So as I’ve mentioned before, I am scheduled for a styloidectomy with Dr. Hepworth on June 22nd. My worst symptoms have eased off. I still have occasional cold sensation in eye, headache and brief shooting ear pain. And brain fog, but different than it was initially. The brutal dizziness is gone. And a cascade of symptoms down the body that may or may not be related. I’m on Plavix. Symptoms get a little worse when I got off, but not horribly. My initial ultrasound showed completely blocked jugular with corollary veins. But subsequent angiography and MRI both reported that jugular was flowing fine.
The reason I need the pep talk is because my brother, an MD, is not super enthused about my going under the knife. Every time I talk to him, he asks about my symptoms. When I tell him they aren’t so bad any more, he says “So why don’t you postpone the surgery?” He’s an anesthesiologist, so he’s in the OR all day every day, and sees everything that can ever go wrong in a surgery. So he’s not trying to undermine me, he’s just concerned. Of course, I haven’t been able to get him to actually talk to Hepworth to get on the same page. Hepworth says it’s warranted. And when I pray about it, I just keep going back to wanting to fix whatever is wrong while I’m young enough and Hepworth is still in practice.
Anyway, does anybody else think I’m crazy to go ahead with the surgery when my symptoms aren’t debilitating?
Well at this point, if Dr H told me to jump off a bridge I’d probably do it. Totally kidding but… I trust him very much as a provider, and my trust in him paid off because I feel soooo much better since my surgery. I think you are in the right frame of mind to go ahead with surgery while he’s still in practice and you’re well enough to tolerate it. There’s no telling really when or how your symptoms might get worse (or not?) For me, it was sort of gradual but also quite sudden how quickly I declined. I went from having a few migraines a month or less, to having constant pain, within the span of a few days. No clue what caused it… bodies are weird. Dr H definitely thinks outside the box and his methods aren’t widely accepted by some other doctors (unfortunately) so I think it makes sense your brother is skeptical. You just have to consider where he’s coming from which sounds like you have, and also put your best interests first and foremost. For me, the surgery helped with symptoms I did not even realize were related to this condition… my anxiety has been greatly reduced and I am a much calmer, happier person. People around me have noticed this change as well so I have to think it is real. And as Dr H’s NP said to me, the plavix is really a band aid. It does not fix the underlying cause, and comes with risks as well. I felt like I had to try to be the best I could be… however I also had reservations and thought about canceling many times. It’s normal and natural. You’ve got a while to ponder it and maybe your brother could come to the pre op appointment with you. That appt gave me a lot of clarity on what to do. Good luck and hang in there!
My symptoms vary greatly from day to day, and when I first began experiencing them 10 years ago I could go weeks without them being too bad. If you can get a surgery date, and Hepworth thinks it’s worth it, go for it! It’s unfortunate your brother doesn’t understand. I don’t think anyone who hasn’t experienced these symptoms can fully realize how debilitating they are - and fixing the root cause is always the best way to solve a problem.
You aren’t crazy. If you want your brother to be more comfortable with the surgery, has he read any of the literature?
Hang in there. From what folks have said, you will feel much better post-op.
Bopper - You have a coveted spot w/ Dr. Hepworth. There are literally dozens of people waiting in the wings for him to re-open his practice as he is not currently taking new patients until maybe mid-May. I feel excited for you to have the opportunity for him to do your surgery & agree that you should proceed as planned.
As @blossom & @tokenegret said, symptoms can vary & sometimes change quickly. ES is an unpredictable bird! What feels like remission at the moment could turn into really tough symptoms tomorrow, & I think you would be very sorry if you’d let the opportunity for surgery slip between your fingers.
I agree that your brother, though busy in the medical world, doesn’t understand ES & can’t comprehend your symptoms, no one who hasn’t had ES can. I’m glad you respect his opinion & also that he is concerned about you. That’s what family is all about!
I do think that overall members should be cautious & not rush into surgery if symptoms are not too bad, BUT when it’s vascular ES I think differently- as I’ve said on here before, I put off surgery initially as the pain was manageable, & I’d read about someone’s bad experience which worried me. My symptoms changed though & I started getting vascular symptoms, which made me feel pretty ill & were scary, so that’s when I decided I needed surgery. Like you, I was able to see a really good surgeon (in the UK), I’m so glad that I did make that decision as our UK members are struggling to get surgery now! As Dr Hepworth seems to be having to stop taking new patients, it would be awful if you put off surgery, then needed it later & couldn’t get in to see him again!
Taking the plavix as @blossom said is not a cure- it always worried me with jugular compression that there could be a clot, or supposing I had another car accident, what might happen if the seatbelt tightened across my neck?
So I agree with everything the others have said! Hope this reassures you, & maybe gives you some things to discuss with your brother
Thank you all so much! I knew you would help me feel better! Ironically, my neuro symptoms seem to be really ramping up again, and now I’m suddenly feeling like the surgery can’t be done soon enough! Headache is miserable, and I’m back to that weird thing where I’m tripping over my words. Hepworth said it could be the styloid interfering with the glossopharyngeal nerve. I hope so because it’s really disconcerting!!
Our symptoms have a way of showing up in the nick of time to confirm what we know is right in our hearts but fear in our minds. I expect you’ll have no regrets for going through with your plans for surgery, @ Bopper! We’re here for you always.
I will be shortly after you with surgery at Dr. H as it seems. Im trusting Dr. H. too. Makes absolutely sense what he is doing and he seems to have a lot of experience. He had even measurable results (jugular velocities) differing from the normal. I think those high velocities and high pressures aren’t very healthy in long term.
So a surgery that can resolve that should be justified. I find it remarkable how calm and unexcited he is when he is explaining the procedure. Makes me feel good and safe.
I can also understand the concerns of your brother and I’m thinking that might be consequence of a lack of information about your condition. Maybe he can have a read in our research paper section especially the IJVS topics and his concerns will at least be different.
My symptoms are also alterning depending on my activity level. I can’t wait for having the surgeries in Denver that will hopefully bring back quality of life after years of odyssey.
Wishing you all the best and less concerning about the surgery. Stay thinking positive and focus how good you will feel, after venous problems are resolved.
I’m not wishing you pain, but it is good in a way if symptoms to flare up before you have surgery, it’s a good reminder of why you’re doing this! Hugs to you, hope that it eases soon
I think you should cancel your surgery and tell him that you would like me to take the spot
Honestly I’d go ahead with it. My experience with Dr. Hepworth so far hasn’t been the same as others but I still think we will get there based on the feedback here. I don’t think he would perform a surgery if he didn’t absolutely think it would benefit your condition.
@TheDude This is good news. I guess this is the other side, I remember that you had surgery with Samji on one side. I agree with you about Dr H.'s measurable blood flow on Jugular Veins during surgery. No other ENT doctor does this while operating his patients. He can even detect other non-bone compressions on the Jugular Vein such as muscle, scar tissue as was the case with @blossom which he corrected while on the operating table if I remember it correct (Blossom can correct me here).
Does anyone know how much money Dr. H charges for these surgeries? I am sure it is more since he does this with Vascular Surgeon of some kind to do the Catheter Angio during the surgery.
Yes, that’s correct. He removed my styloid but then after that, the vascular surgeon did a venogram to check my vein, and it was still compressed. That’s how Dr H found the scar tissue there. According to the surgical report they could not even get the venogram catheter up the side that was pinched… it was occluded completely. So it was pretty bad!
My surgery was somewhat inexpensive because of my good private health insurance — I think I paid out of pocket something like $500 including for the vascular surgeon. Without insurance the bill was $10-$12k, I think but oftentimes with healthcare the price billed is less for people paying out of pocket. American healthcare pricing is overly confusing and complicated. I’m feeling a lot better and almost at 100 percent so it was worth every penny for me!
@blossom Had the Venogram not been done right there and then, you would be dealing with post-surgery symptoms for sure. I am glad he is doing that.
@Blossom, you had an angiography done before your surgery, correct? How did that report compare to what they found in surgery? Did the angiography find the blockage?
@Jules, it’s such a funny thing. I actually WANT symptoms, to reassure me that surgery is necessary. But then when I have them, I start to panic. “What if it’s not Eagle? What if there’s something ELSE wrong with my brain?” I just need to get on with it!!!
The angiogram I had in 2020 didn’t show anything but it was indicated to me the doctor doing it didn’t check my neck… he was focused on my head and ruling anything out there.
During my first cerebral angiogram my Dr said that my left IJV was so occluded he couldn’t get the micro center up there. Took me a few days to realize how messed up that is. My right side is my dominant side and is compressed > %80.
I’m going to see Dr Hackman to discuss bilateral styloidectomy.