I’ve not had success with the procedures my headache neurologist has provided, except for his acute care and a 1 week and 5 day complete relief from migraines after trigger point injections.
My dr. Said I need to try Botox “his way” (I’ve had it for three years at another neuro’s office with no success). If that doesn’t work, he’s going to send me to a plastic surgeon for radio frequency ablation and/or nerve decompression surgery.
Has anyone had these procedures? My migraines seem to be mainly triggered by moving my neck too much (turning to the side to look out the car window for three to five minutes will give me a migraine). The pain starts at the base of my head in the occipital area and spreads around to the sides of my head. At other times, I will have pain originating in my temples and areas on the side close to there, and then my head will hurt anywhere something touches it. So it’s like I have two separate types of migraines.
I’m looking to hear from anyone who has similar experiences and had one or both of these procedures done. I’ve read a lot of mixed information in the scientific articles on these procedures, and I’ve read little of what the recovery from these procedures is like. The only thing I’ve heard is from my dr, who said my neck would be sore for a few days after radio frequency ablation.
Thanks for your question, let me see what I can do to help. In my honest opinion, before I had invasive either procedure, I would seek out the help of an expert, a migraine/headache doctor. These doctor are different from neurologists because they are board certified in headache medicine, whereas all neurologists are not. Neurologists are fine doctors but have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, epilepsy, stroke, Parkinson’s and others. Migraine and headache experts are just that, experts who treat one condition, migraine and headache all day, every day. Let me share information with you on how these doctors are so special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.
Thank you Nancy. I am under the care of a migraine neurologist. All he does is migraines. He even has patient rooms for people trying to break their migraines through drug therapy. He’s been very helpful and tried lots of procedures. He only recommended surgery after trying trigger point injections, nerve blocks, preventative medicine, and an epidural spinal patch. Trust me, I wouldn’t be letting just any old doctor tinkering in my head.
I’ve had radio frequency ablation. Last year by a pain management doctor. It did nothing at all. Talking with other doctors, I have had great short term success with facet injections so the ablation should have helped. Turns out it seems it is very difficult to find the occipital nerve as it does not show up on the screen he uses to guide the needle. Just a big blank space. Nerves don’t show like bones.
I remember him asking me if “that” was the place. I am now under a neurosurgeon for my facet injections and am waiting to be scheduled for an ablation by his office. It’s not bad, no worse than the facet injections. Prayers to you. I’m also very very close to giving serious consideration to the nerve decompression surgery. I’ve had enough!
I have not had radio frequency ablation, but I am moving in that direction. I have worked with the Michigan Head Pain and Neurological Institute for many years, until two years ago when I shifted to a local neurologist who specializes in migraines. Most of my time with MHNI involved a rotation of every preventative medication and combination of medications. Toward the end of my active relationship with MHNI I went through their outpatient IV infusion program as well as their inpatient program. Neither brought about any long lasting relief. The last treatments I received through MHNI were a series of three bilateral C2 nerve blocks. Each of these brought about complete relief from migraine for one to two full days. This does not sound like much, but for me (my migraines are daily, literally every day) that was significant. The physician at MHNI wanted to move forward with RFA, as the three nerve blocks showed that he had “hit the spot” so to speak. Unfortunately my health insurance at the time, Blue Cross and Blue Shield of Michigan, repeatedly denied the procedure. Paying 100% out-of-pocket was not feasible. So, I moved from MHNI to working with the local neurologist, who had been performing Botox injections throughout the last year or so I was working with MHNI. Additionally, I also worked with an acupuncturist as well as a physical therapist who does myofascial release.
The last several weeks have brought about a painful increase in the intensity and duration of my migraines. I, thankfully, just got another round of Botox injections last week. I am hopeful that the Botox will have some positive impact.
Also along the way my health insurance has changed to Priority Health. I am currently waiting on a call back from the MHNI team member that handles all the insurance pre-authorizations for procedures, including RFA. At our last conversation she had indicated that I should call if and when I was ready to move on the RFA.
So, although I cannot speak of having actually had RFA I am definitely ready to proceed with the procedure if I can get my health insurance to approve it. In fact, even if they do not I may try to work out some kind of payment arrangements with MHNI and Chelsea Hospital. I just cannot stand the daily migraines any longer!
Speaking of nerve decompression surgery… I brought this up with my neurologist last week during my visit for the Botox injections. We talked about the procedure a bit. She had not heard much of the procedure. None of her migraine patients had this surgical procedure. She mentioned attending CME sessions, lectures and classes where treatments and procedures were discussed. She said that nerve decompression had not been high on any list of such discussed treatments. I am not sure how much weight, if any, that carries.
As the visit came to an end my neurologist suggested I pursue the RFA and, if that shows results, moving toward a stim-implant. She seemed to believe this would be the best path considering the chronic nature of my migraines and the long history I have of failed treatments.
So, my plan is to try and get the RFA. From there I will decide what makes sense next. In the interim, I am hoping that the Botox injections will ease the duration and intensity of the migraines a bit.
I will definitely post here as I move down this path!
I see this post is a few months old but I thought I’d answer anyway, in case it helps.
Personally, I’m all for surgical options to treat pain. For me they have been way more successful than all the heavy neurological drugs thrown at me as well as more “conventional” migraine treatments. Most procedures are minimally invasive so to me it’s always been worth the risk.
I got a nerve stimulator implanted in 2009 which has given me great relief. Between the stimulator and regular botox injections, my pain has been reduced by 80%. However I also have separate issues with my neck. i’ve been using facet blocks and RFA to treat that for the last several years. The RFA is great. It’s a simple procedure that has virtually no recovery time and instant relief. The nerves do grow back so you have to have it done every 6 months or so but I’ve found it to be worth it.
I have no personal experience with nerve decompression but I know several people who have had good results from it and I can get you an email address or two if you’d like.
I just had RFA by my neurosurgeon about 10 days ago. About 2-1/2 weeks before that I had Botox from my neurologist. About a week after Botox I noticed that my neck was hurting even more than normal and wanted to “flop” forward unless I was laying back, in bed or reclined. Holding my head up became more and more difficult and was really taxing my neck. I realized that the Botox was relaxing my neck muscles causing the problem. I called my neurologist (new one 1st time getting Botox there) and her office manager called back saying “sorry, nothing we can do. Will have to modify placement of Botox in neck next time.” I’ve been getting Botox for 2 years and this is the first time I have had this problem. I understand it can happen. I bought a soft collar to support my head. So the RFA is still pretty sore 10 days out. I am icing the back of my head,
So I have not had any occipital headaches since the procedure. He did 4 places. My neck is a total mess, C2-3 is congenitally fused, and 2 bulging discs below that. c4 and c6, I think. neurosurgeon is talking fusing them to add more stability? Will have to think about that a while. I have had migraines in the temple, behind the eye, face and nose region. Funny cause no pain in the back of my head. Very different for me. I think the RFA is a success if only the Botox had not messed with my neck the way it did. Waiting for it to wear off and see what I have. I know that I have more than one thing going on to trigger migraines as well but if RFA handles the occipital area that will be a hugh plus.
Hello to whomever reads this. I had R.F. ablation approximately 2 months ago. The procedure didn’t hurt at all. It was an outpatient procedure. The whole procedure I was under anesthesia. After the procedure my neck and head hurt to the touch. I know that area had no feeling but it still hurt in a weird way. It was like a really bad sunburn. As time passes I can feel the area getting smaller and my migraines are coming on more frequently and intense of course. The time free from the constant pain was worth it. I will do it again. I hope this post helps someone. Please have a great day & God Bless you.
Looking back over this I see how much time has passed, since I was looking at RFA as a possible treatment option. As it turns out my insurance at the time would not approve RFA. I am okay with this as the nerve blocks I was getting seem to cause neck pain that I had not previously experienced. Historically, and to this day, my migraines originate in the temples and move up and over the top of my skull. The pain never moves lower than the base of my skull. This is not to say that the origination point or path of the migraine could not involve the neck. What I do know is that my “gut” told me RFA may not be the way to go.
Although it has taken some time, I am now on a path toward a Neuro-stim implant. The first step is an external trial, which is about five weeks away (as long as the insurance approves). If the external trial works the next step will be the permanent implant (tentatively scheduled for a month after the trial).
I think the bottom line is two-fold… First, it is important to partner with healthcare providers who specialize in migraine and/or chronic pain management (in the case of the Neuro-stim). Secondly, it is important to maintain hope. No matter how many treatments one has tried, from medication to nerve blocks to Botox, there is likely to be something else to explore. I do not always keep this motto in mind as much as I should, but I try to… “Something has got to break and it is not going to be me!” I refuse to give up or give in to the daily pain of chronic migraine!!!
I just want to give an update on my last post. I had R. F. about two and a half months ago. I still have yet to experience a mind shattering full blown migraine. That is on my scale of migraines. Your threshold with pain may be more or less. I have had so many with aura and without, nausea, vomiting and almost complete blindness that my threshold is very high. Anyway, I just wanted to post because I have been having pains in different parts of my head besides the normal everyday pain. My migraines for the past two years have mainly been focused in two areas, above my ears and the entire occipital area around the base of my skull. It’s as though the R.F. has made the other nerves in my head more sensitive. I’m not sure what nerves my pain management doctor did the R.F. on. I’m almost positive it was c2, and c3. This whole procedure was rushed on my behalf because I was in so much pain at the time. I had permanent pain that would not go away even with medication and it was triggering my migraines. I joke with others who have not experienced a migraine by telling them some kind of rude examples normally but I told my pain management doctor who did the surgery that he could stick the needle in my eye if he thought it would make me feel better. I was scheduled to get more blocks but my insurance carrier would not pay for it. My doctor said the next step would be R.F. if the blocks didn’t work so I figured since I was paying for the surgery out of my pocket then I would just go the next step first. I’m not upset or complaining whatsoever. I’m not trying to endorse any type of surgery or medication. I just want to share my experience so others who are thinking about R.F. can do an accurate evaluation. I personally have a high threshold for pain. I have also been looking at the neuro stems. I TOO WILL NOT GIVE UP. I was taught to be my brothers keeper. We must help each other in whatever way we can. I find solace reading posts on this site even when they don’t pertain to my circumstances. The moderators on this site can actually relate to the pain you suffer. God bless you and give you strength.
I’ve had neurostimulators since 2003 and have worked wonderfully. I was supposed to have the stimulator replaced last year since the previous one was about to expire. United Healthcare would not approve the surgery and I was outta luck.
I tried Botox in July of 2015 after pain 24/7 since January and I had relief. It lasted only about 9 weeks and every subsequent Botox treatment I’ve had since then has not produced any results.
Decided to try RFA in either February or March of this year. As my doctor prepared me, it got worse before it got better. By the time I got home from the doctor’s office, I was in much more pain than I was earlier. But I did start feeling better the next day or two. But I only had about 6 days of relief before it started getting worse again. So we tried it again in April and this time they amped up the heat and even held ice packs on my head as they were doing the treatment. This time, there was no pain after I got home from the procedure and I was working the second I got home from the doctor. Just as the first time, I had relief before it started getting worse again but this time it was after 9 days.
Since then and the 2.5 months that have followed, it seems to have settled in a bit. I still have pain at all times, but not as bad as it was the last year and a half since my stimulator stopped working. I’m back in the office every day and having a normal social life.
RFA hasn’t worked out as well as the stimulators have, but if this is the best I can get moving forward, I can deal with it.