Dr. Cognetti removed both of my styloids - had two surgeries about 4 weeks apart (normally I would say wait a couple months in between, but needed to get them in on this insurance year). Mine were each over 2" long, with my left one being more curved than the other. I suffered for over 5 years with pain, which eventually led to trouble swallowing and just chronic every day neck pain. I was reluctant to do the surgery because of others who have not had pain relief, but I got to the point of not being able to bear it anymore and went for it.
I traveled from the midwest to Philadelphia for Dr. Cognetti because I wanted someone with considerable experience at the surgery. Local ENT’s said pain ws not from Eagles and that I should try voice therapy with a speech pathologist. Uggh. It is like medical abuse. Immediately after the first surgery I had relief from the neck pain! Please consider finding an experienced (I only considered Cognetti and Samji, Cognetti was closer) surgeon to remove your bone if you are symptomatic. I had the external approach and the recovery period was very manageable and nothing to be afraid of, if you are suffering you will find the surgery to be well worth it and nowhere near the level of living with chronic neck, facial, ear pain.
On my surgery f/u, I asked Dr. Cognetti about the regrowth issue, he said that he has not had one patient with regrowth issues. So for now, I am trusting that and will hope that my years of suffering with Eagle’s has come to an end. One month after my second surgery and my Eagle’s pain is 90% + improved!
I’m in Austin TX so a ways away but how do you recommend finding the most experienced doctors? Anyway to actually check surgery history? Or do you have to talks their word on it?
I know there is a doctors list but I had my first appoint with Dr Robert Nason (he isn’t listed but someone on a Facebook page recommended him). He seems familiar with Eagles and says he has done surgeries but how do I check?
Also I’m happy everything seems to be improving for you. Hoping for the best!
That’s great news, Tuskgirl, and hope that the remaining 10% goes as well! Re-growth does seem rare so hopefully you won’t need to worry about that, enjoy being pain free!
Michell1209- hopefully you’ll get some answers to your question about Dr Nason, but I think if members can’t see the most experienced docs for their surgery, it’s best to talk to the docs as much as you can to get a feel for whether you’re confident with them or not. Ask about their surgery method and why they do the surgery that way, and the most important thing is to make sure that they’re prepared to remove as much of the styloid as posiible, and that it will be taken out, not just snapped off and left in. If the doctor is used to operating in that area, then hopefully all will be well! It would be great if some of the really experienced docs would publish a paper about their surgery methods so other docs could learn from them- it didn’t ever think to ask about that after my first surgery, and saw the more junior docs on my second surgery follow up.
Hope that you get some help soon.
Hi there michell1209! Sorry you are going through this and kudos to you for pursuing a solution! I would be really diligent in finding multiple patients who have had a successful eagle’s surgery experience with Dr. Nason. Do all of the research you can do. Ask your doctor how many of these surgeries he has done and what the recovery has been like for his patients. Also, I know that some doctors do not remove the entire bone, some use internal approaches, and most of all, some doctors just cut through things to get down to the bone vs. knowing exactly how to move things out of the way long enough to cut the bone off as far up as they can to prevent regrowth. Before my surgeries I read many stories of rough recoveries, first bite syndrome, and the second side being substantially more painful then the first. I experienced none of these and Dr. Cognetti said he feels that first bite syndrome is caused by the surgeon cutting through some things that should just be maneuvered out of the way. My second surgery was actually less painful than the first (which may have just been a fluke, but my second surgery was actually longer and more curved than the first). My recovery went well, I was concerned about swelling and asked about a steroid to help, since I had read some horror stories. He again said that his patients have minimal swelling and usually don’t require it. I did have swelling, but nothing horrible and it seemed to follow the normal course of swelling more on day 2 and then progessively down from there. Just do all the research and communicate with your doctor well before the surgery. I know Dr. Samji in California is very experienced as well and have read many good things about patients doing well with him. You can look into your insurance and see if you have national coverage, a lot of people do and don’t realize it. My surgery was same day surgery, I stayed in a hotel and was able to travel comfortably about two days after my surgery. Of course I was careful and still post op, but it is doable. Dr. Cognetti worked with me to arrange the preop testing and visit to be the day prior, I also did the initial consult and surgery f/u appointments with him over the web at no charge. It was still something I had to budget for but all of that helped. Good luck to you!
Thank you for the information. I have a question about recovery. How long would it be before I could realistically handle a 3 year old? When I asked Dr Nason he said about 3 days. Is that realistic? We recently moved to Texas and have no family here other than my husband. I need to know if I decide to do this if I need to fly someone in to help or if my husband can just add a couple extra days off to his weekend. Also, it seems like they only consider doing the surgeries separately (each side months apart). Do they ever do them at the same time?
Some doctors do both sides at the same time, but not many will because of the swelling. I asked my doctor and he said definitely not, it would be ‘too much’, in his words. I was glad to only have one done at a time as it would have been really uncomfortable otherwise. I didn’t notice much swelling but I had a drip which helped.
I have to say I wouldn’t have wanted to be running about after a 3 year old after a couple of days! And any heavy lifting would be really painful, I think pushing a buggy would too. Most people find that they need at least a week’s rest, if not longer. I know a few members have gone back to work after a week, but then that’s been to a desk job. But recovery does vary quite a bit depending on the method the doctor uses, what muscles they have to cut through, if at all, etc. If you can get help, then I would definitely try to do that.
Hi. I was wondering if you could perhaps give me an indication of cost for Dr Cognetti’s surgeries including hospital stays/fees in Philadelphia. I have Eagle in both sides too, but before I consider surgeries only here in the U.K (with doctors who have some experience but more conservative and possibly less likely to remove the whole lot to avoid regrowth), I am loooking at all options including doing it privately and paying cash even in the United States if need be. I would imagine it would end up costing a lot, but considering a few nights hotel per surgery is all that is needed before flying this gives me more confidence. Unfortunately my health insurance won’t cover usa surgeries, but the amount of issues I have due to eagles, it’s worth a lot to me. Any indication would be great.
Hopefully some US members will be able to help with an idea of costs… if it’s any help though, I had surgery with Mr Axon at Addenbrooks, and as he’s a skull base surgeon, he removed the whole styloid process right up to the skull base.
I did have private health insurance, but know that approx. $24,000 was billed to my insurance per surgery. Mine were same day surgeries, so no overnight stay costs. It is an expensive surgery to be done on self pay. You could possible talk with the hospital to see if they can reduce that for a self pay. Best of luck to you!
I would say 3 days is a bare minimum, realistically 5 days would be the earliest I would have been able to take care of a three year old on my own. Mine is a teenager, so I can’t say from direct experience. I think it depends too on how well your child understands that they can’t be picked up and carried and have to be careful of suture site on your neck. The first few days your throat will be extremely sore from intubation and surgery itself, you can talk but it is tiring to do so. Days 2-3 are the roughest in that regard. Also once the suture site begins to close, it gets a little tight and can be uncomfortable, for me that was around day 7. All doable, take pain meds when you need them. If your child understands your ouchie issues and can do a few days with mommie watching videos and doing self directed play, it is doable but I would say to wait until at least day 5 to take on watching while your husband is at work. You will be tired and need relief when he gets home from work. If you can get some help for a few days after your husband goes to work that would be best. Everyone is different, but with planning and some help you can do it!
Dr. Cognetti will only do one side at a time. I did mine 4 weeks apart due to having met my deductible for the year and trying to get the second one done with my deductible and out of pocket max being met. He was very understanding and worked with me to get the second one done just before the end of the year. My Christmas was not as big this year because of the timing but that was an ok trade off. Dr. Cognetti feels that it is too much stress on your body to have two surgical sites at once. I can’t imagine having them done all at once. I would imagine the pain would be too much as well as the swelling and ability to eat and talk. He also wants to be sure that the surgery was successful in reducing symptoms, as occasionally the symptoms thought to be caused by elongated stylohyoids are from something else. His view is that it is Eagles if the surgery improves your symptoms, which for me it did immediately. As far as recovery, invest in a L shaped pillow. I got mine on Amazon for around $20. It helped a lot with positioning and sleeping after surgery. I ate soup the first day, you will want to stick to liquids, then soft the first couple of days. Chic fil a iced lemonade was wonderful on the ride back to the hotel right after surgery. If you drink hot tea that would be soothing as well. On my scars I am using organic coconut oil, along with scar cream. I started that after the incision closed. So far so good.
Thank you. This post helped a lot. I will either make sure my husband takes extra time off or we fly a family member in to help with my son for several days. He is a bounce off the walls kind of 3 year old and he loves mommy cuddles. Having someone visit would help with that big time.
Tuskgirl, would you please explain your neck pain. I have severe neck pain on the right side midway down from my skull and my shoulder. I have a large swelling on the right side that I constantly try to relieve with massage. My neck down into my clavicle (collar bone) is always tight, Therapists cannot relieve it. Was your neck pain similar. That is really the only pain I have on that side other than the fact that I have had tinnitus since 2003.
I have neck pain and tightness. I have actually been to physical therapy for pinched nerves and tightness with no relief. My pain is pretty constant but I’m used to it because it’s been going on for years. When I’m stressed or tired it’s unbearable. I’m not sure if I have swelling because I’m heavier than I am normally.
Hi Tuskgirl, hope you’re doing well and found your experience very encouraging.
Hope you’re still on line and staying in touch as want to know how you’re travelling with your recovery and if you found that your symptoms have settled. Truly hope you’re doing well and you have found relief from your surgeries! This is a very hard and trying condition.
My story is that I strated feeling symptoms on the left side of my jaw/neck that were strange and painful some 3 months ago. these symptoms were initially intermittent and consisted of neck pain and feeling fatigued when I talked too much. Now the pain is constant with intense deep pain in my left ear, pain in the back of my throat and occasional BTS. Also have tingling sensations and find it hard now to turn my neck. Blood tests showed that I am suffering from glandular fever and thought that this might have caused the irritation and hopefully with time my symptoms would abate with the virus.
However, I had a 3D scan recently and found out last week that my styloids are 4.2 cm on the right and 4.4 on the left! Not sure why, but was wanting for them to be shorter so I did not have to congront the reality that I need to have surgery.
I am now trying to decide on surgical options including the approach. I live in Australia and have found an excellent surgeon through Retrorocks posts here and recommendations! Also, open to having surgery in the US as I have family in the States and want to assess all options before making a decision.
Wanted to also take the opportunity to thank everyone who has already sent replies and messages to me. Your support and this site has been amazing and has helped me immensely!