Yes, thinking back on it, now, I wasn’t allowed to see the surgeon at first. I probably asked my GP for a referral, but depending on your insurance situation, sometimes they don’t require a GP to refer. In either case, I didn’t get to see the surgeon at first, but was seen instead by one of his younger colleagues. The UW Medical Center in Seattle is a teaching hospital, so there is a hierarchy to follow. It took 10 months and 5 visits before the actual surgery was performed. It was hard to be patient and keep the focus on the symptoms and away from my feelings of frustration. I tried to just fit in to the system.
Hi Kandi, I don’t know if I stated this Earlier but I am in the Greater Seattle Area. When I found out the UW doctor had only done 1 surgery (at the time of my investigation) I chose not to go that direction. If I knew he only did inter-oral I wouldn’t think twice not using him. Mark is right the UW is a teaching hospital. I used to know doctors who were heads of departments there and they are now retired. They were voices of reason for when the explainable/categorized happened and are sorely missed. When I read the spread sheet of who has done multiple and successful surgeries, I chose to contact Dr. Samji in San Jose. My husband and I flew down to San Jose thinking it would be a first patient pre op appointment, but because my musical profession scares everyone I’ve been delayed a couple of months while on gabapentin. I watched the interoral procedjure on Youtube and it greatly concerned me. I used to own a musical instrument repair biz. that means I’ve worked with ivory and bone, woods and metals. The interoral surgery on Youtube showed breaking off a bone without any view of what’s left behind. In my non medical opinion this is absolutely ludicrous. I don’t care how sharp the instrument / tool is- a bone will fracture and splinter. I can’t believe that sort of surgery hasn’t been taken out of use. I also believe it’s ineffectiveness is why Wikipedia claims the bones often “grow back”. I’m not a doctor, but many of my doctors are my friends as well. I discussed this method with my rheumatologist and she agreed with me. She’s super busy but is from Canada. I’ll write her and see if she has any suggestions for you as far as dealing with Canada / US. San Jose is just a 2 hour flight from Seattle. If you’d like to drive down and fly from Seattle to save money I will help you, if I’m not dealing with surgery myself. I can ask my family to help you if I am in the midst of surgery. Hang in there.
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My surgeon at the UW was Dr. Merati, who told me he prefers extra-oral for a variety of reasons. He said he has a colleague who does intra-oral, but he didn’t name him/her. My scar is quite visible, but I don’t care. I’m happy.
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I for sure need extra oral…I don’t even feel the styloid in my mouth and even out here I told that my styloids are not growing inward into my mouth, but outward and I feel the hard mass all the way from my ear under ge jawline and I had poke the tip of the styloid with my finger in my neck. …I would hi I if don’t in the mouth, that they would not find the styloid!!
Also I don’t want my jaw ruined more, I already have right jaw damage from getting my wisdom tooth pulled last March.
Then I don’t want to lose my tonsils, and I wouldn’t want to worry about infection too.
I am also sick with Lyme disease and weakened to bed bound either from vascular Eagles or Eagles and the Lyme…I have been a bad traveller even when I was healthier and it sucks the life out of me, I need closest to home as possible. Seattle can be a 3 hour drive for me. I can’t sit up for long because of my weakness, I thought of travelling via motor home, then we all have lodging too.
I have now learned of a Dr. Weaver there that does Eagkes surgery for sure, I’m waiting for a call back, I expressed I do need it externally.
I have no referring dr, but the administration said I may be able to self refer.
Mark, if you can find out that Merati does Eagles for sure?
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Oh to state again, Jeffery Houlton says that he mostly does inter oral, but has done external, does t seem to like it though, I do t know if I can convince him to to extra for me.
Weaver I have no found out yet…
This Scott Beavens, I will have to call about him still.
Make sure not to call it “Extra - Oral”. They might assume you mean inter- oral. There are a lot of terms being thrown around but the word “oral” usually means inside the throat.
I’ll just say in the neck
Dr. Merati’s process is slow and took multiple visits. He evaluated my case for ES, ordered a CT scan, prescribed Gabapentin to observe, interpreted the scan, diagnosed not Eagles, but a neighboring structural problem, injected me with lidocain to observe, scheduled surgery, and on the eve of surgery to remove the left superior horn of my Adam’s apple, (very near the hyoid), he told me he would be in visual range of the styloid and if he saw a problem with it, he would “pop that baby out of there.” So yes, Dr. Merati is quite familiar with Eagles as well as other skull-base structural problems. However, his process is slow and looks nothing like an assembly line. His mind is fluid, flexible. The virtue of that is that it enabled him to see my case in a whole new light. Another doctor might have sent me away when the CT scan showed no problem with the Styloids, but he looked further and found my cartilage problem.
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That was good for u in your case…and good u live near by for it, and I did have another area of pain which is good he found…however, that’s not may case. I do have pain in other places yes, in which I am thinking I have Intracranial Hypertension too…which is another thing I hope to get checked out while I’m out there, as I couldn’t get these canadian jerk doctors to look at…,however, I for sure don’t have pain in the area that you did. The area of the styloid I have in pain very specifically, and already did scans out here, and the stupid testing of gabapentin…which I have absolutely no respect for, bandaide with drugs so they can avoid to fix the cause is lame, then it kicks in other symptoms and destroys the organs, however I already did that out here too…it doesn’t work to take out the feeling of a bone poking into the neck…I also do not have a while out there, as i don’t live out there…I would have to make one trip, just to get this dealt with. So being I’m glad at least all scanning has been done out here, I would be able to mail it over to whatever dr for viewing.
I didn’t have surgery done because he couldn’t definitively diagnose ES, but he mentioned that he does this surgery intraorally.
Mark, has the bone grown back (styloid process elongated again)?