Update - had surgery Monday

Hi guys, I had surgery on the left side Monday at Emory in Atlanta with Dr. John Del Gaudio. He showed us my 3d scan before surgery and both styloids are the same length, very long, & wrapped in my carotid arteries. (It was pretty crazy to finally see them and know what’s inside me causing all this and how lucky I am that I haven’t had a stroke with how active I am.)

He only operated on one side and removed 2 cm. He seemed to be very pleased even though I was hoping he could get more. It was intra oral. I have 8-9 stitches and am very sore and very swollen. Of course eating is very difficult as well as pretty much anything else but will get better daily I’m sure. Ice and pain meds are my very best friends!

I also learned via my scan that I have a nodule on the right side of my thyroid and when I go back for post op check up on November 12th, they will ultrasound it then. Good news is that I am using this surgery as an opportunity to quit smoking. That is a definite positive.

What length was your styloids? Was it a CT scan and did you have dye injected into your veins?

Glad it has gone well:-)

I don’t know the length. I asked him twice and he said he didn’t measure them but they were very long. It was a 3d scan with contrast. You could see everything on the images, bone, veins, etc. Thank you!

Thank you Heather, I’m Heather also by the way…lol
Well I had a CT scan but I doubt very much here in the UK on NHS it was 3d, so I don’t think they will see ny arteries I’m worried mine is like yours pressing on carotid artery, I have really odd episodes that worry me.
Thanks again and good luck with your recovery.

What type of episodes? I was having heart arrhythmias (for 6 months) that got really bad and finally slowed with a beta blocker given to me at an er visit. Everyone told me they were unrelated to es and then Monday I saw a vein attached to the end of my left styloid next to my carotid artery on the left side. My surgeon pointed it out.

Well I have had one biggish two medium and many small ones. The biggish one happened when I was out walking the dog (puppy) I ended up outside the shop without remembering how I got there, then i watched the lead leave my hand and my puppy running around In front of all the cars and I just watched unable to respond. I was could hear but all the sound sounded miles away everything was spinning. I was sweating. To cut a long story short, I did get to my neighbours house but not without passing out on the way.

That sounds like mini strokes :confused: You may have compression of one of your arteries. You really need a 3d scan done.

I fear you may be right with the mini strokes.
Hope you are getting better every day.

WOW!! So happy 4 u my friend. I do wish u a prompt recovery. About the nodule, don't worry, I had 3 during 2005, and by miracle they disappeared 2 yrs later.. U will have that pain for a while, but I least u know why u haf the pain now. Hope that once u healed, and other scans get done, u can get your other surgery to remove few cm from the other styloid.

Enjoy life!

Wow’ I’m from Atlanta too" Dr . Charles Moore @ Emory Hospital Clifton rd. Did my surgery. He’s a base skull Surgeon. They did my left side as well in 2006" He would only do 1 side at a time. So if you went into a stroke during surgery tour chances of survival is better. I also had intra oral approach as well" I had a veryssuccessful outcome. With about 3 months to truly heal. Now my right side is problematic. I wonder if Dr . Moore is still there? Wishing you a speedy and Healthy recovery!

Dr. Moore doesn't do Eagles surgeries anymore. He asked to be taken off our list.

Thank you Ronnie and Dee! Dee, Dr.Charles Moore is still in the group, but he no longer operates on ES patients - you will be sent to Dr. DelGaudio instead. He’s a great Dr though. Very nice. He only wanted to do 1 side at a time as well. Before my surgery I told him I was “fine with him doing both since he would already have me out haha” and he assured me that he would only do one at a time. I am now SO glad he only did one. I definitely need the right done as well but I can’t imagine having the pain and swelling of both at once.

Ronnie, thank you for sharing the thyroid nodule reassurance. It did scare me at first. Mainly because I have had Graves Disease symptoms for 5 years now but every Dr just does thyroid bloodwork and it comes back ok and that’s it. My aunt was on thyroid meds for years that didn’t help her and they wanted to remove it but she refused. Do you have thyroid issues our just the nodules that went away?

Hi Julie - tomorrow will be one week since surgery for me. Yes, you will be in pain afterwards but make sure they give you liquid pain medicine and it helps tremendously. Make sure you have enough for every 4 hours for 2 weeks. (some require less - after week one you really will need it only as needed). I started taking ibuprofen today and I can’t believe how much it’s helped. Drink plenty, use ice in mouth and on neck and that helps a lot. Liquid diet is a must. No chewing. This is all advice based on intraoral surgery.

Oh no did they give you a reason? Are they just going to reschedule?

Hi Heather, I new here and have a couple of questions. Did you have to have your tonsil removed first then this procedure? I was diagnosed this week and can feel the bone in my right tonsil. I can't imagine having this done at one time. I also have TN which kind of complicates things for me because the nerves are very close in that area. I am just trying to find information from a patients perspective of how this surgery goes. I don't think the doctor wants to do it b/c of the TN issues which he said could make it worse. I only had a regular CT scan and the doctor palpated the area. I am not sure why they would not do a 3D scan...oh well, I guess this is where it starts...I have no other symptom except feeling like there is something in my throat which drives me nuts. Thanks for any info.

Dr. Del Gaudio did my surgery as well, in July, on the right side(external). I have since moved to La and will be having the left side done this Wednesday. I really wish he could have done this side also. I hope your recovery went well and congrats on the "quit smoking"!

Shoppergirl, my tonsils were removed when I was 13, therefore I can’t really advise on that. I do know normally if you have ES and still have your tonsils they will remove it/them in the process before removing the styloid.

The process of surgery depends on the location and length of your styloids and whom your surgeon is. Is your Dr knowledgeable about ES and have they done many of the surgeries or are they referring you to someone else?

Sweet C, thank you! I have quit and feel so much better! Good luck on your next surgery! I hope this surgeon is as skilled as Dr. DelGaudio. Will this one be external as well? Were you having symptoms and decided to go for it? I have the same length on my other side that will need to be removed one day but I guess I just wait for symptoms to know when to have the other side done? For now I am still healing (fast too!) & have a cancer biopsy set for the week after Christmas on the nodule they found on my thyroid. I have been very pleased with Emory and am happy to travel to get the right care!

HeatherB, my doctor does not deal with ES he is head and neck cancer. He has done one. I think there may someone at Duke that has more knowledge about and will try to get their input. I can see this will be a process. I have more Dr's visit's to go b/c they want to better understand how this could effect my TN situation. It least it is good that you already had your tonsils removed as I can not imagine what having the both would be like....

Shoppergirl, what is TN?

Heather B said:

Shoppergirl, what is TN? Trigeminal Neuralgia