I didn't even realize there was a group specifically for Geniculate Neuralgia until today, when someone I know on the site joined. I just wanted to post and let everyone know that my daughter, who has both TN & GN, had successful MVD nearly 2 years ago. Her GN component she described as the "worst swimmer's ear ever." Being 11 at diagnosis, on swim team, and having suffered from "swimmer's ear" several times, that was her basis of comparison. While she still has occasional single hits or small attacks of TN if she gets exhausted, sick, or really stressed out, she has not had a moment of her GN pain since surgery.
However, she went through a pediatrician, ENT, neurologist, and 4 neurosurgeons who all lumped her ear pain in with TN before we found a neurosurgeon who knew enough to stop her when she mentioned ear, and drill down on that pain a bit more. He told us that TN was often caused by compressions of the Trigeminal Nerve (5th cranial nerve), but GN could be caused by compressions along the 7th, 9th, and/or 10th cranial nerve. If we agreed to do MVD, he would check the full length of all three of those nerves - though no one had ever seen any compressions of those nerves on any of her 3 MRIs. He found 2 compressions on her 7th, and 2 compressions on her 9th cranial nerves (in addition to a mess on her T-nerve).
It's been just over 22 months since that surgery, and she has been off all meds since a week afterward. Like I said, still some occasional, much lighter (though still painful at times) TN pain, but only seems to be triggered by exhaustion, sickness, and high levels of stress. None of that has ever lead to ear pain.
after she had the mvd, how long was it til she felt better. I had mvd a month ago and I am still having ear pain and tinnitus. My doc said that the nerve is still firing and that it should calm down. So far I don't notice anything. I am getting frantic.
So glad to hear she had success!! Did she have the pain for very long? Was she born with any difficulties with her ear? I was born with problems with my left ear / ear canal. The pain started after jaw surgery -- I had that done when I was 30. No one suggested MVD until last year. By then, I'm afraid it was too late to "cure." Even after the MVD, the nerve that's most unhappy has not settled down.
KTR's ear pain was gone immediately after her 2nd surgery, and has not recurred so far - 2 years later now. Her first surgery her surgeon only decompressed part of the 5th (trigeminal) nerve, not deep on the nerve near the brain stem (requiring moving her cerebellum out of the way, and not the 7th & 9th cranial nerves, and her pain came back. Her 2nd neurosurgeon did all of the above (and checked her 10th cranial nerve but it was clear), and she has remained medication free, and nearly pain free. She did have some lighter/shorter pains that were more burning pain during healing, but those have died down a lot. She will still get a little bit now and then of TN sensation, which we believe is because while she has fully healed, her nerve will never be like new after all it has been through. But we can deal with that.
KailyKay,
KTR was not born with ear issues, though her compressions could have been there since birth. We have "before" and "after" pictures from her neurosurgeon, and she even had vessels wedged between branches of the nerve, and there's no saying how long that was there. Her pain started on July 14, 2012, when she was 11 years old, and it hit like a freight train. She would have "attacks" of stabbing pain that started out being 45-ish minutes long, and worked up to over 3 hours long, and would hit nearly daily before she had her 2nd MVD. In between the attacks she would be perfectly fine - except for the medication side effects and fear of an attack, which grew pretty oppressive.
KTR’s Mom, can you please tell us who her surgeon was? I have suffered with facial and ear pain for 12 years and just recently a neurosurgeon indicated it may be GN. Thanks so much.
KTRs Mom said:
Jackie,
KTR’s ear pain was gone immediately after her 2nd surgery, and has not recurred so far - 2 years later now. Her first surgery her surgeon only decompressed part of the 5th (trigeminal) nerve, not deep on the nerve near the brain stem (requiring moving her cerebellum out of the way, and not the 7th & 9th cranial nerves, and her pain came back. Her 2nd neurosurgeon did all of the above (and checked her 10th cranial nerve but it was clear), and she has remained medication free, and nearly pain free. She did have some lighter/shorter pains that were more burning pain during healing, but those have died down a lot. She will still get a little bit now and then of TN sensation, which we believe is because while she has fully healed, her nerve will never be like new after all it has been through. But we can deal with that.
KailyKay,
KTR was not born with ear issues, though her compressions could have been there since birth. We have “before” and “after” pictures from her neurosurgeon, and she even had vessels wedged between branches of the nerve, and there’s no saying how long that was there. Her pain started on July 14, 2012, when she was 11 years old, and it hit like a freight train. She would have “attacks” of stabbing pain that started out being 45-ish minutes long, and worked up to over 3 hours long, and would hit nearly daily before she had her 2nd MVD. In between the attacks she would be perfectly fine - except for the medication side effects and fear of an attack, which grew pretty oppressive.
DD, absolutely. Her 2nd neurosurgeon was/is Dr. Mark Linskey at University of California Irvine Medical Center. He was the 5th neurosurgeon we talked to, and absolutely head and shoulders above the rest. Having a consult with him is like a graduate class in Trigeminal Neuralgia and facial pain conditions. We flew from VA to CA to consult, then to have surgery, and we fly back annually for check ups. Worth every penny as far as I'm concerned. Wish you all the best!
DD said:
KTR's Mom, can you please tell us who her surgeon was? I have suffered with facial and ear pain for 12 years and just recently a neurosurgeon indicated it may be GN. Thanks so much.
KTRs Mom said:
Jackie,
KTR's ear pain was gone immediately after her 2nd surgery, and has not recurred so far - 2 years later now. Her first surgery her surgeon only decompressed part of the 5th (trigeminal) nerve, not deep on the nerve near the brain stem (requiring moving her cerebellum out of the way, and not the 7th & 9th cranial nerves, and her pain came back. Her 2nd neurosurgeon did all of the above (and checked her 10th cranial nerve but it was clear), and she has remained medication free, and nearly pain free. She did have some lighter/shorter pains that were more burning pain during healing, but those have died down a lot. She will still get a little bit now and then of TN sensation, which we believe is because while she has fully healed, her nerve will never be like new after all it has been through. But we can deal with that.
KailyKay,
KTR was not born with ear issues, though her compressions could have been there since birth. We have "before" and "after" pictures from her neurosurgeon, and she even had vessels wedged between branches of the nerve, and there's no saying how long that was there. Her pain started on July 14, 2012, when she was 11 years old, and it hit like a freight train. She would have "attacks" of stabbing pain that started out being 45-ish minutes long, and worked up to over 3 hours long, and would hit nearly daily before she had her 2nd MVD. In between the attacks she would be perfectly fine - except for the medication side effects and fear of an attack, which grew pretty oppressive.
Thank you so much for your immediate reply. I greatly appreciate it. It is a real blessing you were able to find successful treatment for your young daughter. She deserves a full, pain free life.
Thank you DD. We are really thankful for what we have been able to find for her. Dr. Linskey is the best, and we've adopted him into the family - whether he likes it or not! She is thoroughly enjoying her life with very little pain now. It's a gift. :-)
DD said:
Thank you so much for your immediate reply. I greatly appreciate it. It is a real blessing you were able to find successful treatment for your young daughter. She deserves a full, pain free life.
Hello - I have not been on this forum for awhile - just got back on after seeing that the “Gremlins” had attacked the site. Mostly, I’ve still been having pain. I had MVD last May, 2015. Helped a lot, but not the sharp ice pick in the ear pain. Over the course of the year (2015), I had some shots for my neck / discs that were bulging. Finally, in February 2016, I went back to my neurosurgeon and asked for help. He looked at the post-MVD MRI and did not see any new compression. He tried some trigger point injections. Three did not work - the last one did work. I returned and had a temporary peripheral nerve stimulator implanted. I also tried to have medication in the hospital to give my body a break. Unfortunately, I had an allergic reaction so that didn’t help. I had great success with the temporary stimulator. I had to have it removed and wait another two weeks for the permanent one because of insurance battles. The permanent one seems to be helping. Not as clearly or easily as the temporary. It took me two weeks to recover from the surgery because it involves putting in a battery, like a pacemaker. Now I find that the stimulator works better /worse depending on which muscles are in spasm. My PT & massage therapist are working diligently. It’s only been six weeks… still, I’m very unhappy. After my “kids” return to school (college & grad school) I’m planning to try a pain clinic at Mayo. Other options - an ear / neck specialist who can maybe help my ear canal from continuing to get irritated. (No idea how -just a thought - but no surgery!) Work with someone who does only myofacial release so my PT can concentrate on other things. See a neurologist and try a different anti-nerve medication. (I’m on lamictal plus bacolfen. Over the course of the years I’ve tried almost all of them. I tried gralise two years ago and couldn’t get to a therapeutic dose without walking into walls. Tried Lyrica - nightmares. We live in VA also – maybe I should go to CA. Diana