Chicago ES update and procedure scheduled

Hello,
I’m back with an update. I had my surgical consult yesterday and I’m booked for a styloidectomy on 3/31 in Chicago. Again, the doctor specializes in head, neck, and cancer surgeries so I’m feeling pretty confident. Both intra-oral and external approach along with a more conservative approach was considered. She feels confident in the external approach in an effort to minimize infection risk and also due to the fact that I have large tonsils (she didn’t suggest needing to remove just indicated large tonsils would make it harder for visibility purposes). She was open to both options!

She offered a ton of re-assurance, said the incision would be done along my neck crease line, and would offer suggestions on scar healing to make it even less visible upon completion. She said I could go home that afternoon depending on how I’m feeling or the next morning if I wanted. She thinks recovery could be no longer than a week and could return to work (I work from home during COVID) if I wanted sooner. She’s left me hopeful and I’m praying this provides relief. She will be using monitors during the procedure to help visibility around nerves, arteries, etc. I will plan to take additional time off work if needed to not rush this recovery.

I’ve taken some time off work that week and will be recovering with family at a nice nearby hotel post-surgery to help try and make an unfortunate situation a tad better. I will then make my way home to hopefully see more results.

At this point, thinking about the scar and how it will appear and the 2.5hr surgery but hopeful that this is the “beginning of the end” which were the doctors exact words. Does anyone have an update on how long scar healing took for them?

I plan to share an update post-surgery for others who may need a Chicago doctor recommendation assuming all goes well!

Hi! Congrats on getting a surgery date. May I ask which doctor you are using? I’m very close to Chicago and I’m struggling to find anyone near by. I have an appointment in 2 days with Dr. Cundiff who is on the doctor list, but I can’t actually find and posts that talk about him on here.

Also what are your symptoms?

Thanks!

Hi Rachel1220,

How exciting that you have surgery coming up so soon & even more so that you’ve found a doctor not on our list who is willing to do it AND externally! All the details you’ve mentioned about how she will do the surgery are what many of us have experienced w/ our external surgeries so it sounds like you’re in very good hands. I will caution you though that one week for recovery is a bit on the conservative side. Many of us have found that it was at least two weeks before we could entertain the thought of going back to work or other activities & in some cases even longer. It took two months for me to get my energy back fully & feel “normal” again.

Keeping ice packs at the ready & using them 15-20 min on & at least 45 min. off will help you a lot after surgery. Sticking w/ your prescribed pain med schedule, even during the night, is important in the first week. Days 3-5 post op are when the swelling will be the worst & also the pain. Plan to take it especially easy those days & ice, ice, ice. Also, sleeping/resting w/ your head elevated to 30º (almost sitting up) will help reduce swelling in your neck & throat. My doctor Rxed a pain med & a course of prednisone to help w/ post op swelling. The prednisone made a huge difference for me, but many doctors don’t offer it. Finally, Rx pain meds will clog your system so be prepared w/ a stool softener & laxative & start taking them daily after surgery to prevent another uncomfy problem.

Another thing to consider is if you have bilateral ES & only one side is being removed, some symptoms may remain which are caused by the remaining styloid. Don’t make the mistake of thinking your surgery was unsuccessful because of this. The symptoms caused by my remaining styloid ramped up after my first one was removed, & it wasn’t till after my second surgery that I really got my life back.

Most doctors do an amazing job of making external incisions that are nearly invisible once healed. It does take several months for complete healing to occur. There are also many images of incisions in various healing stages which our members have posted. These will likely show up in the post op discussions which you can find using the magnifying glass icon above.

Here is a link for some suggested items to purchase for post op care. You may have a sore throat & a stiff jaw for a bit after surgery so plan on a soft diet to start:

Overall, you have a good post op plan in place. I’m so glad you have family supporting & taking care of you. We’d love another doctor’s name to add to our list so will look forward to your post op update. I’m putting your surgery date on my calendar & will be praying for a wonderful outcome. :hugs:

Hello!

Thank you. I’m of course nervous but trying to be hopeful giving the consult from yesterday. I’m about 30min from downtown so I’m using doctors associated with Northwestern. I was actually referred to two who the team thought would be best suited for ES. Dr. Stepan and Dr. Baird were the referrals given to me both in Chicago.

I also tried to look up Dr. Cundiff but couldn’t find any information. I was glad when ENT team could make recommendations. I had originally seen Dr. Bove but he isn’t performing procedures at this time.

My experience has been wildly uncomfortable since late December and I sit on the 7/8 scale of discomfort when swallowing most days. ES has mostly affected my throat and ears but no pain, fortunately. Ligament can be felt by touch when swallowing outside of neck area. It’s very uncomfortable! I’ve experienced throat fullness, ear popping/crackling, nausea/dizziness, jaw tightness, globus sensation, flare ups, and so many others in the two-month span. I’ve had lot of testing to rule out other things! I can keep you posted on how things go in the coming weeks. Just hoping this is the solution I’ve needed. What are your symptoms and how long have you been experiencing them?

Has your surgeon performed an ES surgery before?

I actually don’t even have a diagnosis yet, but I’m hoping to at least get over that hurdle on Friday and then I can start finding someone to do the surgery. I’ve had various issues for the better part of a decade now, but the issues that are clearly in my throat I’ve had for about 13 months. 9 years ago I was diagnosed with BPPV and then fibromyalgia, GERD, and then POTS. My symptoms that I attribute to probable eagle syndrome is a very distinct poking sensation on the right side of my throat near my tonsil. I also have tinging sensations along my right jaw, cheek, and eye. I get headaches and heart palpitations. I can literally see the bulging when I look into the back of my throat. That side of my throat almost touches my tongue. It started in February last year and is getting progressively worse with not a moment of relief since. I am actually wondering if I have vascular eagles also. I’m really scared right now that something will happen before I’m able to get the help I need.

Please let me know how your surgery goes! I am hopefully I can put this all behind me very soon.

I also feel like the appointment part and not having answers is the hardest part of going through everything! I remember thinking I couldn’t make it between appointments and lots of tears have been shed during this time. I can relate to thinking something worse will happen before getting help. Mine was that my throat would close or couldn’t get a good swallow in. I hope that you have answers soon! I’m sorry you have to go through this hard time. It’s not easy :frowning:

Hang in there! My elongated styloid nears my right tonsil as well. .and I already have big tonsils so this hasn’t been pleasant.

Each ENT has felt inside mouth (both sides) to feel for styloid. Wondering if they’ll be able to feel the poking you’re referring to. Keep me posted on your appointment Friday!! I hope you get some clarity.

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Thank you for the list! I also am preparing for longer than a week to feel best. I do have bi-lateral but left side measures 3cm exactly unlike my right that is at 3.8cm. I am hoping it’s only one side that will cause aggravation in this lifetime… but I have read that other side could present issues as well.

I will plan for lots of ice and a regular pain medication schedule. I’ll need to ask for her to send those in so that they are ready to go before surgery. Also, the pillows positioned in a way that provides some comfort.

Thank you for the good suggestions!

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I think Isaiah has covered lots of info, & it sounds like you’re pretty prepared, so I’ll send you good wishes, & not too long to wait! I think as long as the scar is in the neck crease, it won’t be visible at all, mine were done more behind the ear & only a bit along the neck, but doesn’t show now.
I would just add too that the week’s recover a little optimistic, I’d give it at least 2 weeks, it might be a bit longer, but sounds like you can play that by ear, so that’s good!
Will be praying for you!

Thank you, Jules! All of the replies help comfort me during this uncertain time. I’m hopeful and optimistic but still have lingering thoughts that by some offchance I still won’t find relief. Trying to not let myself go to that head space though. Keep you guys posted!

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@Rachel1220 I’m glad you found doctors in Chicago that are able to do your surgery! I live in the Chicagoland area, and I’m having a hard time finding an ENT that can help move my treatment process along. Will both doctor Stephan & Baird be preforming the surgery? We’re there any tests that you needed (imaging, for example) before seeing them at NWH? I’m hoping for some guidance as I’ve been in constant pain for months, and I believe I am a candidate for surgery.

Do you know if they have performed a styloidectomy? I’ve heard Cundiff is familiar with ES, but I’m only comfortable with seeing an experienced surgeon. I’m not sure if he’s preformed any surgery on ES patients. Any information or advice would be appreciated!

Hello!

I’ll be honest I’m going to talk to my doctor on Thursday about a more conservative approach before going about the surgery. Unlike others I am not in any pain and my symptoms have varied over the course of a few months and slowly had some improve with time. At this point, I’m unsure what the best decision is for me. I’ve had multiple doctors and an oral surgeon tell me that pain is a very large indicator of ES. I could never feel pain when they pressed inside mouth in tonsillar area.

To answer your questions, I had lots of imaging done with Northshore (my doctors and hospitals that I had previously visited) and NWH wanted to re-run there own imaging to get pictures and measurements. However, since both are connected they were able to see notes from my previous scans and MRI. I also ruled out ALL GI issues before going to NWH. Dr. Stepan is prepared to proceed with surgery. There are two other doctors Baird that was recommended to me or Slavin who I came across while on this site. I’d still be interested to possibly set up appts with one or both should I decide to postpone.

I don’t take these decisions lightly and want to do what’s smart and safe! If you’re in pain it might be a good idea to set up an appt with a Chicago ENT to see if you are a good candidate for a CT scan and talk you through different options. I’m happy to answer any other Chicago questions or what my experience has been like.

:slight_smile:

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I actually got my diagnosis from Dr. Cundiff. He said he has performed about 20 of them but he does them intraoral. He removes the tonsil and takes the tip off the styloid. I am currently looking for someone who can do external for myself after reading lots of stories on here. I’m also following Rachel’s post as I may be interested in these doctors.

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Hi Rachel1220,

Just a comment on what your doctors said about pain being a very large indicator of ES. That is not entirely true. There are many people who have ES who don’t have pain. Lack of pain doesn’t mean you don’t have ES. It means you’re fortunate. It’s when pain begins robbing you of the ability to live your life normally that ES must be paid attention to & a proactive treatment approach needs to be considered.

To add to that I would say that pain is actually defined as any uncomfortable sensation. I also don’t characterize my throat as painful, but by definition it is. I do get shooting pain into my ear and under my jaw but I have 24/7 feeling of a cotton ball shoved back there as well as tingling in my tongue. I totally am terrified of surgery, but I have to think this “pain” we have now can only progress. I don’t want to be at the point where I’m ready to off myself over it.

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@one_day Thanks for letting me know how many procedures Cundiff has preformed. I feel as though external surgery would be a better option for me if I am in fact a candidate for surgery. If anything, I’d get a second, or third opinion from his practice.

@Rachel1220 I’ll be visiting my TMJ specialist (he discovered that I have ES) & my neurologist this week to hopefully get some further imaging set up. I’m afraid I have jugular compression and/or occipital neuralgia. My ENT has diagnosed me with LPRD, and seems to dismiss my ES symptoms because he’s focusing on other issues. I know Slavin is familiar with ES, but I’m not sure how much experience he has with ES patients. At this point, I don’t know if I am confident to have surgery in Chicago. I know Samji & Cognetti are quite reputable!

I was actually told by one doctor that they wouldn’t even consider surgery unless I was suicidal with the pain. I didn’t want him operating on me anyway!!

Klinks,

If there is any question about you having jugular compression, you will want to see someone who will remove your styloid all the way to your skull base. Dr. Cognetti leaves a little of the styloid behind rather than cutting it all the way back. Regardless of who you end up seeing, if you need surgery, make sure you choose someone who is willing to fully remove your styloid. This will give you the best long-term results.

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Thanks for the heads up! Hopefully I’ll be getting answers soon to get the ball rolling!

That’s crazy! I mean I get that it needs to be necessary, but this whole process takes so long that by the time it got that bad who knows what could happen. I’ve had times where I would rather be dead already.

Keep strong, you’re getting somewhere & hopefully you’ll find a doctor to help you soon… :hugs:

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