Occipital Neuralgia Online Support Group

Hello all! I also had ablations on C2, C3, and C4. They were all done 7 weeks ago last Thursday. Unfortunately my headaches have remained the same, as well as I believe almost worse. The pain in my neck from the ablations was unbelievable the first few weeks, and still to the day is extremely tender and sore. I am praying that gets better over time. I am now planning nerve decompression surgery with Dr. Ducic. He comes highly recommended by others in the group. The way he works is that you fill out a registration form and send him all your records and a fee. He then will respond to you whether or not you are a candidate for his surgery. He personally emailed me very quickly and agreed that he felt his surgery would help. I was so scared because I had had the ablations that he would say no (from research many doctors will not do surgery if you have had them). He did say due to my ablations surgery may have to be altered a little. I am now waiting for my insurance to approve everything and then his staff (who have been extremely kind and helpful) will call me with an appointment. I am so hopeful that he is my answer to these dreadful headaches! I can finally see the light at the end of the tunnel! Praying all of you are also headache free soon as well!

good for u. I have just heard from ducic too and will be going for the second surgery when bcbs approves. PS dont wait for his office to approve u get the codes and call ur insurance urself u will save alot of time and know when it gets done. I went thru that the first time any questions pm me or migraine occipital neuralgia on fb Im lolita

My Husband had a fall in 5/11 and suffers from O.N. because of the fall. He can not have aggressive PT or chiro appts because of an occlussion in the back of his head. He's had numerous nerve blocks and a medial branch block. Now his dr wants him to have a radiofrequency neurotomy (radiofrequency ablation). I'm looking for anyone that has ON or knows anything about treating it. I'm also a firm believer in prayer and will pray for anyone with this awful painful condition.

So sorry just seeing your post mamalu. I am going to PM you because I am having a very difficult time with the office and getting approval quickly!

Bresco, so sorry to hear about your husband. It breaks my heart to hear of all of these stories about those suffering from ON. It is so painful and so frustrating. I was just talking to my husband tonight how the word 'headache' has a whole new meaning. I also suffer ON due to a fall in 2005. I am also a strong believer in the power of prayer and know that our Lord is the Great Physician and CAN heal us! I lift up those suffering and will add your husband to my prayer list.

I had 4 nerve blocks in the office (2 done by neuro, 2 done by anesth. under xray) and actually never got numb from the procedure or had relief. Has your husband gotten any relief from those? They either never hit 'the right spot' or I have abnormal branching of the nerves. I then had RF of C2, C3, and C4. I have heard of that helping some, but I will just tell you from my experience that if I had to do it over I would go straight to the decompression surgery (I am praying that is my answer). The RF ablations I feel only left my head worse, and the back of my head is still extremely tender to even touch and I am exactly 8 weeks post ablations today. So now I have extreme headaches more frequently and an extremely sore back of my head. Again, I know everyone is different, just want to let you know my experience. Just from this group there are many success stories of decompression. I am a little upset that 2 neuro and one pain management anes at Duke never discussed this option with me and I only found out about it through my own research. Please feel free to PM me if you have any questions. Know that we are all in this together and are here for you. Praying for relief for your husband and answers very soon!

Bresco - I was offered the ablations by my neurosurgeon and pain doc but said no because everything I read said that if you had the decompression surgery after ablations it is less like to be successful because the nerve has already been damaged from the ablation. I had the decompression surgery March 27th and so far it's been 99% successful! I should probably say 100% but I don't want to jinx it! I had 5 nerve blocks and facet joint blocks last fall and one round of Botox in January. The blocks lasted 4-9 days and the Botox gave me just over 2 weeks of complete relief. The day after my surgery my plastic surgeon told me there's no way any block or Botox would ever have given me any long-lasting relief because the muscle causing the issue was so big and deep. I'm

So glad none of the doctors argued with me about NOT doing the ablations! Good luck in your search for relief - I know it's a tough journey but there are lots of people here that are supportive and willing to help!!

Greetings, fellow members! I'm a newbie with a recently diagnosed case of ON and just had facet joint anesthetic injections yesterday. This confirmed the diagnosis and left me with hope that a treatment is near. [Man, I felt good for four hours!]

The recommended treatment is the RF ablation (or what the pain specialist is calling cervical facet radio frequency neurotomy). I'm not getting a sense this has been successful for others, unless those who are now pain free just aren't posting the success stories. Am I wrong?

Is the reluctance to do this procedure just related to whether decompression surgery can be done later?

Thanks for your patience as I get up to speed on this.

P

PJH - my reclutance was the info I had read about lowering the surgery success rate. I've also read many posts about it just causing more pain. And that was something my pain management doc and I talked about. He told me when the nerves start to regenerate after the ablation they tend to be really angry. I had no desire for more pain than I was already having! Keep researching until you feel comfortable about what you feel will work best for you. There are lots of people here that can help answer your questions.

pjhcali,welcome to this group. You will find many here who share your pain and have been thru many different treatments. I did research on that and the stimulator and I chose neither. They werent for me as I wanted to get to the bottom of this pain and whatever I could do to make it stop. I had nerve decompression surgery in dec. It did eliminate the burning,stabbing,bowling ball feeling on my neck,however migraines remain. I knew at the start dr said 4 surgeries are available and so we started at #1. I will b having the next one as soon as I get insurance approval. Any questions just ask

i could write a book on this! i recently had a RF on my c2-c3 and not only was it extremely painful but,almost 3 weeks later,extremely unsuccessful. this was the last in a long line of treatments at mt sinai hospital in nyc,a large respectable medical establishment where i have a team working on my headaches since last year. i have had nerve blocks,RF's in several different areas of my neck,none working. i have been on pain meds from suma pro injections to topiramate to oxygen and more.i am at my wits end and since one of the meds is used for people with severe seizures, it leaves me loxy and somewhat dopey. not a way to live. my advice is don't have the ablation- they don't work!

schustermom , thanks for your post,sorry you have not found relief.Dont give up. Have you looked into the decompression surgery?