YESTERDAY I SEEN DR BOVE AT NORTHWESTERN IN CHICAGO AND HE SCHEDUALED MY SURGERY TO TAKE OUT MY LEFT STYLOID PROCESSS OUT ON WEDNESDAY FEBRUARY 4TH!!!!! I WALKED IN THERE HOPING FOR THE BEST BUT EXPECTING THE WORST! IT WAS AMAZING! HE WALKED IN THE ROOM AND TOLD ME AFTER REVIEWING MY CT SCAN AND ALL THE RECORDS THE PAIN IS COMING FROM EITHER EAGLE OR A NERVE THAT RUNS ALONG THE EAR,NECK AND THROAT TOO AND THE SYMTOMS ARE THE SAME BUT HE WOULD NOT BE ABLE TO KNOW FOR SURE UNTIL HE TAKES THE STYLOID PROCESS OUT FIRLST. HE SAID THAT IF IT IS THE NERVE, THERE ARE MEDICATIONS FOR IT SO EITHER WAY HE WILL HELP ME!!! HE IS SO DOWN TO EARTH, VERY FRIENDLY AND WHEN I BROKE DOWN IN TEARS AND STARTED BABBLING HE JUST SMILED AND SAID ALL WAS GOOD!! I ASKED HIM IF I COULD SHARE HIM WITH YOU ALL AND HE SAID "OF COURSE!!!". THERE WAS NO DRAMA, NO ARROGANCE AND NO GUESSING!! HE TOLD ME THAT THERE ARE TWO WAYS OF TAKING THE STLOID OUT, THROUGH THE MOUTH OR A LITTLE INSICION IN THE NECK. HE TOLD ME THAT HE WAS GOING TO TRY AND GO THROUGH THE MOUTH FIRST. HE TOLD ME THAT GOING THROUGH THE MOUTH HE WILL NEED TO TAKE THE TONSIL OUT (ALTHOUGH HE TOLD ME I DID NOT HAVE TONSILLITIS LIKE MOST OF THE OTHERS TOLD ME IT WAS) BUT IT IS LESS INTRUSIVE THAT WAY. HE TOLD ME THAT IF HE CAN'T GO THAT WAY HE WOULD GO THROUGH THE NECK BUT IF HE DOES THAT I WILL NEED TO STAY THE NIGHT IN THE HOSPITAL. IF ALL HE NEEDS TO GO IS GO THROUGH THE MOUTH I WILL GO HOME THAT NIGHT!!
Great news for you!! I am excited for your progress!!! So is he going to do intra oral or through the neck or do you know? Keep us posted on your progress!!
I am glad you have found a doctor that can help you. I have TMJ, eagle syndrome on both sides and atypical facial pain. i too have pain when I turn my head. They did try to go through my mouth for the surgery on my left side but wound up going through my neck instead. I wanted to share with you that for me the surgery did not end my pain. I have had to work on my TMJ joint and neck muscles. Since you have 2 weeks before your surgery I would start working ASAP on being as healthy as you can so your body can heal. I have changed my diet, work hard at keeping stress down and exercise. I have used a treatment called myokinestics to work on my TMJ and neck muscles. I also have a specialized bit plate I wear at night to rest my TMJ joints. They do have a new ear pieces for TMJ but I have not met anyone who has purchased them. They make molds for your ears and you insert them in daily to relax the TMJ joints. I will you well in your journey and if you have any questions please send me a private message.
Imunigue724: Thanks for sharing your experience with Dr. Bove. Please keep us posted on how your surgery goes. I live near Grand Rapids, Michigan, so this may be an option for me. God bless and best wishes!
That is great news! You must be so happy to finally have a plan and hope for a return to "normal"! The external method is what I had and it was very easy. No matter what they do, it sounds like you will have some relief finally :).
I am very happy to see the end of this tunnel. As have most of you, I have seen so many doctors who have tried to tell me they want to treat the symptoms and don’t want to deal with the problem. I have been pushed on to so many diffrent “specailsit” trying to find SOMEONE who is knowlgeable enoght to understand what Eagle’s is and how it causes all the symptoms we experieance. EVERY doctor, except for my inital ENT, told me that Eagles was not a factor in my problem. I am so glad that I was able to find an ENT early on that was able to diagnose me and would not give up on finding the right doctor for me. As with most doctors, Eagles is not something commonly known so it is mostly goes undiaglnosed for moths if not years and we live with the pain it causes. My last doctor I seen was my neurosurgeon who was totally taken aback by what he seen. He was the one that told me looking at my scans, I look great, dong the examination however has him very worried and told me to go to find an ENT at Northwestern and to NOT give up until I find someone who I am comfortable with and will actually listen to me. I was so lucky to get hooked up with Dr Bove. I was ready for the attack if/when he told me he didn’t know what it was and wanted to pass me off to another doctor. He came in the office and I was suprised by how young he looked and how relaxed I felt for not knowing him. He told me first off that I did NOT have tonsillitis and began to expalin to me what Eagle Syndrome was and showed me what the styloid process was on a chart and showed me about where mine came to. He told me that it could also be the nerve that runs in the same area. but told me the only way to know that is to take the styloid out and if it was the nerve there are medications for it. He told me that either way he was going to help me. That was when I broke down in tears and started to cry and babble. I just wish I would have asked him how many surgeries he has done. As soon as I find out, I will tell you. I told him about out community and my past experiences and he was very happy I didn’t give up and told me that it was perfectly fine to share my experience with him with the community. He actually seemed honored I would ask him!! Like Dr Ghaly told me, there are a lot of doctors out there…DON’T GIVE UP!! Keep seeing them until you find the one you feel is there to listen and help you!!
I have nerve pain running along my jaw, under it, and giving me tooth and earache, plus up one side of my face and my eye van be tender too. This has been helped so far with amitryptiline, and there are other medications which can help too, so if removing the styloid doesn't work on that pain, hopefully your wonderful doctor can still help with these. I'm sure that it is caused in my case by the styloid rubbing on it, so although my pain has eased a bit at the moment, I'm hoping for the operation as a long term solution. I really hope the op will work for you!
Hope that things are working out work-wise for you too.
At the clinic where I was diagnosed, I don't think the consultant believed me that I was getting pain in that area! I had an MRI which showed no other problems so it was concluded that it was down to ES. I researched myself and presumed that the styloid's pressing on the trigemenial and the glossopharangeal nerves. I asked my GP for the amitriptyline, and as that's helped quite a bit, although this week's been worse. I've decided that the only long term solution is to have it removed, as I don't want to be on painkillers for ever, and manage as best as I can until then. Thanks though, and glad for you that you don't have to wait too long!
Just want to say to Jules, we seem to be very similar in our pain. My trigemenial nerve was very affected by the styloid bone but was also damaged at the dentist office either by keeping my neck turned for too long with the bone pressing into the nerver or injecting the nerve leaving an unhealing puncture. I did try all the medications the doctors had to offer but none worked. I went from being in good bone health to having ostyoprosis in 3 years while on those medications. I believe the medications caused my brittle bones, I am 57 and now have broken 3 bones in 2 years. My pain is much better but now I live day to day trying not to break another bone. I hope you work on your bone health because any long term use of medication is acid to the body and women especially need to be concerned with long term medication use and bone health. Getting to the source of the pain is important to have the pain stop in my opinion.
Good luck everyone, there are answers to our pain hopefully we will not do more harm to our bodies while looking for our solutions
Thanks for that advice Ann- I have tried to research the long-term effects of amitriptyline so I can make an informed decision about surgery, but couldn't find anything! I can't do the bone-strengthening exercises I used to because of the pain from ES, so that is a concern. I'm eating healthily at the moment so I'm in the best health in case I do have the operation- lots of fruit and veg juices!
Thinking of you and your health Ann, and God Bless
Jules.....I too am limited with my movement due to my ES on my right side, the bone is still in place but I work around it. I asked to have the right side operated but my doctor feels that it is not necessary right now. My doctors told me that there was no data that amitriptyline leads to bone loss but if you go to you tub you can find some information on how drugs are acid and bones need a alkaline diet to build and repair bone. I would say to anyone woman that after age 30 they should be working on bone health. The 4 years prior to my ES diagnosis when I was just listed as Atypical Facial pain I lost a lot of bone, stress and drugs I believe lead to this problem.
We all need to eat healthy, deal with stress and exercise as much as our illness lets us.....