@dreamliner: I don’t know what you ended up deciding to do. And I certainly don’t have a similar scenario to yours. But I do have a few thoughts.
*I would stay clear of anyone who sees me “as challenging as it gets” or is reluctant to do surgery. Often, it’s not that they don’t want to help; they just don’t have the experience with the ins/outs of the venous system that Dr. Hui has.
*I think your theory (SIH/leak - RHP/closure, leading to rerupture or new leak) is highly possible. In fact, that’s exactly what happened to me. Dr. Hui hypothesized I had baseline mild venous congestion and recommended stenting. I couldn’t travel for the procedure and ended up with an LP shunt, which caused a lumbar CSF leak/SIH. I had laminectomy CSF leak repair but within 48 hours I ruptured and was leaking again due to high pressure. So I ended up with a vp shunt/2nd laminectomy leak repair which stabilized my situation. I think Dr. Hui is light years ahead of most doctors when it comes to the venous system.
*If you’re wanting to stay within the continental US, then Dr. Hepworth would be a great one to consult with.
Every situation is different. I’m just passing along my experiences.
@Isaiah_40_31 that’s exactly what he said, at one point he was the only skull-base surgeon in a swath of the military, & he would have hundreds of people each year who needed a different approach. I feel like meeting him in person was much better than on zoom. He can come across to some as a bit big-headed over a Telehealth, but he is much more personal & sincere in-person.
@1speechpick I think this is what happened to me, except my sub-occipital repair held for ~4 weeks or so. Thank you for sharing your thoughts & experiences, it’s nice to know that someone else is in the same boat, although I wish we both had something a little nicer in common.
I have pretty much decided to go with Dr. Lo & Costantino after Dr. Hui made a call to Dr. Lo to discuss things on my behalf. Dr. Lo admits he thinks he was overestimating some things which led to him calling me extra challenging. I think that + Dr. Costantino’s idea to use midomycin-c for excessive scar prevention is a solid plan.
@dreamliner: Here’s the thing. When it comes to venous stuff, Dr. Hui is just that good. I’ve always felt like where Dr. Hui really excels is in his venous diagnostic skills. He is great surgically, but there are others that are great, as well. In my situation, I was unable to travel to Hawaii for the surgery he offered me. I was bedridden and couldn’t walk across the room, let alone take a flight to Hawaii for surgery. Traveling from the continental US to Hawaii for surgery is unrealistic for many of us (and isn’t always smart, especially if there is some sort of complication). But what I LOVE about your situation is, Dr. Hui IS involved and called Dr. Lo to give his diagnostic perspective about what needs done. The USA venous experts are a small group and tend to consult with each other quite a bit. Sounds like you’ve got a solid plan! I met with Dr. Lo along my path a couple of times and really liked him.
Was your bedridden status due to your P450 issues.
Some of those drugs are very dangerous. I was taking a drug when i was young for mild depression. I dont remember name but it had to have been on my list of dont take. I thought i was losing my mind. When i stopped taking it all cleared up.
That’s a fantastic question. My bedridden status was multifactorial. I had a complex neurological sequence of medical events. But the medication toxicity was brewing unknowingly at the same time. I’m so blessed that it was found.
If you’re a 2D6 null metabolizer, I bet you had a difficult time while on the psychotropic med, as most psychotropic meds are metabolized by 2D6. I’m hoping when I get off this med, things will fully clear up for me. Tapering the med is quite difficult.
Hi @Isaiah_40_31 & happy thanksgiving, was doing some reading about this while waiting for Dr. Lo & Dr. Costantino’s offices to figure things out…I have read a bit on the forum about this topic but recently was advised by a friend to perhaps forgo surgery right now in favor of trying atlas orthogonal chiropractic treatment, or some other type of manipulation (PT) that could technically move things around some. In your experience & in hearing from others, do you believe something like a military neck is a reason to cancel/delay surgery? It’s hard having your mind made up & to just be waiting on a surgery date & then have something like this enter in & derail the thought process a tad.
@dreamliner - We’ve had a number of members who’ve tried atlas-orthogonal chiropractic therapy & have had temporary relief from it but nothing more permanent. Most have eventually ended up having ES surgery.
I have had chiropractic therapy for other reasons for years & have had a similar experience - it helps for a time but has never corrected my situation enough that I don’t end up going back repeatedly for adjustments over time.
Surgery is more likely to give you better long-term recovery from your symptoms.
@Isaiah_40_31 thanks a lot for your input, I guess perhaps some form of alternative treatment might be more beneficial to pursue if CCI/loose ligaments/atlas shifting was suspected? my friend is very into the prolotherapy/stem-cell world, however they deal more with CCI issues. It’s my understanding that those aren’t really of interest if CCI isn’t suspected.
Dr. Hui noted that my atlas was “large,” & my symptoms seem to have started around age 20/21, so perhaps I was still growing or had just finished…that in theory could have caused the compression to be too much for my body to compensate for? I guess it’s really easy to go back & forth trying to make sure you’re going down the right path, but given my imaging, I’m not sure conservative treatment would even be enough to provide tangible improvement, let alone long-term improvement.
We’ve had quite a number of members with & without CCI who tried prolotherapy prior to being diagnosed with ES & almost all have said it was a waste of time & money as it didn’t help reduce/relieve symptoms. That’s not to say it isn’t helpful for other problems. It just doesn’t seem to help w/ ES symptoms.
You made an interesting, & likely true, observation that your symptoms got worse around 20/21 as you finished growing. I would agree that could be when your large C1 reached its max size, & the gradual compression it was causing as it grew reached critical mass.
Hi @dreamliner. I just wanted to comment on the atlas-orthogonal treatment. Prior to my surgery, I was really hoping that AO adjustment would fix things for me. I had the adjustment done, but it did not fix the situation & I ended up having surgery. The AO doctor told me that he thought that I needed surgery, but that it was worth a shot to try the adjustment. I think that some others here have had a similar experience. I didn’t really want to have to go through surgery (as I’m sure no one does!), so wanted to at least try something that could possibly shift things a bit. The dr. did mention that once I had surgery I would benefit from therapy/exercise to improve the whole neck/shoulder/upper back area. The AO treatment was pretty expensive & not covered by my insurance. Also, I did end up having surgery with Dr. Costantino. So far, we’ve only done one side & are waiting to see if that is going to allow sufficient blood flow. I hope that you are able to have peace with your decision. I know that I felt some relief when we had a plan with Dr. C, but I still would have loved to have had another alternative to surgery. When you do need surgery though, it is comforting to know that there are doctors out there who are interested in doing the best that they can for their patients. Please let us know if & when you are going to have surgery.
Have you tried having AO treatment since your surgery? Or maybe it was needed after treatment?
My husband is having a bilateral styloidectomy and C1 shave on December 10. He’s not sure if he will be able to have an AO adjustment after the surgery since the treatment is done by pushing on the transverse process, which will be removed in this surgery.
Your husband shouldn’t need AO treatment after his surgery @Val7426. I think it’s most often used to try to move C1 to a better position to help prevent surgery. We have members who’ve had temporary relief from it, but most haven’t avoided surgery because the effects of AO adjustments don’t seem to be lasting.
I’ve also tried atlas orthogonal and prolotherapy prior to surgery. The AO adjustments were a bit more helpful in my case, but neither did anything for the jugular compression.
I think for most people there is no alternative to surgery for compressed jugulars. While in theory, an adjustment for a rotated C1 could move the atlas away from the jugular, in reality there are usually multiple factors causing the jugular to be compressed. There are often adhesions, scar tissue, lymph nodes and other things preventing the jugular from opening up.
I also have a congenitally large C1. Some of us are probably predisposed to jugular compression due to our anatomy and it only takes a minor injury or inciting event to trigger problems.
I do think there could be a role for prolotherapy/PRP/stem cells if you have residual instability after your jugulars are restored, but you first have to normalize your intracranial pressure by fixing the venous outflow issues and CSF leaks.
@Isaiah_40_31@vap@jrodefeld Thank you all so much for your insight on this. I’m meeting with Dr. Lo one more time this Wednesday before scheduling surgery with him & Dr. Costantino, & this was all reassuring to read. I think analysis paralysis is real especially when there isn’t a whole lot of information to make a decision on, & so I’ve relied a lot on other people’s experiences to help aid my decision process. Am thankful for the time you each took to comment!
I agree with you that it can be difficult to make a decision when there is not a lot of information out there & most doctors aren’t familiar with all of the intricacies involved in vascular ES. My family doctor & nurses had never even heard of Eagle syndrome, so they obviously couldn’t provide any info or help. As I found out once Dr. C operated on me, there was more compression going on than just the C1 and styloid process. I did the same as you in terms of researching other people’s experiences to help me decide about the surgery. This forum and the members here have been truly a blessing.
I did not seek an AO treatment after surgery. I have thought about considering it again sometime since I have bilateral issues, but was only operated on one side so far. It would be interesting to see if an AO adjustment would help at all on the side that hasn’t been operated on. However, since I just had the surgery about 5 months ago & am still healing, I haven’t done anything else yet. I might be hesitant to do an adjustment bc that area has been operated on & it didn’t seem to change anything when I had an adjustment previously.
Thanks for your response & insight. I agree with you that there are often many different reasons for the compression. Although they can identify that there is jugular compression, they can’t always tell you all of the structures involved prior to surgery. i really wanted the atlas orthogonal adjustment to work so I wouldn’t have to have surgery, so I gave it a try. One of the surgeons even said that it would be OK to try just in case it could help me avoid surgery. Unfortunately, I didn’t see any benefit from AO adjustment.
