Hello,
This is my first post on this site although I have been a member for several months. I discovered this site by googling “occipital neuralgia support groups" last November. I was at a breaking point, nothing I had tried had relieved the chronic pain in the back of my head and neck for the last 5 years and I had accepted that was the way my life would always be. At 26 years old this is a depressing notion. I came here only looking to talk to people who understand what I was going through, but instead I learned of the ON decompression surgery here. Something I had never heard of after all the doctors and treatments I’ve had. Here is a little background for you:
I have been in 5 motor vehicle accidents over the last 10 years and a work comp accident January 2011 resulting in yet another sprain injury to my neck (c-2 c-3). But no accrual pathology has been noted on my CT scans over the years other then spondylosis and narrowing of my disk spaces. I have also had a head CT scan which was also normal. I endured chronic pain 24/7 and over the last year before my surgery I was getting migraines at least 15 days out of the month. It was becoming more and more severe as time goes by.
I had tried almost every treatment option for my condition under the sun, including: 3 rounds of physical therapy, countless visits to chiropractors, massage therapy including myofacial release. Yoga, biofeedback therapy and I saw a psychologist every week that specializes in chronic pain and she helps me cope with my depression and anxiety from everything I had to endure. I’ve had multiple steroid injections in my c-spine, tried diet changes, and 2 radiofrequency ablations of the occipital nerves which failed. Every time I received a lidocaine injection in my occipital nerves however I immediately got significant pain relief but it only last 1-2 weeks and became less and less effective over time. I used ice packs every day several times a day. I’ve been on several pain meds including vicodin and oxycontin which I successfully got off after 3 years when I was tired of the side effects and feeling sick) and transitioned to Suboxone, Baclofen and tramodol. They only took the edge off. I had trouble sleeping and woke up multiple times at night in pain. I was running out of options, My Pain specialist, suggested an occipital nerve stimulator but I didn’t think this is the right solution and my insurance wont pay for it.
My chromic pain and headaches had affected every aspect of my life, physically, mentally and emotionally. I have lost relationships, friends, and most recently my job as a medical assistant because it was affecting my work performance. I became depressed and isolated from the world I couldn’t live a full quality of life. It was at this point back in October 2011 that I contacted Dr. Ziv Peled in sanfranciso. He is the closest surgeon I could find to Portland, OR. We arranged for a consult and I took a day flight on Nov 15, 2011. After a very professional and detailed exam and conversation going step by step through my history, he decided I was a good candidate for ONS. He wanted to do a botox injection in both my Right greater ON and the Right lesser ON to confirm a positive treatment. I agreed and I had immediate pain relief from the lidocaine but the botox would kick in after a few days gave me about 50% relief. That was enough in Dr. Peled’s opinion to perform the surgery. Dr. Peled’s office does bill your insurance for you but because of the various outcomes from what all the insurance companies covers for this procedure, he requires his fee paid in full prior to the surgery date. This does not include the hospital fees, anesthesia labs, est. that’s all billed separately. And I was able to get reimbursed from my ins for most of the 60% of the cost later.
The surgery minimally invasive. A small section of my hair in the back of my head had to be shaved for the incision maybe 1in by 3 in. The incision was made vertically up the middle of the back of my head from the base of my scull about 3 inches. Dr. Peled removed scar tissue and arteries entrapping the GON and small ON. Another diagonal incision was made on the right side of my neck just behind and below my right ear to decompress the lesser ON. No drainage tubes were used. The site was closed and seri strips placed over the wound. I woke in the recovery room in minimal pain, still numb. I was groggy, hungry and thirsty. Dr. Peled came in to see me and I asked him if I really needed the surgery and he said yes, very bad that all three ON’s were severely compressed and that he removed a lot of scar tissue causing the problem.
When the numbing wore off I was in acute pain. I’m not going to lie it sucked those first 2-3 weeks. I had to take a large amount of pain meds for the first 2 months. Slowly things calmed down, I was feeling less and less stabbing pain in the back of my head, and right side of my neck.
After about 2 months I weaned off the pain meds and now I only take tramodol when I need it. At 6 months post OP I’m feeling like a new person. The chronic pain is gone and I only get discomfort that comes and goes. Although I do still get true migraines a couple times a week it’s manageable through medication, and I had these prior to the accident so I do not think these are related to the ON.
I am forever grateful for this web site and the posts that you all have provided as a road map to my salvation from pain. With out it, I would not have fulfilled my dream to move to Maui and start a new life.
Please feel free to contact me with any questions that you may have.
Thanks,
-Tricia
