I’m so pleased that you’re able to see Dr Hepworth, and I agree with @Isaiah_40_31 that it’s not worth trying to get any more scans, leave it to him to read the ones you’ve got & order more testing…re the CTA/ CTV, the process is giving contrast dye, & taking the CT images as it goes through the different blood vessels, so a CTA will time it to take the dye going through the arteries, the CTV through the veins. It may be that some of your images will show the venous phase depending on the timings if you’re lucky…
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Thanks guys, so I ruled out a csf leak today by doing a full spine and head mylegram. I don’t have very much to rule out at this point so I am laser focused on my ES. I brought up ES to my interventional neuroradiologist (Dr Pannell with UCSD in San diego), and he actually went ahead and ordered a CT venogram based on my neck CT. But other than scheduling that we have not discussed ES. Should I go ahead with that CT venogram or wait until I see Dr Hepworth? I did not mention to him I am seeing Dr Hepworth because I don’t have the in person date scheduled yet, just the consult with his PA.
Another random question, how important is styloid length in symptom severity? I’m at 2.7 on the left and 4.3 on the right. I am having trouble believing those lengths could cause my incredible pain and symptoms when there’s people with much longer styloids that don’t have any or have much less severe symptoms.
Thanks!
@kline - It’s good news that you don’t have a CSF leak & also that Dr. Pannell was willing to order a CT venogram for you. If you can request that it be done dynamically (head turned in different directions i.e. left/right, up/down, etc), that will give the most accurate results. Also, ask that they include 3D images of your styloids in relation to your IJVs especially at the C1 & C2 levels. It seems many radiology clinics won’t do dynamic scans though they aren’t difficult to do so we don’t understand their hesitation.
Yes, do the CT ahead as the results will provide useful info for Sarah & Dr. Hepworth.
I’m surprised you weren’t also scheduled for an in-person appt w/ Dr. Hepworth at the same time. The usual protocol w/ that office is a patient sees NP Sarah Reynolds on Tues & Dr. Hepworth on Thurs of the same week. The gap day is for any additional scans Sarah orders or for a vascular ultrasound to be done to measure the blood flow velocities at certain points along your IJVS. This is so Dr. Hepworth will have all the results & more complete information before you see him. You should call tomorrow to get your follow-up appt w/ Dr. Hepworth so you can see him while you’re in town. I ended up having to wait a week to see him which meant hanging around in Denver during that time. Thankfully, I have friends in the area so didn’t have to pay for lodging.
Length is only one feature of the styloids that can cause symptoms. Shorter & even normal length styloids that are extra thick, curved, twisted, steeply angled, very pointed, etc. can also cause the same symptoms including vascular compression that the elongated styloids do.
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@Isaiah_40_31
Well I am doing a phone call with Sarah first, then scheduling the in person visit after that. I will aslo ask her if the CT venogram I have scheduled is sufficient, I guess we’ll schedule ultrasound or whatnot as well that way we will have everything ready for when I fly out there in person.
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Aha! You’re having a telehealth appt w/ Sarah. Now it all makes more sense. Thank you for the clarification, @kline. They scheduled my appt w/ Sarah in person. Since Dr. Hepworth started his private practice on 8/1, some things have changed in the way appointments are handled. I guess that’s one of them.
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I’m glad that you’ve made contact with Dr Hepworth’s office, it sounds a good idea to check when you have your phone call with Sarah about the CT…I’m glad that you don’t have any CSF leaks, & the Dr Pannell didn’t dismiss your ES concerns!
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I have my in person appointment with Dr Hepworth next Friday, and I am getting the CTV and ultrasound the same day, I am very, very excited. So, I will have a CTV with contrast, ultrasound, and regular neck CT with contrast, it sounds like I’ll have a pretty complete imaging profile for him to review, maybe a catheter venogram would be the only thing I am missing, but would only be done in unique circumstances?
Also, can anyone comment on some of the negative reviews of Dr Hepworth online? I was a bit nervous seeing some people complain about their outcomes. For that reason I was also going to get an opinion from Dr Hackman.
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Scheduled for surgery with him on Monday.
Very nervous…
Praying it helps or at least doesn’t make me worse…
Good luck, please keep us posted! I think the odds are in your favor, just based on the literature I’ve seen, ES surgery is highly effective.
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I don’t know all the Doctors in “the group” or the list of the 19 things they are looking for but this post might give you some confidence from someone who just had the surgery with Dr Nakaji. Hepworth is in “the group”.
U2 has a song called Beautiful Day. I play it when having a tough time to remind me to appreciate small things.
You picked a good Doctor. It’s all in his hands now. Good Luck.
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@kline - I’m glad your appointment w/ Dr. Hepworth is coming up soon. Dr. Hepworth will refer you for a catheter venogram if he feels it’s necessary. Often it’s not. He has a specific vascular surgeon he refers his patients to & that doctor knows Dr. Hepworth’s angio/venogram protocol so does the testing in the way that gives Dr. Hepworth the best information.
I haven’t read any of the negative reviews about Dr. Hepworth’s surgical outcomes, but I will offer you this - no surgeon has a 100% success rate with surgical outcomes. It seems the more complex the surgeries a doctor does, the more likely there will be patients whose outcomes aren’t perfect. Please bear in mind that some people report a poor outcome before giving their bodies adequate time to heal from surgery. ES surgery especially with the added complexity of vascular compression can take 6-12 mos or more for full recovery. Anyone complaining about a poor outcome in less than 6 mos post op is most likely still healing.
In 2023, I went to Dr. Hepworth’s ofc with a friend as her medical advocate. She was there for IJV decompression surgery. While we were awaiting her appt. we talked to a couple who were sitting across from us in the waiting room. The wife was in tears as she described the very complex surgeries Dr. Hepworth had done for her involving ES & vascular decompression & explained that they had saved her life. She was extremely grateful as was her husband. I have never forgotten that.
@JugularEagle made reference to “the group” (of doctors) who have researched, practiced & refined procedures for doing vascular decompression surgeries & who are now training other doctors to do the same. Dr. Hepworth is currently in HI working w/ Dr. Hui & training doctors there. More locally, he has worked w/ Dr. Damrose at Stanford University Hospital & trained him. Slowly but surely there is a growing body of experienced surgeons who are doing vascular ES surgeries especially those involving IJV compression. We are so thankful!
Here’s the link to the Venous Congestion Webinar which has been discussed on our forum many times. It will introduce you to the core group of doctors who’ve made it their life’s mission to help people with vascular outflow issues:
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@kline , I’m UK so have no personal experience with Dr Hepworth, but I second all that @Isaiah_40_31 says about the complex surgeries; we have seen quite a few members here who have very complicated medical conditions & often the surgery may only be part of what’s needed in a long journey…If you do have vascular ES then seeing a surgeon like Dr Hepworth is a good idea as he is very knowledgeable. Dr Hackman sounds a very skilled and respected surgeon too, & has done many successful surgeries for members, but he doesn’t work with the vascular surgeon like Dr Hepworth does, nor does he do all the vascular testing before surgery.
I think if you’ve been able to get an appointment with him go for it, there are so many who’ve been waiting a long time to see him!
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I wanted to try to answer your question regarding your concerns with TMJ and you also mentioned migraines, etc. I too experience, extreme jaw, pain, migraine, headaches, ear, pain, neck, pain, back pain, extreme dizziness upon standing or walking anytime I turned my head to the left or right I would lose my balance. I still do that to this day. I had surgery on the right side in 2021 and then again just this past October 21, 2024 on both sides through the neck. I went to the dentist and found that I had no issues with TMJ, no issues with my teeth or jaws whatsoever. Not even a cavity. I went to a neurologist and took medications for migraines that did not work, so I stopped taking them, I experienced extreme anxiety and still have anxiety somewhat to this day, but I am recovering from my surgery and hoping that that will also subside. There are people on this site that know much more than I do, I can only tell you my experience. I know the surgery is expensive, the recuperation. Is also intense if you get both sides operated on at the same time, but it’s better than paying for two different surgeries. My first surgery did not work on the right side and three years later I had to have it done again. I will tell you that after my surgery, even now that I am recuperating, I am experiencing less and less of my symptoms of jaw, pain, and ear pain and migraine headaches. I still have issues with swallowing and having stabbing pain in my throat when I swallow. But, it has also subsided. I was also told after my first surgery and I returned because of a recurrence of the symptoms that after having ES surgery, there is no record of anyone having a return of symptoms. I was shocked, because I try to explain that I don’t know what their statistics are, but I am having a recurrence of ES on the right side. I was not believed, and prescribed gabapentin for the pain and I received one prescription and then a nurse told me that everyone in their brother wants that medication, insinuating that I was a drug seeker. I am 68 years old and a retired professional, and have never been a drug addict or alcoholic. it was offensive, and I knew, based on the fact that I had ES that the right side was still an issue. Over a year and a half later I was finally able to get surgery and they did discovered that the right side needed additional surgery. I had to fight to get a CAT scan and have it sent to the initial ENT surgeon who originally diagnosed my ES. Often times ENT’s/neurologist/other specialist will assume that you are having psychosomatic symptoms. Thankfully, I have a great surgeon and he was able to diagnose and do the surgery on both sides. I guess my point here is that you should likely take the advice of some of the people that seem to have a great deal of knowledge regarding getting an ultrasound and determining all of the specific issues you have surrounding ES. I just wanted to let you know that you are on the right track and don’t let anyone tell you that your symptoms are not real. Keep fighting and peace!
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Thank you so muchbfor your story.
I have seen every kind of doctor as well.
I have developed severe depression, anxiety and panic, as I have been like this for 5 1/2 years.
I just don’t know whatvto do as every procedure I do has made me worse, not better.
My wife wants me to not do anything else and just try and survive the best I can.
I know that it’s extremely difficult and has a spouse, I’m sure my husband has dealt with a great deal related to my ES. However, most people don’t understand the various symptoms that you can experience with the S. It can become debilitating. I hope that you will keep fighting and try to Make as many phone calls as you can possibly make to speak to people regarding your symptoms and your suspicions that you may have ES. I don’t know your story, however, if you’re experiencing the symptoms that are discussed in the guidelines on this website, you can let people know that you’re experiencing symptoms that you believe may BES and ask if they are familiar with the diagnosis. Some people get their diagnosis their a dentist, some through ENT, that’s where I got my diagnosis and others through Neurologist. Get a copy of your CAT scan and see if you can send it to various specialists. There is a list of specialist on this website that are familiar with ES, look at that list as well. I know your wife is probably frustrated and it’s quite understandable, however, After I had my surgery, from which I’m still recuperating, so many things changed, anxiety is much improved and much of the pain as well. I wish you luck and let me know how you’re doing. Tell everyone your story on this website and maybe you can get some people who know more than I do, to give you advice. Don’t stop! Peace!
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Unfortunately, I am much worse after the ES surgery.
I was hoping for some relief, but for sure never dreamed I would be so much worse.
Thanks for your support.