Hi,
I have my very first appointment with Dr. Bunnell at USF Jacksonville, FL May 26. I was told to bring CT scan report and disk. Does anyone have advice on which questions to ask etc…? I have several symptoms that I am not sure are even related to ES but plan to tell the doctor just in case. Has anyone had a plastic surgeon in the OR during surgery to help with minimizing the scars?
Thanks in advance for any advice for the first appointment.
I’d suggest sticking to the main, common symptoms of ES to start with- it’s been suggested that mentioning all symptoms, especially ones that are more rare can possibly put doctors off (some are a bit sceptical of some ES symptoms)
You should ask if the doctor does external or intra-oral surgery- there’s detailed info in the Newbies Guide Section, but external surgery usually gives the surgeon a better view so they can remove more of the styloid, gives better access to avoid nerves & blood vessels, & you’re less likely to get an infection.
You should also ask how much of the styloid they plan to remove- ideally it should be removed back to skull base, but as much as they can safely is a good answer. If a doctor says that they’ll just take a bit off or remove it back to the ‘average’ length, then that might not be enough to stop symptoms. And you could also ask if they’ll smooth off any styloid remaining.
Most surgeons monitor the nerves during surgery to ensure that they’re not stretched, so you could ask if they do that.
And you could ask about post-op meds for pain relief, & if they give anything for swelling. Not all surgeons do prescribe steroids, but it can help with swelling.
I think I can only recall one members who had a plastic surgeon do the surgery. Usually the surgeons try to do the incision in the crease of the neck so that it doesn’t show- that’s something to ask about too.
I hope that your appt goes well- let us know how you get on!
Is your appointment specifically for an ES diagnosis? I don’t have much advice but I would just suggest maybe asking them what else it could be also. I know for myself I figured out I had ES and then pursued that diagnosis and received it (x3) however I wish I would have inquired as to what else it could have been with those specialists. When you see an expert they will be more willing to diagnose and treat which is great, but it’s also important to get the full picture. I’m only saying this because I had surgery and haven’t found a bit of relief so while I have/had elongated styloids I don’t think it was eagles.
If surgery comes up make sure you know how it will be performed, expected recovery time, what meds they will prescribe, time off work etc. I hope they can provide you the answers!
one_day, I’m sorry you still have symptoms but your recovery is still in the early stages. Additionally, if you have bilateral ES & have only had one styloid removed, your symptoms could be coming from your remaining styloid. Crossover symptoms from one side to another are not uncommon. Many people on our forum have had to have both styloids removed before they had full relief from their symptoms. My surgeries were 9 months apart, & though my remaining symptoms got really bad during that time, it was worth the wait because now they are gone. This is meant to be “food for thought”.
Thank you! Those are all great points to go over with the doctor. I have jotted them down and will go over them with him. I’ll post the results of the appointment next week.
Hi there, I’m in Orlando and I am seeing a recommended doctor there for my surgery in June. He uses the inter-oral approach so no scarring. Dr. Bruce Haughey comes highly recommended.
I also will be taking the advice of a long ago post about icing a lot for swelling. They had purchased a cooler that attaches to an ice pack. I guess they use it in sports medicine. So no running low on ice packs. I saw it on Amazon for a little over $100.00.
I would ask how long the styloid is and how close it is to the vagus nerve and carotid artery. I am researching why they calcify. It may be due to inadequate calcium absorption. I have calcium deposits elsewhere as well. I am now following a protocol so remedy this.
Metabolic disorders are a known cause of ES- we’ve had quite a few members who’ve had calcium issues too- bone spurs etc. There seems to be a link with Vit D alongside the calcium.
Just a note- the doctors wouldn’t be able to say how close to the Vagus nerve the styloids are as this wouldn’t show on a CT.
I hope that your surgery goes well in June! Have you got a definite date?
Katflorida,
Thank you so much for the suggestions. I appreciate you taking the time to answer me. I am very bone spury. I had one removed from my shoulder that was cutting into my rotator cuff and one removed from my ethmoid sinuses.
I’m so happy you are having your surgery in June. I hope you feel better after! Let’s keep in touch since we are both in FL.
Thank you for sharing your doctor choice & your conclusion about the possible cause of ES. The more information shared the more that people are helped.
What is your surgery date? We’ll look forward to hearing how your surgery goes. You know we’re here for you if you have questions or need support.
Thanks, June 18 for my left side. In the fall for the other side.
I also take vitamin k2 as mk-7. A friend with similar issues researched this.
I had an mri 3d thing at the Cleveland clinic that showed greater detail. Im still paying for that on the installment plan! I wasn’t happy with the 4 hour drive there in West Palm and their poor patient connections. It’s through this site I found the doctor in Celebration, just south of Orlando. That’s where I got a second opinion. I believe God’s got this all.
That’s good you’ve found a closer doctor…Was it the FIESTA MRI you had? I’ve heard of it but not of anyone having it, they sound really detailed! Obvs expensive though!
God bless & will pray for your surgery to go well
I think it was that. It had to be done at the Cleveland clinic. Orlando didn’t have the machine the doctor said.
Interesting. I had not heard of a Fiesta MRI but have had MRI Neurograms - ie: specialized mri’s that read nerves -cannot be seen on regular MRI’s. They are not cheap and not many in the US. This Fiesta MRI seems like another specialized one that is similiar.
FYI: Recently, three-dimensional fast imaging employing steady-state acquisition (3D-FIESTA) images have been introduced. The 3D-FIESTA sequences provide much higher spatial resolution and clearer depiction of small structures like cranial nerves especially within the cisternal spaces. The 3D-FIESTA is an ultrafast pulse sequence that produces high-resolution images with outstanding image contrast between the cerebrospinal fluid, vessels and cranial nerves. High signal-to-noise-ratio also makes small structures conspicuous [7], [8]. The 3D-FIESTA sequence has been reported to be a reliable method in showing the retrocochlear pathologies especially in auditory dysfunction such as tinnitus and hearing loss [8].
Thanks so much for this info on the FIESTA MRI, Snapple! I would have eventually looked it up, but it’s nice not to have to!
@Katflorida,
Your date is on my calendar. I’ll be praying, too! Glad you have a plan for removal of both styloids. I advocate waiting longer than 3 months (current recommended spacing between surgeries) for the second surgery as a space of 6+ months allows for more complete healing after the first surgery & in my experience, perhaps a quicker recovery from the second surgery. So glad you found a doctor closer to home.
Thank you!
I agree. I was offered the second after 6 weeks!! But it’s a lot for our bodies to go through.
Thanks for replying. My surgery is June 18th.