Recommendations?

I have the opportunity to have Dr. Cognetti, Dr. Hackman, or one of the Dr’s in AZ do the surgery.
It seems Dr. Sanji is the most experienced but I don’t have the connections as I have near the other Dr’s.
I would love to hear everyone’s experience with the surgeons.
Thanks in Advance
Suzzette

Hi Suzetteas,

You can click on the magnifying glass icon above right & type in a doctor’s name & the posts about that doctor will come up for you to read. If you have specific more personal questions about a given doctor, you can click on the name above a given post & that will put you on a page where you can send a private email (i.e. no one else on the forum will see it but you & the person you’re sending it to) to the person who made that post.

What we know is that Dr. Cognetti & Dr. Milligan (who has the most surgical experience of the 3 docs I’m mentioning) both leave about an inch of styloid process (the normal length of the styloid) when they do surgery & both require 2 surgeries (1 for each side) in bilateral cases. There is mixed information about whether or not they remove the stylohyoid ligament(s) if calcified. They have helped many people, but there are a few members who needed revision surgery after a couple of years because the styloids regrew just enough to cause problems again. Dr. Hackman tries to cut the styloids back to the skull base & uses either the intraoral or external surgical technique based on what he thinks is best in a given situation & what his patient requests. He is also willing to do bilateral surgery rather than spreading the process over 2 surgeries. We have one member (Adriene61) who had bilateral robotic intraoral ES surgery done by Dr. Hackman, & she said he removed the styloids to her skull base & also removed her calcified stylohyoid ligaments all by the intraoral route. This was new info for us as we understood the stylohyoid ligaments could not be removed intraorally.

We do have concerns about bilateral surgery being done all at once as the initial recovery time is longer & more painful than having two surgeries. There is significant swelling in the throat post op which is one reason many doctors prefer two surgeries as they feel it’s safer.

Doctor Hackman did bi-lateral styloid removal and the process intra orally with the Davinci Robot as well as taking out my right thyroid at the same time. I can not say enough about him. He has many specialties. Many years he won the award when the Doctors vote on whom they would want to operate on them. I’ve been to so many specialist over the years and hands down the best doctor in everyway I’ve ever met. I have heard good about all but Milligan which I haven’t heard anything. Now they all have in rare occasions had problems. You are working close to the nerves. I know Hackman did a revision that Cognetti did but I don’t think it had anything to do with him. One of those things that can happen. I’ve probably heard the most about Samji. Even with the best of best things can happen but I would want to be with a great surgeon. I forgot to mention that not all people are candidates for the robot. Dr. Hackman does both Robotic which has 10x the vision and external. Best of Luck!

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Hi Adriene
Thank you so much for taking the time to pass on your experience with me.
I do have an appt with Dr. Hackman on March 4th. I wonder if I will be a candidate for robotic surgery. That was the one thing that intrigued me about him. I have bilateral calcified stylohyoid ligaments. The right is protruding into my mouth but I can tell the left is there also because the tissue in my mouth is so red where it must move over the calcified ligaments.
I had a telehealth appt with Dr. Cognetti but he didn’t discuss the procedure because he needs to see me in person.

I hope you are a candidate. I know you have to have your styloids because the robot takes the end of it and follows all the way down to the hyoid. Another one in the group had surgery with Dr. Cognetti and Hackman did her revision as he does not take out the process. He couldn’t do hers robotically because her styloids were already removed. Hackman and Cognetti are good friends. They trained together Cognetti was a year ahead in school and Hackman was the chief resident. ‘’

I am having many other health issues. I am having surgery with him on Friday the 26th. I have a lot of problems in my throat. a tumor in my parotid gland and my left thyroid has more nodules and is very enlarged. I also have some fragments that broke off in surgery that are calcifying giving me some problems. Nothing like before. So he is going to have to cut in front of my ears and behind them on both sides. I am nervous about this. He told me more complaints about the intra oral than external as far as pain. But I can honestly say it was so much easier than I thought it would be. The worst part to me where when the stitches started to hang down as you are healing. I even got cuticle scissors and cut them myself because that was annoying.

I don’t mean to scar you that he is going back in. That is always a risk that parts can break off. I think Hackman Cognetti Samji all are some of the best but all of them have had revisions or some problems. I know a nurse in the ER room has eagles. She is from California and Samji did hers and she said the only problem she had was he hit a nerve and she has permanent tinnitus. But she said she could live with that because she was so much better.

I know it seems like Hackman has been doing more external lately. I am going to have to ask him if that because patients are telling him the healing is harder. I might be the exception but it was honestly very easy for me. I expected so much more pain. I don’t think I took but one pain killer.

It is a long surgery though. I didn’t know until the morning I was there. I guess I didn’t ask but it was 9 hours but I also had my right thyroid removed at the same time. Having had it so easy the first time I am really anxious about him cutting me externally. I know I am in the best hands though. He is also vascular and he does reconstructive cleft palates. I think most of his work is with cancer patients.

Originally my doctor sent me to him as they thought I had giant cell vasculitis. He had to cut a piece of my carotid artery out and send it off for biopsy. I felt confident with him also doing vascular with that. You have to look very hard to see that scar. My primary still isn’t convinced I don’t also have vasculitis. They had me on a high dose of prednisone which I forgot to disclose and they said that would give you a false negative.

Let me know how the appointment goes. I know you will love him. He has the best bedside manner…

Good Luck, I hope you get some resolution soon. It is a horrible disease.Like I said I have many other issuesT that don’t have to do with Eagles but luckily he can treat my thyroid and many more things. I feel so blessed to have found him.

By the way where are you from?

Take care

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adriene61,

I’m sorry to hear you’re having some further health problems & also need revision surgery for ES. So glad you had a great experience w/ Dr. Hackman & that he can help you with the things you need to deal with now. Having a surgeon we feel confident in makes a world of difference in how we approach both surgery & recovery. Also understanding that no matter how good a surgeon is, none are perfect, & unexpected things can happen during surgery that leave us w/ some residual symptoms. In many cases those are minor to which your nurse acquaintance & I can both attest

So sorry that you have more health problems and need more surgery, very unlucky… I’m glad that you found the intra-oral surgery recovery not too bad; generally most people on here find intra-oral a harder recovery, so I hope that your recovery this time will be the same. I’ll be thinking of you & will pray that your surgery goes well :pray:

Thank you. It’s not a revision of Eagles. Unfortunately I have a lot more going on than that. I had a CT scan done after Eagles and My neurologist showed me where my process should be. He was like wow who did your surgery? He said it was the cleanest he had ever seen he got it all the way to the hyoid. I have two calcified fragments floating in my skull. It could be that these fragments broke off in surgery but it may be something else all together. But yes every doctor has had something happen. But as far as this goes I would never blame him as before surgery he tells you of all the things that can happen and that the surgery may not take care of all symptoms. I have a tumor in my parotid gland. My left thyroid is extremely enlarged and more nodules. I’d be surprised if he doesn’t take it out. I also have something in my larynx. He is going to go into my skull and get the calcified fragments. I hate to say this isn’t a new thing for me. When I had double knee replacement in less than a year I got what they call knee lock from bone spurs in my right knee. Everyone kept saying it takes a year to heal and I said I understand but I know the difference is my left is fine and my right is severe pain and locking. . I had to go to Duke and they looked at it and did surgery right away and got three shot glasses full of spurs and scar tissue. I was immediately out of pain.

The neurologist says I have something attacking my Central Nervous System. It is leaning toward MS but it takes a long time to diagnose that. He did say we know something is attacking your CNS and at this point not sure but I promise you we will find out… I have right sided headaches. With Eagles I had stabbing Electrical and those are gone. My neurologist is going to do a nerve block to see if that will take care of the right sided headaches. I have noticed that most of Hackmans recent surgeries on this group have been external. I am going to ask him why. I know he has said not all are candidates. He also said that more patients complain of pain with the robot which I don’t know if I just had an easy time or I have a high pain tolerance. Right now I’m having a lot of temporal pain. He says that goes along with the floating fragments. He also said he can not guarantee this will take care of the problem. He also said whether it be external or internal Fragments can break away and float and there is no control on that. He has to cut me in front of my ear at the top to the neck and behind to go after the floating fragments depending on where they are now. I guess I will have a personal opinion on what is easier. I assume I’ll have a horizontal cut on my neck for the thyroid. I just pray it is not cancer. That’s my biggest fear. Thank you for your kindness and I will let you know how it goes. I am going to be admitted to the hospital with all they are doing so it may be a while.Have a great day!

My goodness, that is a bummer that you have those pieces floating around. What does that feel like to have that going on? That is kinda scary.
I will pray all goes well for you during this go-round.
I do have my styloid so we will see. I did think doing both sides would be optimal so I can get on with my life. After learning how long the surgery is I think I would opt for one side at a time.

Hi adriene61,

I did understand that you have much more going on than just the calcified pieces that got left behind. I guess I felt that chasing those down is a revision of ES surgery of sorts.

I know you have a lot on your plate. I also have cysts in my thyroid which I get monitored by ultrasound annually. A couple of them are calcified so they’ve been fine needle biopsied but so far all is well. I hope your left thyroid is only enlarged because of the cysts & not from cancer. I’m so glad you’re very comfortable w/ Dr. Hackman. I know he will do well for you. It sounds like your recovery will be longer & your pain level perhaps higher this time around. Use the good information we have on this site to help you w/ your post op recovery. It will be very helpful.

We are here for you always. Please let us know when you have a surgery date.

Sounds like you’ve had way more than your share…I’ll be thinking of you & keep in touch about your surgery date. A worry for you, will pray that it’s not cancer :pray::bouquet: