Hello friends. As I've written here I had an unsuccessful MVD for my Geniculate Neuralgia on July 9. The neurosurgeon recently agreed with me that it, unfortunately, was not a success. I am now scheduled for an occipital nerve block on Oct. 11. Has anyone had this done, and if so did it lessen your pain at all? I am taking as much Tegretol as my kidneys can handle, along with two types of opiates and antidepressants. Every day is still hell. There is no escape from the constant pain. I'm glad my neurosurgeon has decided to try this instead of a rhizotomy next, which is scary and has so many side effects. I'm hoping someone has a success story, or any story to share about having this procedure done. I'm not worried about the pain- I was having Botox done initially as they tried to help the migraines I get as a result, and that was really painful! Thank you!
I have atypical GN, I also have a lot of cervical neck pain. Rhizotomy of the cervical and botox has really helped the neck. Not the GN. Even botox in my scalp at the occipital area did not relieve the GN. I am so sorry you have gone all the way to surgery and seen nothing. I was considering surgery but now am backing away. I just upped my gabapentin from 900 mg. a day to 1800 mg., I am getting less ear lobe pain, the ear pressure is not as constant. I have been on gabapentin since 2000 for neuropathy in my legs, so going to try and increase again. Swelling is a side effect I thought I would get going up the first time but that did not happen, but I am gaining some weight. I am also very interested in neurostimulation but so far they only do it for TN. This type of pain is very hard to treat. Have your doctors offered narcotics?? I take low dosed of 2, one is time-released and the spikes are not as bad. Sharon
Hi RueAnn! I too am sorry your MVD didn't help. I just got told that although I was a candidate for MVD when I first started seeing Neuro's for my condition, I am no longer a candidate. They can see the damage but frankly are too intimidated by the whole GN thing to even try MVD now, my Doctor said I would almost surely come out of it with no relief and deafness possibly paralysis.
I have had Gamma Knife Surgery as well with no results after 6 months and they will NOT repeat this as the first was unsuccessful and a change in radiation ^ would raise the potential for the deafness and paralysis as well.
Now I am doing a 10 to 15 try at something new called a P-Stim. Only been used in U.S. for a year but used widely in Europe for the past 10 years. I have just completed my 3rd treatment. Pretty painless, a few side affects for me but nothing that I can't take on for 72 hours. That's the amount of time you leave the P-Stim on and then you pitch it!
I had the nerve block done right out of the gate when I got my dx. but unfortunately it did nothing to help my condition.
Geniculate Neuralgia is a rare bird and mine was caused by the shingles leaving me with what is called post herpetic neuralgia...making it even more rare or so says my neurosurgeon and radiology-oncologist.
I'm gonna stick with the program though and prayerfully something will work...I've had a slight change in my pain since starting the P-Stim and that is a first! Nothing else has done anything to help me gain relief.
Stick in there, maybe ask about the P-Stim availability.
Something else.....my Doctors can see the damage on the nerve but told me frankly...we don't know what to do with it and they strongly advised me against additional surgical procedures. They think I will most surely come out of it paralyzed and deaf on that side. UGH!
Oh, and they give you goofy juice for the nerve block...mine wasn't particularly pleasant but it didn't take long...very strange sensations with it though. You'll do fine and I so pray it helps you.
I'll follow this to see how you're doing and please don't hesitate to pick my brain anytime.
PeacenLove Always~Laurel aka shinglesdidit
Laure, where are you getting the P-stim done? I am also interested in this. Keep posting how you are doing. You are dead right about this GN thing, don't believe everything you read on the internet as there are a few sites that say MVD can correct this thing. I am atypical and have been advised to do nothing invasive. I am in Florida and can't find a doctor that does this nerve stimulation. Good luck to you. Sharon
Sharon, I'm getting the treatments done in Detroit MI and have to travel 4 hours south for my Dr. but worth it. I know that my Blue Cross covers the treatments a 100% so it's got to be being used elsewhere in US...talk to your Dr. about it.
I started a discussion a while ago and keep updating as I plod through this process. My neurosurgeon is the one doing the P-Stim and told me it's new here in the U.S. ( a year) but Europe successfully for 10 years.
Hope this helps. Be glad to try to help you navigate this process as well. Let me know what I can do :)
Hello RueAnn .I wonder how you got on with the Occipital Nerve Block ? I have now had pain for quite a few years , and though the medication I now take holds the pain at a certain level , I would love to find something that would make a big difference , and the OCB might be a candidate ... it's one of the few possibilities remaining . Life is very low at the moment , and my head is full of negative thoughts that manage to squeeze in between the pressing armies of pain . Desperation drives me to seek solace anywhere that it resides . I do so hope that your pain has been noticeably reduced , and maybe that the armies of pain are on the run .
I wish you a happy and pain-free Christmas . Graham .