I am trying to decide what type of health insurance plan to select for next year (high deductible vs PPO). I am fairly certain I will need to have surgery and am in the process of making an appointment with Dr. Milligan in Phoenix.
For those of you who have had surgery, how long did the process take from the time you had your first appointment with your surgeon? I’m wondering how likely it is that I will have the surgery sometime next year (2024).
Also, what was it like working with the surgeon? Did they need to do a lot of scans and such? How many appointments were needed before determining whether surgery was the right path forward?
Worth it to note that I know it isn’t guaranteed that Dr. Milligan (or other surgeons) will take my insurance, etc.
Dr Milligan did my surgery this year. He is a fantastic surgeon! I had my L styloid removed. It was done outpatient and I had very minimal pain. He puts the incision in one of your neck creases to minimize scarring. I am doing very well.
It did take a few months to see him and he is retiring in 2024 but I understand he will be seeing select patients going forward and has trained other surgeons in his office “AOC” to continue treating Eagles. I would call about the insurance and see what they take. They use Banner Hospital in Phoenix for a the surgery. I would suggest you use the best insurance plan you can afford and make sure you always ask if all facilities and all doctors are in network including anesthesia. Everyone bills separately. PPO’s are usually the best choice. Ask questions about each plan. Make sure all your doctors you use or want to use are in network. Good luck with everything… I will keep you in my prayers… I hope I answered your questions and did not give too much … I have been a RN many years and used to educating as well as trying to help people with healthcare needs. Happy Holidays
@Rlr286 - Usually the only scan a surgeon needs is the CT scan which diagnoses your ES. Unless there are other complicating factors such as suspected vascular compression by the styloids (which it doesn’t sound like you have based on the symptoms you reported), nothing else is needed.
I hope you’re able to see Dr. Milligan as the outcomes from his styloidectomies have been consistently good.
@elisaac1958 - Thank you for the very helpful information. I’ll put a note regarding his impending retirement by Dr. Milligan’s name on our doctors list. It would be great to get the names of any other doctors he’s trained to do ES surgery so we can add them in his place. If you know who those doctors are, please post their names. Thank you!
Thanks for your response. What are the symptoms of vascular compression by the styloids?
Also, unfortunately Dr. Milligan is no longer taking new patients due to his upcoming retirement. I also called Dr. Hepworth (I live in Denver), but he is not taking new patients currently. I started crying on the phone when the receptionist told me that lol. She said to try again in January or February but I might try to stop by his office in-person this week per another member’s recommendation on a different thread.
I left a voicemail for Dr. Milligan’s nurse asking about doctors he’d recommend. Waiting to hear back.
The receptionist at Dr. Hepworth’s office told me he doesn’t give out recommendations.
I’m so sorry you’re hitting dead ends, @Rlr286. You could try Dr. Samji in San Jose, CA. I know he’s farther away from you, but he’s also extremely experienced in doing ES surgeries. He does initial video consults so you wouldn’t have to fly out to see him. I believe you need to send a hard copy i.e. disk of your images to his office for him to review before he’ll set up a consult with you. The initial consult is 45 min & costs about $600. Many insurance companies will pay all or part of the cost of a second opinion appt., but it’s best to check with yours to make sure that’s the case. Having the consult doesn’t obligate you to see him for surgery. He did my surgeries (for bilateral ES), & I had a very good outcome overall.
You can contact his office to see how far out he’s booking & what exactly you’d need to send to him in order to get a consult set up.
•Dr Hussein Samji, Camino ENT Clinic, San Jose 408- 227- 6300 Camino Ear, Nose & Throat Clinic (one of the most experienced ES surgeons in the US, does external surgery.) Contact his medical assistant Yerelin@caminoent.com for a faster response.
Here’s another doctor listed in CO, but I don’t know how experienced he is:
I just added up the cost of my ES surgery and it was about 24,000 (after the insurance company bargained it down). I definitely met my max out of pocket!
Anthem (purchased as a Colorado person) worked (was in network) for Hepworth, the vascular surgeon (Vascular Institute of the Rockies) and hospital he uses (Presbyterian St. Lukes in Denver).
I had vascular issues (2 blocked places for the left jugular vein, styloid growing into nerves/veins… plus calcified ligaments). I had severe pain on that side from behind the ear going down the neck, ear pain, blocked Eustachian tube, repeat sinus infections, general head pain and tinnitus. The pain in the neck went away right after surgery. It was a varicose vein - a small vein that was trying to take over for the blocked jugular vein.
I needed a jugular ultra sound as part of the diagnostic radiology work up.
It is hard to say how long it takes to get to surgery. I was a patient for 5-6 years before this was unraveled and diagnosed. If you are already on the ES path (was suspected via other dr and tests already done) it shouldn’t take too long to get to surgery (maybe a few other tests by the dr doing the ES surgery).
Hepworth likes to do a month on Brilinta (a blood thinner, taken without asprin) to see if it helps as part of the diagnosis so that added a month.
No doctor wants to do this surgery without cause, it is involved.
I wish you the best. It is sad what a fight it is to get care and what a long road it is. Love to us all.
Thank you Julie! I ended up choosing the high deductible health plan since the overall maximum I will pay is $4,000 compared to $10,000 with the regular PPO. I managed to get an appointment with an ENT (not specialized in ES) on Tuesday, and my PCP prescribed me some muscle relaxers and migraine medication to help me manage my symptoms in the short term. He also ordered a CT scan so fingers crossed I can get that done ASAP. I will be curious to hear what the ENT I see on Tuesday will say and whether he will want to order any additional scans.
Hi Jules! Do you mind sharing what your surgeon said about your styloid and Eustachian tube? I was lucky to get in with Annino in a month in Boston, my ear symptoms are some of my worst. My styloid (I measured myself) is about 3.2 on my problematic side, I’m wondering if it’s long enough to cause ear issues. Thank you!
Remember it’s not the length of the styloid but also how thick, curved/angled, pointed, etc. it is that can cause symptoms. A normal length styloid can cause symptoms if it’s very thick, angled, etc.
Hepworth said (hope I’m remembering this right) the intercranial pressure causes inflammation in the sinus and (I think) more liquid to be produced in the sinus/ear. The extra pressure and liquid cause pain. It wasn’t that the styloid was reaching the Eustachian tube.
Also the inflammation causes pockets that can be more easily be used by bacteria to set up shop. I have had many sinus infections.
I have had 3 tubes in my left ear and the left Eustachian tube dilated 2 times over the years.
My left ear was my worst symptom too (pain, itchy, pressure, under water feeling, lose of hearing, tinnitus) and later was joined by a pain down the left side of my neck. I could not sleep on my left side.
The neck pain was a varicose vein – a small vein bloating up as it tried to relieve the pressure since the left jugular vein was blocked in 3 places.
I am 2.5 months post surgery on the left side (right still has ES).
I can sleep on my left side now. My ear/sinus did flare up over the last month but I had Covid followed by a bad cold and a sinus infection (2 types of bacteria) that I am still trying to get rid of (via antibiotic oral and in nasal rinse).
It could be:
damaged lining in there still, pockets for bacteria.
inflammation still. I need to give it more time and get the right side fixed too.
The tinnitus seems to have switched to the right side post surgery on the left. Others have said getting one side done tends to flare up the other side. Also, I asked someone if rt side ES could cause issues on the left side and he said yes, he had that (I think it was his ear too).
I could have another place bacteria is hanging out???
Hepworth did say my left ear will be a tell. He is hoping it clears up post surgery. Even with all the illness I’ve had during recovery, it is better than it was.
Thanks for the info here Jules. Similarly to you, my ear issue started with an infection, but I actually haven’t had fluid in there since, just a feeling of pressure in the neck/theoat that extends to the ear, with crackling and popping, and palatal myoclonus. My right side is my only issue, though both my styloids are a little over 3 on both sides.
Interestingly enough, on my impacted side, I’ve developed extra painful tissue underneath my mandible around the corner of it that literally pops out from underneath, causing sharp pain. I’m guessing this was caused by inflammation but hoping it can be removed during surgery.
Sounds nasty @etherealcataclysms , I used to regularly get swollen lymph nodes in that area , ear ache, jaw ache, ear pressure…the swollen nodes have been much better since surgery…
It definitely is. I have swollen nodes in the area as well, I’m glad to hear that got better for you after surgery! Would you say the pressure improved as well? I constantly feel like I have a sinus infection in my neck right behind my jaw and under my mandible if that makes sense.
