ES specialist in Utah?

Symptoms and Treatments Doctor Information
1

I was diagnosed with ES by my ENT last week. So far my search for a specialist in Utah has led me to Dr. Aaron Prussin.

Anyone have any input re Dr. Prussin? Or any leads on an expert in Utah?

I’m willing to travel if needed. I got the packet for Dr. Samji and will send that soon to see if I can get a telemed appointment.

2

The only doctor on our list for UT is Dr. Marshall Smith in SLC. I know there’s a note that he did surgery on the thyroid cartilage for one of our members but no mention of styloidectomy. If SLC isn’t too far from you, it would be worthwhile checking with his office to see if he is familiar with ES, & if so, perhaps having a consult with him.

As far as I know, you’re the first person to mention Dr. Prussin. If he’s familiar w/ ES & has done a fair number of ES surgeries (especially the transcervical approach) then he’s likely a good surgeon to consider. Please let us know what you find out about him.

3

I have already seen Dr. Seth Riddle and Dr. Matthew Stephenson. Both are ENTs who have diagnosed me with ES, recommended surgery, and said they had some experience with the surgery. Dr. Riddle recommended transcervical; Dr. Stephenson transoral. Of the two, I would lean toward Dr. Riddle, but neither has done the surgery more than a handful of times. That makes me nervous but maybe it should not be a concern?

Both of these doctors are in Provo. SLC is close and easy to drive to. I’m happy to drive to SLC to get a third opinion or find the right surgeon. Or I can fly to San Jose to see Dr. Samji if that’s a better option. Dr. Samji is within my insurance network. But I’m also fine to fly to anywhere else in the west or even Texas (where two of my children live) if there are better options.

4

If the doctors you’ve seen have a lot of experience with skull base surgery i.e. they’ve been in practice for a long time then doing a styloidectomy should be well w/in their wheelhouse of experience since both are likely cancer surgeons who operate in the area of the neck where the styloids live.

I’d also choose Dr. Riddle because he does the transcervical approach. The most important info you need from him is how short does he cut the styloids (as close to skull base as possible is ideal) & will he remove calcified stylohyoid ligaments that are separate from the elongated styloid if that exists? If you get vague an answer, especially about the styloids, he may not be your best bet for a successful surgery.

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5

Hi!
We have some info about surgery in the Newbies Guide Section (ES Information: Surgery), but suggested questions to ask your doctor are:

  1. How many ES surgeries have they done and what was the success rate?
  2. 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.
  3. 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.
  4. If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
  5. 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.
  6. Will it be a day case surgery or will you need to stay in?
  7. 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.
  8. 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.
  9. What painkillers will be prescribed afterwards.
  10. Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
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6

Thank you! Very helpful.

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7

This is great. Thanks a ton.

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8

I have been to Dr. Prussin. I liked his personality and demeanor. I went to him because 1. I know I have elongated styloids; 2. My pulsatile tinnitus had flared up again; 3. The facial tingling I have had off and on for a few years was getting worse; and 4. My left styloid(?) had begun to stick into my throat at the base of my tongue. Dr. Prussin dismissed my suggestion that all this was because of Eagles…mainly because I reported no pain or majoring swallowing difficulties. He ran a scope up my nose but didn’t look in my throat. He ordered a CT of my temporal bone, found thinning and decided I may have intracranial hypertension and superior canal dihiscence. After visits to an ophthalmologist, neuro-ophthalmologist (with CTA and MRIs of head neck), another ENT specializing in auditory problems and a multitude of tests, an ultrasound of my eyes, a neurologist and a lumbar puncture…the only conclusion that came out of all that was that I had a form of glaucoma and had previously had some “lacunar infarcts” in my brain. I still have flare ups of tingling on the left side of my head and both types of tinnitus and recently have developed lots of tingling and twitching of muscles in various parts of my body, especially legs. The ENT specialist I saw mentioned to me that Dr. Prussin had done a number of Eagles surgeries but I don’t have any more information than that. If my symptoms get worse I do plan to follow up with Dr. Prussin and will do a better job of advocating for myself.

9

I’m sorry your symptoms were initially dismissed, @bkerea66. It’s unfortunate but many of the doctors on our list look for specific symptoms to be present in order to diagnose ES. As we who have ES full well know, the variety & quality of symptoms are multitudinous & vary from person to person. There is no “one symptom fits all” w/ ES! To his credit, Dr. Prussin did cover a lot of bases in trying to help you, but with worsening ES symptoms it would be a good idea for you to check in with him again.

I’m sure you’ve seen on here that pulsatile tinnitus can be a sign of IJV compression so you may want to explore that if you’re able to get the type of CTA scan @trl1964 had. I understand you were turned down previously when you requested that so hopefully he’ll be able to share how he was successful in getting his.

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10

Thank you for your message. To clarify, I did have a CTA of my head and neck and was told there were no issues with the vascular system. However, that was in the neutral position and I was told (probably by the same radiology department) that they couldn’t do it in any other position.

11

Well I would say they aren’t very experienced. They can stop the scan & have you turn your head to a non-neural position then scan again & so on until the various head positions or the ones that specifically provoke your symptoms have been covered.