I have a uni-lateral Jugular decompression/ Eagles surgery coming up in 16 days in Colorado with Dr Hepworth.
For those that have already had ES surgery: What do you wish you had known prior to the procedure?
I’ve been searching through some similar posts as I know others have asked this same question, but still seemed smart to write my own post.
Any feedback for me or the person that will be helping me post op is appreciated.
Some specific things:
*I’m having surgery at “Porter Adventist” in Denver and would love to hear from anyone else who has experience with this hospital?
*I do have CCI which I have had allot of prolo-therapy/ AO for over several years and while my C1 hasn’t gone out for about 2 years, I am hoping it holds through this surgery. It would be great to hear from more CCI patients about how ES surgery went.
*Due to elevated histamine/ mast cell activity and am NOT looking forward to going off my MCAS and pain meds a week before surgery. For anyone with similar issues, was there anything you could take up until surgery? And/or anything else that helped you cope? ~( This will be discussed with nurse practitioner closer to surgery but I’m curious to learn how others dealt with this).
*A C1 shave may or may not be included and that will be decided during the surgery but a left styloidecotomy is more or less guaranteed.
*Also: Return to Airbnb asap or extend stay in hospital/ overnight if it’s an option?
Lastly, my baseline is not great as I have moderate ME CFS( housebound) and dysautonomia( mostly manifests as orthostatic intolerance and tachycardia) and I’ve had constant face and body pain for 16+ years, so hearing from others who had surgery after living with untreated Eagles for a protracted period of time( and/or who had debilitating symptoms) is especially valuable.
Also, open to any other random constructive feedback or suggestions:) Thanks!
@Glitterbats Best of luck to you. I think staying the first night in the hospital so you can be monitored is a good choice. If all is well in the morning you can discharge to your rental.
@Glitterbats - I’m so glad you were given a surgery date far ahead of what you’d been told would be the case w/ Dr. Hepworth! I think at least part of the reason is that you’ll be operated on at Porter Hospital vs Presbyterian St. Lukes which is the place Dr. Hep usually operates. I suspect part of the delay w/ patients not being able to get more timely surgeries w/ him is lack of OR availability at PSL so the fact he’s expanding to using Porter demonstrates his desire to expedite surgical care for his patients.
I agree w/ what @Chrickychricky said regarding the hospital stay though outpatient surgery is now the norm, if there is any complicating health factor or immediate post op problem then a 1 night stay is mandated. If you aren’t offered that but feel it’s justified for your peace of mine then you can push for it though you may get resistance. That’s where self-advocacy becomes mandatory.
I hope that all of the symptoms you mentioned in your last paragraph reduce/minimize over time as a result of your surgery. I put your surgery date (3/9) on my calendar so I can pray for you especially that day. I hope you’re able to make the trip w/ a family member or friend to help you post op.
Thanks so much for the well wishes, thoughts, prayers, etc on the 9th! That also makes sense about Hepworth’s starting to operate at more hospitals in order to accommodate the high demand. I haven’t been able to find any other Dr H patients who have had surgery there, so I think it’s a new thing.
In terms of staying overnight in the hospital, I’ve talked to more Dr H patients and close to none of them do it. The only one I’ve talked to that did, stayed overnight because she had a complication that had to be monitored. That being said, many patients of other surgeons do stay overnight, so I’m wondering if it mostly depends who your surgeon is? Like every patient of Dr Bolognese I’ve talked to seemed to stay overnight. I’m a bit confused but I think I’ll plan to go home that day and only stay if they think I need to be monitored. Anyway, hopefully there won’t be a need to stay I guess!
Yes, it depends on who your surgeon is, & to some extent, what your medical insurance requires. There are some medical insurances that require an overnight stay after ES surgery. These days, though, I think most want the surgery to be outpatient if possible.
I look forward to hearing about your experience at Porter Hospital. I’ve driven past it, & it looks like a fine hospital.
Obviously I had surgery with a different doctor, but had a drain in so stayed overnight…pros & cons, it’s nice to still be in hospital if you are worried about something, but sleep is next to impossible in hospital! Plan for the worst, hope for the best as they say!
I’m curious about your experience with prolotherapy which sounds pretty successful! Hard to know whether to do decompression of jugular or stabilization of CCI first! Also, my daughter had MCAS too and likely isn’t a good candidate for Centano. Where did you go? And good luck with your surgery!
I just had surgery with Dr. Hepworth on December 3rd and had a right jugular venous decompression with right styloidectomy and C1 transverse process shave at PSL. I was able to leave the same day and felt great. He is a total pro, and so is his staff. One of the few surgeons that have my 100% trust. He asked me afterward if I felt like I needed to stay in the hospital. That was at PSL, not Porter, but I can only think that the same options are offered there.
Thank you for letting us know how well your surgery went, @Rrubida77! That’s truly wonderful news! Also good information that Dr. Hepworth asked if you wanted an overnight in the hospital.
Honestly, I felt a little too good and ended up separating my shoulder on that side. I have surgery for my shoulder tomorrow (it was on its last leg anyway), and then I will need to have the left side done. I felt immediately better after the surgery.
@Rrubida77 - Sad about your shoulder, but I totally get it as both my knees went south over the course of 4 months so now I’m dealing with those…Sometimes it seems never ending, eh?
I’m glad you’ve had such a good response to your first IJV decompression. I hope your shoulder surgery & second IJV decompression make you “good as new”!
That makes sense and interesting that some insurances require an overnight stay. It may be silly, but hearing the hospital looks ok/ nice from the outside is actually slightly reassuring.
Yes, it’s certainly the best place to be in case of an emergency. But I feel like dealing with all the racket would be challenging after the surgery. I’m leaning towards going home to rest but I guess we’ll see what happens.
Yeah, I totally get that. I’ve heard arguments for doing things in either order. It also kindof depends which is your worst issue or exactly what is anatomically going on, but since there is so much overlap in terms of symptoms with both conditions, it can be hard to even know how much each is playing a role.
I would personally lean towards stabilizing the C- spine first( if it’s moderate or bad CCI) because it’s my understanding that eagles surgery can destabilize some people. TBH, I’m even seriously worried about that in spite of the fact that my neck hasn’t dislocated in 2 years.
Surgery in general poses risk for people with CCI( even just from rough intubation, the impact of anesthesia and the position of the head and neck during surgery), so a surgery that is directly on the neck and may include a C1 shave/ removes some anterior support poses even higher risks.
My neck used to be so unstable, that I personally just can’t imagine going through an ES surgery. Not saying my neck is remotely normal, but I used to not be able to turn my head without C1 going out.
Some people say that ES can cause forward head posture and may in that and other ways contribute to cervical misalignment/ may contribute to instability but I don’t know as much about that. TBH, I’m kindof new to Eagles and don’t know as much about it aside from the fact that I have it( also just been too crashed out with severe fatigue to deal with learning more about Eagles than I’ve needed to).
All I know is I have elevated histamine and some mast cell weirdness but my most recent allergist told me that I did *not have full blown mast cell activation syndrome.
I understand if your daughter has very severe MCAS that may be an issue, but did Centeno say he doesn’t want to work with people with MCAS? Because most of the people that have things like CCI also have some mast cell stuff almost automatically along with some specific other things.
I did try some Regenexx treatments but initially atlas orthogonal seemed to help me much more, and then later I just got a bunch of traditional prolotherapy( dextrose and phenol) through my whole spine and lower C-spine( not even focusing on the very top of the spine) and those treatments seemed to help me more than the fancier PRP and stem cell treatments. Those prolo injections were with Dr Dean Reeves in Kansas. What’s works for each person is different though and I know some people who say those Regenexx treatments really helped them. Regardless of which one you choose, it will most likely require multiple treatments to get some good results.
Congrats on being on the other side! That is great to know you felt well enough to go home that day. I anticipate it will be the same for me, but I guess ya never know. I have only had one meeting with Hepworth but I feel really good about him, both as a person and as a surgeon. Not going to say everything else about the practice has been easy but I can say that I have belief in him as a surgeon and some of his staff have been very helpful. Would love to know how you’re feeling at the moment btw?
It’s great that you felt better right away! I hope I don’t misunderstand this, but I was just curious if Dr H told you upfront that you needed both sides done? Or if you had significant jugular compression on both sides? I’m wondering because I know both my styloids are calcified but the plan has just been to do the side with the significant compression( even though the other side has a little compression also).
Thank you so much for taking the time for such a detailed response. I was just so encouraged to hear your CCI improved with prolotherapy! It’s a big financial commitment. AO used to be helpful to her but no longer.
So sorry you are dealing with other fallout. It must seem endless. Keep us posted.
looking forward to going off my MCAS and pain meds a week before surgery. For anyone with similar issues, was there anything you could take up until surgery? And/or anything else that helped you cope? ~( This will be discussed with nurse practitioner closer to surgery but I’m curious to learn how others dealt with this).
