Occipital Neuralgia Online Support Group

I had a bilateral RF done for the minor occipital nerve back at the end of October 2011. Ever since then the area at the base of the skull and the top of the neck has been giving me fits. This area never was numb like the doc said it would be and the "burning" sensations was really instense. I also developed some severe muscle spasms that effected sensations on my face. It created some burning on my face. It is now April 2012 and my neck feels like someone just hit it with a baseball bat. When I go back to the doc who did the injection he says is that this complication has never happened to him. He infers that I must have a psycological issue. I got a MRI and fortunately there was nothing serious but the nuerologist seems to think that the occipital nerve is really irritated and is getting all of the muscles in a uproar. Does anybody have any similar stories or advise? I love to be very active but find it very hard to enjoy each activity due to the constant pain that I am in. I would trade the headaches that I was having before the RF at anytime.

Post edited by: fourteener, at: 03/31/2012 10:20 PM

Fourteener, I am just so sorry to hear this. While I hate so much that you are going through this, it seems to help a bit knowing that others can relate to what we are going through. I too had nerve ablations for occipital neuralgia of C2, C3, C4. I am about 7 weeks out. I am just now able to really brush my hair without excruciating pain. It was extremely tender to the touch. It is still very 'itchy' if this makes sense..like under the numbness where u can't reach. And unfortunately, I am still having the headaches. If I could do it again, I would certainly skip the ablations and go directly to the nerve decompression surgery that alot of people on here talk about. My muscles in my right shoulder (i am thankfully only experiencing headaches on my right side) stay so tight and achy too. It seems to be creeping down my back now as well. I am looking into seeing Dr. Ivan Duric in Georgetown to hopefully have the decompression surgery. He has to review my records and see if I am a candidate. You may want to look into him as well. I pray that you and so many others suffering from ON find relief soon. Hang in there!

Thanks so much for getting back with me. You are right, in that knowing that others are going thru similar experiences does help. I know what you mean when you describe the "itchiness". I feel for you when you cannot get to the itch. One thing that really has helped me are ice compresses as well as putting pressure on the trigger points along the base of the skull and the top of the neck. I do this by laying on a tennis ball that is positioned where the muscles seem most tight. This also helps with the soreness in my back. Also, my son is a doc and he recommended that I try nuerotin as well as baclofen (muscle relaxant). Both meds are non-narcotic and have helped quite a bit even though both meds can make a person pretty drowsy. Based on soem of the reading that I have done, it appears that the RF causes the muscles to go into spasm which compresses the nerves which cause the burning and itching sensations. Sometimes the muscles get so tight the I can barely hold my head up. The pain and soreness, like you, extends down my back. I just hope that what the doc did is not permanent and I will have to deal with this for the rest of my life. It really angers me that my doc told me that there were very little side effects with this procedure. I guess he needed to pay for his boat!!I hope a pray that the effects that you are experiencing with lesses soon. Thanks again!!

Did you have the facet area ablated or the ganglion root?

I had the C2 ganglion root rf ablated and did not experience that. However, it has regenerated and I'm in a ton of pain.....

sorry...

Where is the pain and what kind of pain is it? I had it ablated but the ablation was not done right based on the information that I have researched. The area in the back of the head never really went numb. The pain was horrific and the resulting parathesia wrapped around the front of the face and around the ears. When I asked the doc about it, all he said was that he had never had something like this happen in his 20 years of practice. I think that he was inferring that I was making this up. Fortunately I am with a former partner of his and he has diagnosed me with Occipital Nueritus and gave me a nerve block of the Occipital Nerve which has helped alot. He also does pulsed RFs which do not leave the burning sensation in the neck. I hope your pain gets better.

Post edited by: fourteener, at: 04/08/2012 09:13 PM

I did not have the ablation or rf but did have the decompression by ducic. I can say it has gotten rid of the horrific burning and stabbing pain. I still have migraines I just heard from dr and he said I should get the second surgery done where he takes out all the nerves in the back of the head. I am always here for questions or in facebook @ occipital neuralgia

Dear fourteener, I spent several years at Duke and had rf's done and they made me worse. It was horrible. went to johns hopkins where got diagnosed with on and have since had decompression surgery at c2 and botox at front of head. both have helped a lot. but still lots of pain at top of head and probably looking at decompression surgery of greater occipital nerve. what caused your on? I was in terrible car accident.hit from behind at 60 mph. sincerely,Kathryn armstrong on here as wellskat

thanks for your input. I am 5 months out after the RF was done laast Oct. I went to another doc since the one that did the RF basically told me that my sensations were in my head. DUH!! I knew the other doc and knew that he did the same type of work. He spent time with me and explained what I was experiencing. He then proceeded with a block of the Occipital nerve which took away the pain over my head and then did some trigger point injections which took away the burning sensation in the back of my head. Unfortunately the triger point injec provided only temp relief but at least now I know that it is the muscles that are causing the burn. He said that the nerve is still irritated and is in the process of growing back. Thanks for the info regarding the decompression surgery. Do you have a website where I can research this? Even though I see improvement I amd definitely worse off than before the RF. I would never recommend this procedure to anyone.

Dr. Blake: http://www.memorialhermann.org/physiciansearchmh/ PhysicianDetail.aspx?provid=212634

Dr. Perry: http://chronicdailyheadache.com/

Dr. Ducic: http://www.drducicplasticsurgery.com/Ducic_Plastic_Surgery/ Dr._Ducic.html

Dr. Brown: http://neurosurgery.ucsd.edu/justin-brown-md/

Dr. Branch: http://migrainereliefatlast.com/

Dr. Guyuron: http://drbahmanguyuron.com/

not sure .looks like i havent responded back to u. very sorry. have appt with dr. ducic in georgetown .in dc. he does nerve decompression surgery. not sure what he will say. have pain everywhere. have heard he cuts nerves sometimes but am a little afraid of that. there are suppose to be some awesome drs in texas- dr.carlton perry and dr. pamela blake. where do u live? what caused your pain? mine was a car accident.never hardly had a headache in my life and now for 2 1/2 yrs have constant migraines