at Diamond Headache Clinic, for years.  But what I found there was that they push a lot of meds and unless you live close by, you really won't get the treatment you need.  My own personal opinion, take it or leave it.

Hope I've helped.  Let me know if you go through with the RFA.

Susan from Colorado

Patty,

I read your note, it is so great knowing that I am not alone out here.  I have suffered with cluster/migraines since a horrendous auto accident 37 years ago.  There is no stone left unturned trying to find relief, nothing I haven't tried.

I was on prozac for 27 years for chronic pain, I gained 92 pounds.  I had also been prescribed so many pain meds I wasn't even "here" anymore.... but, that just kept me quiet and the pain was still there.... still under everything.  Two years ago my husband (who was had never been sick in his life) was diagnosed with prostate cancer and was scheduled for surgery.  Following the surgery, he began to have heart problems.... I was not THERE for him.... I was not there for myself.  At that time, I realized that I had better take back control of my life.  I stopped taking the prozac and all the pills I was on... it was hell, but I did it.  Two years later, I have lost 93 pounds and am pretty healthy...... of course, the headaches never got better.  Not a day went by without pain... it was and still is my constant companion.

8 weeks ago I went to the U of U pain clinic and had an ablation to four areas in my spine (below the skull).  My headaches have improved so much..... it is so bearable now.   BUT, in the process of RFN, the Doctor damaged the occipital nerve.  Now, I have unbearable pain at the base of my skull.... it is like being stabbed in the neck over and over, day and night.  Now, they just want to shut me up and put me back on pain medications...... I am so depressed and feel so hopeless, no one ever understands the pain we are in.... it is impossible for them to know.  So, I just try and stay to myself.  My husband is better, but he is getting really impatient with me, he feels helpless.

I would love to keep in touch with you and others... 

Thank you so much for sharing.  Happygma

It is so comforting to know that there are people like me out there.  Pain is the most lonely feeling in the world.

I have suffered chronic cluster/migraine brought on by a horrifit auto accident 37 years ago.  I fractured many bones in my body, from tmjs to sacriliac.  I crushed all the vertabrae in my neck which has developed arthritis as well.

After suffering and seeking every manner or relief, I finally found a Doctor that specialized in RFN.  8 weeks ago I had ablation in 4 spots.  My headaches have actually gotten better, but the Doctor subsequently damaged the occipital nerve on the left side.  I am having horrible, unbearable shooting, burning. stabbing pain at the base of my skull.  It actually is like I am being stabbed over and over again.  I am disabled by it.  They have done occipital nerve blocks... twice with cortizone and lidocaine and twice with only lidocaine.  The first cortizone block took the hot poker pain away but it only lasted less than a week.  Nothing has worked since.

Now, they just want me to take pain meds..... at one point (about 2 years ago) I was on so many pain meds it almost killed me.  It took a realization that I still hurt, I just was not "there".  I don't want to take pain meds.  I wouldn't care if they drilled into my skull.... I am desperate for relief.  Yeah... my headaches are better, but now I am left with being stabbed every few seconds.  It is hard to be around people, my husband is just about out of patience with me.  I feel so alone and helpless.

I would love to be added to any communication there is....  Anyone???

To Happygma:

I will include you in my prayers. 

 I would have a friend or family member go to your doctor with you and demand a different care plan other than pain meds.  It sounds like the doctor messed up your nerve; he should find a way to fix it.  Ask the doctor if any other patients have experiences what you have and what helped them.  Can they go in and do another ablation?  Can you see a pain specialist?

Does ice help relieve the pain?

How about sending a message to the people at this website and tell them you are really desperate - or have a family member or friend be and advocate for you and have them write an e-mail or make some phone calls.  Maybe the more people who read about your situation, the more likely you'll find a solution....

I don't know if this helps, but I know what it is like to be in pain day after day, year after year.....

Is there a local support group you can go to just to help you emotionally?

I wish I could help more...

Susan in Colorado

To Happygma:

Oh, I am so sorry you're dealing with this too.  Know that I'll be keeping you in my prayers too. 

I wish I had something helpful to say, but I haven't had the procedure as I was afraid of getting worse.  The blocks themselves caused shooting pain I found hard to deal with, and didn't help the situation in the end.  Getting worse just wasn't an option. 

I know that blocks can be helpful, but it may take more than one.  I will say that I'm so glad they're at least interested in treating your pain.  Not what you want I know, but to leave this untreated along with everything else is.... unthinkable... in my mind anyway.  You have to choose what is best for you tho.  Don't be pushed into something you don't want, okay?

Living life as we do is really hard.  As you say, it's lonely.  There are so many other words - frustrating, chaotic - well, you know just what I mean.

You may feel better as the nerve begins to regenerate.  That is my hope for you.  Some people I've talked with feel better, others not. One friend with Dystonia had a muscle and nerve cut to relieve her pulling, and it resulted in permanent numbness.  This is a very drastic thing to think of, but I don't want you thinking you are at the end of the line and the situation is hopeless.  We have to have hope.  I do anyway.  I cling to it like I'm coated in velcro.

Know you're not alone, and we all care about you and how you're feeling.  I hope you'll check back and let us know how you're doing.  What you have to say could help so many others.  I would love to keep in touch and keep you in my prayers.