These 2 styloids will hopefully be gone soon (will post pics when I can) and I can finally feel like a happy adult with good health. I’ve normalized living with this pain for so long; due to just not knowing any better, terrible health insurance, and chasing symptoms. I’ve had ear problems for probably a decade now; pain, compaction, discharge, tinnitus, etc. I’ve also struggled with breathing, dizziness, neck tension, shoulder tension, pain, GI issues, headaches, anxiety, and more. Had quite a few issues in the same general area. I’m 34, and I had a frenectomy (tongue tie release) in December 23’, with 6 months of therapy before and after, and I thought it would solve all my problems. It was medically necessary and did improve my quality of life a lot, but some symptoms persisted. I always suspected I had TMJ, luckily the joints are healthy, so physical therapy treatment was effective. But, again symptoms persisted. Luckily, my DDS did this CT Scan and commented about the styloids. I kinda kept it in the back of my mind for a couple months, but as symptoms honed in more to my neck I searched online and luckily found this forum. I’m excited that treatment is pretty direct, has good outcomes mostly, and there are enough knowledgeable doctors. So, just curious if anyone has seen Dr. Purdom in the past couple of years and any long term outlooks overall? I did send his office the list of questions and my CT photos; I’m hoping he confirms diagnosis and we can schedule surgery sometime in September. I’m so excited to have hope of feeling healthy for the first time in my adult life
Hi @Andy89316! Welcome to our forum! I’ve updated your account since our system failed to do so 
& now you can post images.
A number of our members have been diagnosed w/ ES or at least had elongated styloids noted by their dentists after having a panoramic x-ray or CBCT scan. I’m glad your dentist recognized that what he saw in your scan was not normal.
I look forward to seeing your scan image when you post it.
For most of our members who have good outcomes from surgery, symptoms remain gone for years (hopefully their lifetimes!). I had my surgeries in 2014/15 & for the most part my nerve pain symptoms are still gone. Occasionally a styloid will regrow if it hasn’t been cut back short enough, & some people develop excess scar tissue from the surgery that irritates the nerves, but in general, a good outcome stays good for a long time.
I’m sorry I don’t have any experience w/ Dr. Purdom so I can’t help you there.
They look pretty big, so will be good to get rid of them!
If you’re having both sides removed at the same time then swelling can be quite difficult, so you could ask about a steroid prescription to help with that, or some doctors do put drains in. If you don’t have either of those then you would be wise to do lots of icing! It’s a tougher recovery to have both done at the same time, but some people like to get it over and done with!
I had a quick look, I guess you did too, but there’s only one mention of Dr Purdom in the older discussions, & no mentions of him recently…hopefully somebody else can give you some info about him.
Let us know what you hear from him!
I agree w/ @Jules! Your styloids are “substantial”. The right one looks a bit thick & has a nasty little pointy area at the tip & the left one is longer but significant. You should feel much better once those are removed.
I just spoke with Dr. Purdom’s nurse, she said he has only done like 2 surgeries for ES in 20 years and referred me to KU Med. I did reach out to Dr. Krempl at OU Health and the receptionist said ES is a specialty of his!! So I am having a referral sent there and calling a few other doctors in nearby states.
Dr. Krempl has done surgery for several of our members & I think their outcomes have been good so he would be someone with whom you should at least consult. I’m glad Dr. Purdom’s nurse was honest. Even though ENT skull based surgeons do operate in the area of the neck where the styloids are so “know the lay of the land”, it’s still best to see a surgeon who has done many styloidectomies as the chance of getting good results is higher.
Yeah, her honesty was great. I’m a little nervous about Krempl, since the notes don’t seem to indicate he does VES; I believe I have symptoms of both. I am going to work with my primary care physician to get the dynamic CT scan with and without contrast soon. I’ve started to look into all the Drs mentioned for VES; Hackman, Hepworth, Constantino, Nakaji, Lawton, and Fargen. Most are in network for me, but I’m in KS; I’m committed to get good treatment though! What states is Fargen in? I’d say I’m leaning towards Hackman, since he is willing to do both at the same time, granted like 3 months between wouldn’t be the worst. I can take FMLA and short-term disability from work; long term (6+ months) is not ideal.
Fargen like Hackman is in NC - Fargen is in Wake Forest, Hackman is in Chapel Hill.
If you do have VES, you’d be safer going to Hepworth, Nakaji, Costantino or Coniglio (the latter two are both in NY). Hepworth is in CO & Nakaji is in AZ. The reason is that though Dr. Hackman cuts the styloids nice & short, he doesn’t do actual vascular decompression surgery but relies on taking the styloids off the IJV(s) to allow compressed IJVs to open. Unfortunately, compression is not always solely the fault of the styloids. The transverse process(es) of C1 can also be involved, or a nerve (the accessory nerve is one we’ve heard of being the culprit for several of our members), muscle, scar tissue, or another vascular tissue. The doctors I’ve listed above would go the extra distance to make sure any other compression source (besides the styloid) is also dealt with. Dr. Lawton has been inconsistent in his willingness to do surgery for our members whom he could have helped so I wouldn’t rush to see him. I know Dr. Fargen does ES surgeries now, but I don’t know about vES. He learned from Dr. Hepworth so that gives him good credentials in my mind.
Most people can go back to work, at least part time, a couple of weeks after surgery. We encourage easing back into work or trying to work from home at first where you can take a break or a snooze if need be when you get tired as fatigue is a consequence of ES surgery that can take a month or more to recover from.
Dr Fargen is very knowledgeable about VES I believe. I hope that you’re able to get in to see one of the other doctors without having to wait too long @Andy89316 …
Thank you Jules, I will add him to the list. I am planning to contact all of them on Monday, along with Dr. Keith Sale at KU med (reading his reviews now, and he is the most convenient by far). But, I am meeting my PCP this week and requesting dynamic CT scan with and without contrast, in order to determine vascular or not; I’m pretty sure, but I want the proof. Overall, I want the right surgeon, so if I have to travel I have to travel
@Jules @Isaiah_40_31 . I am reaching out to all the VES surgeons today to know where to send imaging and such. Im not seeing them all on the Drs list eventhough they are talked about a lot, so I’m not sure of their contact info. Constantino, Coniglio, and Fargen are not on the list. I have called 3 today to get information how to become a patient. Got a list of imaging to get done and meet with my PCP tomorrow to get it all going! I did find all the contact info online
Drs. Costantino & Coniglio are on our Doctors List under New York, & Dr. Fargen is on the List under North Carolina. I’m sorry you didn’t see them but am glad you found their contact info online. Good job being resourceful!
@Isaiah_40_31 @Jules . Hi, is it okay if I tag you two for questions instead of creating new threads? I have imaging scheduled for 2 weeks from now. How long between VES surgeries do people usually wait if they need both sides? What is the recovery time? I kind of work a physical job and I can’t have too many restrictions. Was getting diagnosed difficult? I am seeing an ENT next week simply for the diagnosis, my PCP would not, so the imaging Constantino needs is covered by insurance. I will take my CT Scan that show the styloids and my list of symptoms, which is like 30-40 lines long. Thank you
Feel free to tag us & keep this thread going…It varies with how long between to wait surgeries, but 3-6 months is a rough idea to give your body to heal…Recovery time varies too, but if you do a physical job, then probably a month to heal properly? I did some lifting with voluntary work, I took 4 weeks off, it’s surprising how much lifting impacts the neck muscles…most of the doctors underestimate what recovery is like for this surgery!
Probably a good idea to stick to the main symptoms which affect you, you might not have that long for your consultations- one of our members said that she felt if she talked about everything sometimes doctors were frightened off by that- even the experienced ES doctors don’t always realise that variety of symptoms which ES can cause!
Ditto to everything @Jules said. Please keep us in the loop as you get your imaging & have your appointments.
@Jules . Not much to update today. Saw an ENT that is familiar with ES, said he just removes a portion as treatment. Told him I was going with imaging to check for compression. I am calling Constantino tomorrow to try to schedule the telehealth visit. Just curious, if the only way to see Vagus compression via an ultrasound? I have lots of symptoms that line up with it not working well. Just wondering if I need to mention it to the Dr, or he will see it when operating, or needs to see it in imaging. I may look into Nakaji since I’ve read Constantino does the same thing for everyone and cuts some fascia, but I think Nakaji wants in-person consult and obviously folks are getting good results with Dr. C. I will update after imaging next week, thank you
I think you meant internal jugular vein compression since you went on to discuss Drs. Costantino & Nakaji? Just don’t want to assume anything.
A dynamic ultrasound of the IJV is not the only way to see IJV compression. Usually an ultrasound of the IJV is a follow-up procedure once suspected compression is seen on a CT w/ contrast. If you can get a CT done dynamically i.e. w/ your head in different positions, & especially in the position(s) that make your symptoms worse, compression, if it exists, will most likely be visible. Also ask for the CT scan to include some 3D images as those will help you better see what’s going on in your neck.
Other means of seeing vascular compression are getting a CTA/V or an angio/venogram which is very invasive so the scans are preferable.
Back to the ultrasound topic - an ultrasound, done w/ the protocol given below will show the flow rates of the blood at certain points along the IJV between the skull base & collar bone. Readings above 50cm/s are considered to be indicative of vascular compression. Usually the flow rate is low above the compressed area & high below it. Unfortunately, there aren’t many radiology labs or doctors who measure the blood flow velocities along the course of the IJV. When I had my initial dynamic IJV ultrasound done, the doctor had the US wand in just one place on the IJV & had me move my head in various directions then told me all was well. He didn’t measure the flow velocities nor did he check blood flow at more than the one point. I later found out I had bilateral IJV compression.
Dr. Hepworth has the best protocol for IJV ultrasounds: https://forum.livingwitheagle.org/uploads/short-url/xIaPhqZNBDZsGQdKu2q37yVJD2t.pdf
I believe Dr. Nakaji does telehealth initial consults. It would be worthwhile calling his office to make sure. As you noted Dr. Costantino does cut some fascia & removes part of the digastric muscle as a routine in his decompression surgeries. I don’t know of any other vES surgeons on our list who do those things routinely.
Unless something has changed, Dr. Nakaji does not do telehealth appointments.
Vagus nerve compression (if you did mean that & not IJV compression) can’t be seen in imaging, the only way that nerves can be seen as far as we know is with a special MRI called a FIESTA MRI, but not many places do that…usually it wouldn’t be seen until surgery, and hopefully it will be safe to move the styloid away from it & remove as much of the styloid as possible.