Hello there! I've been on this website for quite some time, after being diagnosed with Geniculate Neuralgia several months ago. My symptoms were a constant, terrible stabbing in my right ear that occasionally radiating to the top of mu head and set off migraines. This had been going on for two and a half years so I was thrilled to have a diagnosis and a way to treat it. I had an unsuccessful MVD surgery for on July 9. I healed decently, but the pain has not lessened at all. My neurosurgeon suggested I get an occipital nerve block. I was under the impression this was to help with the pain of GN, but when I arrived to his office he said he believed I had superimposed Occipital Neuralgia along with Geniculate Neuralgia. He also informed me the injection would do nothing for my GN pain. I should have left right then, but I like my neurosurgeon and thought maybe he had some new insight, although I do not have any symptoms of Occipital Neuralgia.
The shot did not work. Ever since he gave me it to me my pain has increased immensely. Today I can't even form coherent sentences due to the pain. There is pain radiating around the shot of the injection, shooting down my neck. Now I not only have the stabbing pain in my ear, but the same pain is occurring under my ear as well. When I called and asked what could be done they said I'd have to talk to my regular neurologist about increasing Tegretol or some other medication.
I am so scared and hurting. I was in enough pain before the injection. It staggers my imagination that my pain could increase this much, and knowing how badly I am hurting my neurosurgeon and his nurse are not offering any options, suggestions for relief. I want to scream out loud, but that would most likely hurt too.
So, if any of you have been kind enough to read this much, my primary question is if you have had an occipital nerve block that increased your pain instead of relieving it? If so, did anything help? I'm trying ice, essential oils, but nothing seems to work. If you have any advice or similar stories I would be very glad to hear them. I knew how to live with the intense, never ending pain of GN, but this is a whole different monster. Please help.
How long ago was this injection? I have had rhizotomy for cervical pain upper levels and sometimes it would take a couple of months for pain from the injection to settle down. And yes, I too, have GN although mine is atypical. The injections were intended to help me with my neck pain but my neuro thought I might have ON, also getting botox cervical and in my scalp. Meds have not helped me but in the long run, the neck does feel better. All my docs were assuming my neck was causing the GN and also ATN and treated my neck. I am still getting pins and needles sensations at the base of my scalp from the last injection, achy, but for almost 6 weeks it was horrible pain, this is a normal reaction to a block, it gets the nerves all riled up but then it is suppose to settle down. Is there a risk of increasing your pain, yes, so I do hope your reaction subsides. Sharon
Thank you so much for sharing this with me. All my neurosurgeon said was that my head would be numb for a few weeks to a few months, and after almost three years of this wretched daily pain, that was something that sounded wonderful. When I called to ask the nurse why I hurt so much more she did not offer any ideas. I really appreciate you telling me how you feel. My next and final option would be a rhizotomy. Would you suggest it? It scares me to death. I had an unsuccessful MVD- no compression was found.
Usually if you do not get a good result with a temporary nerve block they do not go ahead with rhizotomy. I had to have nerve blocks first with at least a 60% improvement, you should know right away. I am not sure what kind of block you got, but mine was a numbing agent and steroid first then they go in to do radio frequency rhizotomy a week later to shut the nerves down. This was for my neck pain, it has helped that but I have gotten nothing out of it for the GN, ATN. You can get rhizotomy for TN but it is was not advised for ATN, and I don't think they know how to do it for GN....and if you are atypical it is not advised. Even TN can have mixed results sometimes worsening the pain.
I have listening to so many post of those who have had surgery, some do better, some no change and some get worse and the healing time is long and not without problems. Surgery is not on my bucket list at this time. I would look for a 2nd opinion if you are not getting anything from your doctors, pain management also. Sharon
I didn't know that if the occipital nerve block didn't work they probably won't do a rhizotomy. I was holding on to that as my last option. My calls have still not been returned and my pain continues to be wretched. The shot was done on Oct. 11 and it was the same as you described getting. Every day since then the GN pain has increased substantially. They did not do or mention a radio frequency rhizotomy. I tried to run errands last week and thought I'd faint from the dizziness and pain. I have a pain management clinic, but the nurse I see there refuses to increase any of my meds. His clinic is often full of seekers and I had to spend a couple months proving I was not a seeker, but in real if unseen pain. All the help from the meds has leveled off as they all do when kept at the same dose over a long period of time. I'm trying essential oils and any other alternative method I can think of. I wish I had an answer or could at least get a call from the neurosurgeon's office explaining if this is expected pain, if they can't do anything else for me, something or anything. I plan on getting a referral from my doctor this week for a second opinion as you suggested.
Thank you so much or writing me. You've been very helpful. This is the first day I've managed to be upright without wanting to scream, not because the pain is less, but my husband took our eldest out for a bit so I simply have to function. Anyhow I wanted to write a delayed thanks. I hope you have a lovely day.
Tracy
Granny said:
Usually if you do not get a good result with a temporary nerve block they do not go ahead with rhizotomy. I had to have nerve blocks first with at least a 60% improvement, you should know right away. I am not sure what kind of block you got, but mine was a numbing agent and steroid first then they go in to do radio frequency rhizotomy a week later to shut the nerves down. This was for my neck pain, it has helped that but I have gotten nothing out of it for the GN, ATN. You can get rhizotomy for TN but it is was not advised for ATN, and I don't think they know how to do it for GN....and if you are atypical it is not advised. Even TN can have mixed results sometimes worsening the pain.
I have listening to so many post of those who have had surgery, some do better, some no change and some get worse and the healing time is long and not without problems. Surgery is not on my bucket list at this time. I would look for a 2nd opinion if you are not getting anything from your doctors, pain management also. Sharon