I am fully in this community. I had major surgery earlier this year with Dr. Hepworth, with a good amount of success to a degree that can be expected, all things considered. More to eventually come, what and when is yet to be determined. This paragraph is the most vague thing ever.
I am wondering:
Have you found someone you trust and enjoy engaging with (a therapist, or maybe just a friend, or a community like this…IRL), about traumatic and disabling rare medical conditions? Fun topic.
Post Styloidectomy/IJV/C1 shave/shenoid sinus repair… what has anyone else done for PT? I have someone good that I see not often enough. Also…has anyone else in the world been through this?
I’d love to hear more details about your surgical experience with Dr Hepworth. What symptoms improved? Do you have other issues that still need to be addressed?
I’m having surgery with Dr Hepworth this Monday. Probably the same surgery you had, though I don’t know whether a C1 shave will be necessary.
To answer your questions,
I have not really found therapy to be especially helpful, but forums like this are about as good as it gets since at least people know what you are talking about.
I’m also curious about physical therapy. I don’t think much is required to rehab specifically from jugular vein decompression, but for many of us physical therapy helps deal with any sort of cervical instability and overall spinal alignment that may be contributing to our conditions. Have you asked Dr Hepworth for a recommendation?
One option may be Kjetil Larsen who can be booked for virtual sessions:
I’m so pleased that you had a decent result from surgery, & good that you recognise it will be a long process & that not everything may resolve with one surgery, although obviously I hope it does!
I’ve just had styloidectomy for bilateral IJV compression, didn’t need aC1 shave or ballooning etc. My vascular symptoms improved alot soon after surgery, I have been very lucky. I just did the PT I was doing before surgery for a prolapsed disc C5-C6, which was gentle neck stretches & chin tucks laying down with a pillow for comfort, so probably not really relevant to you!
I hope that you continue healing & seeing more improvements!
I went to a PT session yesterday from someone who is highly recommended and is only available once a week because he teaches. He was aware of Eagle Syndrome.
I laughed when he did a google search to show me a diagram for the vagus nerve and it was from Dr Hauser. In my head I am like "Dude, I am already aware "
Of course, he wanted me to do chin tucks. The whole time he was showing me I kept thinking of Larsen. He had me do some version of the door stretches. I didnt even feel it where it is suppose to help. It was in my back not my front.
Really, the only good thing that came out of it was affirming what I already had surmised.
Everyone needs to be cautious when doing physical therapy. He did say thoracic outlet problems can come from muscle issues and or mechanical issues
I would say if you are going to do chin tucks consider only gentle movement. Larsen example was exaggerated. Probably to show the issue.
My PT was showing me to do it with minimal movement. Pre surgery i am not sure i am going to do it. I walked out of there with a headache.
Definitely good to evaluate any therapy…the chin tucks the physio had me do were chin down to the chest, laying down & they helped the tightness in the back of my neck, but others find they don’t help. Amazing how different everyone’s experience is with ES, the variety of symptoms, I suppose given that angles , lengths & width varies so much in such a cramped space we shouldn’t really be surprised…
Your version is one that I have done. I do feel it stretch the muscle in the neck and down the shoulder. I am not going to do it on the side that has the worst styloid and the worst muscle pain down my neck to muscle but am going to try it on the other side.
However, this is not the version of the term the PT showed me. It is the version where you are creating a double chin. In the Larsen video there is a Poster who called it the McKenzie chin tuck.
I believe anyone with this syndrome has to be careful before surgery with PT because of all the variables.
My neck/shoulder pain is worse today after PT. Going to put lidocaine patch on it and see if it helps. I also have head pain that I didn’t have before. In my next visit I am going to ask for something different. Like trigger point or manual manipulation.
I’m sorry PT didn’t help you yesterday, @JugularEagle. Many of our members have noted PT pre-op does aggravate symptoms. As you noted, it may be something worth putting off until after your styloid is shortened.
When I was diagnosed w/ ES, I started researching online to find out more about it. Early on I came across this forum & have been here for more than 10 years now. I’d never joined a forum so it was a leap of faith for me to “test the forum waters” by joining this one. It has helped me in so many ways over the years & far beyond just w/ ES. The other members here are AMAZING & oh so helpful & encouraging.
Your situation is much different than mine as I started w/ regular ES but ended w/ vascular ES which resulted from a cycling accident. I’ve just had my 3rd ES surgery (w/ Dr. Hepworth…another surgeon did the first two) but this one included IJV decompression. My recovery from has been astronomically easier than the recoveries from my first two ES surgeries in 2014/15. Now to answer your question, I never did PT after my ES surgeries as I didn’t need it. Doing neck range of motion exercises w/in the limit of pain tolerance worked well for me to keep my neck flexible. I didn’t have any trouble w/ tight incisions post op for which I’m thankful. I’m glad you’ve found a good PT, @Hello_World. Even if you feel you can’t get in often enough to see your PT, if you do the recommended exercises at home, you will continue to benefit
I also agree with your comment about not finding therapy to be especially helpful… I went twice recently to try out someone new and left feeling much worse. I was explaining medical issues and told her that I had surgery earlier this year and that I have eagle’s syndrome. She asked if I made it up and diagnosed myself…? No, I had surgery and was diagnosed by the surgeon. Not going back there.
@Hello_World - YIKES! That was a pretty bold question on the part of the PT!! It never ceases to amaze me how cocky/overconfident some people in the medical community are. I would want more information if someone told me (s)he had an ailment I’d never heard of, & I’d research it, not poo poo it!
The PT i went to who teaches PT works at the same facility as the infamous ENT that declared I dont have Eagle Syndrome despite neuroradiologist pointing out the issue.
So i took in my Radiant 3 d imaging in case he read that note.
Any lay person can look at my images and see why I might have a problem once they are directed where to look and they compare it to a normal person as my Dentist did for me…
As I showed him the image i said what the doctor told me. The look on his face said it all. He clearly saw the problem. I forgot to take in the non Radiant pic that isaiah notated for me but it also shows the problem.
I encourage the Victims of medical gaslighting to take two picture to their appointments. One of a normal person and the Radiant picture that shows your horror show. If they cant understand the issue after comparing the two they should be jettisoned.