Hope all is well! Sorry I have been trying to post and I guess there was an accout issue, but that has now been fixed. Thank you Moderators for the help.
I just had a few general questions in regards to my first consultation coming up in a few weeks! Are there some good questions that would be important to ask for my upcoming consultation? I am seeing Dr Chhetri (UCLA) in a just over a month and want to be sure I dont forget to ask anything super important, I am already aware that I have styloids on both sides and that these are what is causing my current symptoms such as throat/ear/jaw pain and general discomfort. I gave my CT with Contrast, MRI, and Pano that showed my styloids along with my list of symtptoms to him this week and will be hearing back soon hopefully.
I have already spoken to his assistant asking if he does external surgery and I let them know this would be a revision on one side (my left) and my right side would be the first time having this operated on. He does both types (internal/external surgeries).
Google drive link - not sure if above link works properly, this contains the whole file. I used RADIANT to view the file:
Thanks in advance!
Also a HUGE thank you to Isaiah for supporting me this whole time!! She has been a huge resource and support to me, thank you thank you!!!
Hi, & welcome to the site!
I couldn’t view the images, so can’t comment on them, but we do have a list of questions we suggest members ask their doctor in the Newbies Guide Section about surgery. Some might not be relevant as Dr Chetri is an experienced doctor, but here goes:
- How many ES surgeries have they done and what was the success rate?
- Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
- You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
- If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
- There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
- Will it be a day case surgery or will you need to stay in?
- Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
- Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
- What painkillers will be prescribed afterwards.
- Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
And here’s a link to the section as there’s some other info in there which might be helpful:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Although if you’ve had surgery before you’ll know about recovery…I guess you need both sides doing? I don’t think Dr Chetri does bilateral surgery, so presumably 2 surgeries for you?
Best wishes, hope your consultation goes well!
Thank you for the welcome and the reply!
I am happy to be an active member now.
Sorry the images were not viewable. I am still trying to figure that part out. Technically challenged… I have sent a few images to Isaiah as she has been super helpful as I was not able to post for some time. But the were screen shots I took from Radiant are of course not all angles and I am learning with her help what views may be most helpful until I the link viewable. Thank you for the questions to ask/bring up for Dr Chhetri, I have added them to my ongoing list. I am sure I will have to prioritize for my visit but I will make sure to have them with me so he has all of them. Yes this will be my second time for the left side as it has grown back. The first tine was intraorally on the left and only shortened by Dr Futran in Seattle. It is bilateral and both sides are bothersome with the left being the worst of the two. The left is fatter and the right is longer. I will attach a few images but I apologize for the angles as I am not great with the 3D imaging, but I have been practicing
I hope I dont download too many
Thank you again for the warm welcome and information
A few more
Hello, I consulted with Dr. Chetri in July 2021 for ES. I wish I could say it was a positive experience, but it wasn’t. Dr. Chetri denied I had ES and I told him my CT imaging confirmed I had it. It was at that point in time that he looked at my scans and told me he was unable to perform the surgery. He said it was “too high up.” I was left speechless. I know Dr. Chetri performs ES surgeries, but I would question how much of the styloid does he remove? How close to the skull base does he take it?
Fortunately, in December 2021 I had ES surgery with Dr. Samji. The severe head and neck and swallowing issues resolved immediately post op.
I wish you the best outcome!
I’m really glad you’re finally able to post on the forum, @Vkaabour! I also had a good experience w/ Dr. Samji so can second what @Jersey said.
Hi and thank you for letting me know. I am worried this will happen. To me as well and sorry he didn’t take you seriously about your styloid. But it may be for the best as it sounds like Dr Samjii did a good job. Dr Samjii has my packet at the moment and are evaluating it. I should be hearing from them this week. I thought it best to have a back up plan and it may be good that I do it seems.
Thank you again
Yes I am thinking you both may be right. Thanks for the extra vote of confidence. Waiting to see what Dr Samjii says. Will post when I find out
That left styloid has grown back pretty long in such a short time! I hope if Dr Chetri can’t help that Dr Samji will!
Yes I hope so too, thank you.
It’s funny I thought for almost two years I was battling an ear infection as the thought of the styloid growing back hadn’t crossed my mind until hubby brought up the possibility. A dental pano soon after he mentioned that showed that it had. First time was a shortening so hopefully this time will be to the base of the skull or at least as short as possible.
You’re welcome. Getting a proper diagnosis and treatment is challenging for ES patients. We’re in it together! Another physician to consider for a consult is Dr. Gregory Lekovic, neurosurgeon, in LA. His website lists ES as a condition he treats. Here’s the link to his website: Conditions treated – Dr. Gregory Lekovic MD, PhD, FAANS
I would have consulted with Dr. Lekovic before making a final treatment decision, but I came across his name after my ES surgery.
I’ll be keeping you in my prayers.
I see that Dr. Lekovic is on our Doctors List, but I can’t find any posts that someone on our forum has seen him, however, we wouldn’t have put him on there w/o a positive referral. It looks like he’s part of the medical staff at House Ear Clinic which has a good reputation so that also bodes well for his expertise.
Thank you for the info, I will keep him in mind for a possible third option. I did take a look at his profile and it does show he is familiar and has done surgery for eagles. I may just give a call for an opinion. More is better at this point. Thank you again
Yes worth a look for sure. Its good to have options, I have seen so many poor people turned away by Drs not willing to help. (non on the list) but it is a real struggle to get a Dr to take it seriously and even consider that its a real thing. Even my own regular MD was a little surprised that it ended up being what I suggested it may be and asked for the CT with contrast. I saw doubt in her face. But now when I see her she is all questions on how I am doing with it. Maybe she will share with others, at least I hope
This is awful Vkaabour! Did Dr. Chetri do your first surgery??? I would NOT go back to him, not even for a hang nail! Had he done the job right the first time, there would have been a better outcome. Once I had my surgery, both at the same time through my mouth, it was a done deal. Once I healed, I was fine.
ES is so hard to live with and doctors who go in and do this surgery need to realize that unless they get to the base and remove everything, there is a possibility of it growing back. I would go to Dr. Samji if he is close enough for you. He’s done several removals.
Best of luck to you and stay close to Isaiah and Jules…they know quite a bit.
Hi, it was not Chhetri, he is one I will be seeing for consult. My first surgery was by a different Dr about 14 years ago. Dr Samjii will be another consult as well. And yes thank you, Isaiah and Jules have been a great help and resource for me. I m thankful for this forum and all that I have learned