So, after 25 years of suffering with bouts of Trigeminal Neuralgia pain, my acupuncturist suggested that I get checked up for Eagle's syndrome as the pain points he was finding seemed to indicate that I might have that rare condition. I told my chiroprator who took a fresh look at my x-rays and said "Oh my, yes you do!". Back to the neurologist who recommended MVD surgery in Nov 2013, which helped for 7 months and then it came back. He was really miffed that it came back so quickly and didn't know what to think. I kept pressing the issue, that if the pain came back there had to be a reason. He didn't have much to offer. Then when I went to him with what my chiropractor said, he ordered the CT scan and sent me to the ENT at our clinic. The neurologist didn't think there was any evidence of Eagle's but admitted he had only seen two cases in his ten years as a dr. The ENT said immediately that my styloid processes were both quite elongated, but the only way to really know if I have Eagle's is to remove them and see if the pain goes away.
It would be nice to know before having surgery, but I am so tired of being on anti-seizure medication even though it works well for the pain, it leaves me feeling like I have alzheimers most of the time and it is getting hard to get through the work day, my brain gets very tired.
So long story short, I will have the right styloid removed on July 20 and if that seems to help, he will do the left one which is longer, but is just starting to cause some symptoms. After having brain surgery (MVD) I am not looking forward to another surgery even if he says it only takes an hour. What if it doesn't work? But what if it does? I don't look forward to another bout of recovery, but I can take extra time with medical leave if needed. He thinks I'll be able to go back to my desk job after a week.
Have any of you been on anti-seizure meds for the Eagles pain? I am thinking I should stay on it for a while after the surgery if there is nerve irritation, but hope to be able to get of it within a few months.
I'm on amitriptyline for the nerve pain, about 8 weeks post-op now, but I haven't been able to come off it yet. I'm on a low dose, but still had some pain before surgery even with the medication. I've found the last couple of weeks that I'm not getting the pain often, so I was hopeful that it'd gone, and tried reducing the medication, but it came back straight away. So back on it again, but I don't have any side effects, so will just have to be patient. Some people have found it's taken 6 months or more for an improvement, some have never had any improvement so presume that the nerves were damaged too much to recover..... I feel a lot better for having surgery though- no dizziness, not so much pressure in my ears, less tinnitus, clearer head and less tired. Some were vascular symptoms though.
So I would stay on the medication after your op for a bit, to let everything settle, discuss this with your doctor and reduce it gradually with their guidance. I must admit I was still in pain from the op, and had quite restricted movement probably for nearly 2 weeks, so I wouldn't have wanted to go back to work after a week, although I know others have.
Good luck with your surgery, and let us know when you have a date!
Sorry, just re-read the title of your discussion - doh!!
Best wishes for your surgery, Hope!
I don’t think it would hurt to stay on the meds at least a little while if you experience nerve issues. But I would have a plan for weaning off so you can tell if the ES surgery is working. Do you have tonsils? That is a bit tougher for recovery, but having one side done at a time is easier. I had both done at once but had no tonsils. Ask your surgeon exactly what he is going to do. How much he is taking out etc. some docs believe the success rate for the surgery is 50% others think it’s higher. They should be able to tell if it’s ES by massaging the tonsil area. If that aggravates the symptoms, then it’s ES. Some people have long styloids with no symptoms at all! Only 4% of those persons have symptoms of ES so it is indeed rare.
thanks for the well wishes. no, I don’t have tonsils they came out when I was four.
My son had trigeminal neuralgia, glossopharyngeal neuralgia and was in the process of being scheduled for MVD when I inquired about Eagles. We got the same advice, that you won't know until you try it. My son was a success story and he had both sides done. No one believed it to be true, but he is pain free. :)
I've had one side done & am waiting for my second surgery. I have complete relief from my pre-op symptoms but do still have some facial tenderness from the surgery (only when I poke around though - otherwise it doesn't hurt). Part of that is my fault as I fell off my bike & onto my face on my post-op side in May which re-aggravated some of my post-op symptoms when they were nearly gone. I advocate surgery. It worked for me. Can't wait for round 2!
I'm sorry you've been through so much. I hope having your styloid(s) shortened will make you pain free (after a reasonable healing period). It did take about 6 months after my first surgery for my nerve pains to subside. I'm glad you're taking this step.
I’m sufferring of this rare condition for more than ten years until may 2014 i got diag with eagle syndrome, one reason that doesn’t make me decide to get the surgery is that the surgeon says he is not sure if I’m going to get better, please let me know if you see any improvement after the surgery,
Good luck with your surgery, Hope.
Cuca, I've been reading on the forum for several years now and almost everyone that I'm aware of has been helped by surgery. Sometimes the doctor doesn't take enough of the styloid out and the patient has to go back for another surgery. If your doctor has heard that patients aren't helped by surgery, it's usually because the surgeon didn't take enough of the styloid out. But surgery almost always helps.
I'm sufferring of this rare condition for more than ten years until may 2014 i got diag with eagle syndrome, one reason that doesn't make me decide to get the surgery is that the surgeon says he is not sure if I'm going to get better, please let me know if you see any improvement after the surgery,
Hi Hope, my best wishes, God will walk u all step of the way. What date/ time is your surgury ? I can pray for you.
hi and thanks again for all the well wishes and prayers. I don’t know the time ywt, but the date is july 20. as soon as I am up to it I’ll post how I am doing.