Kjetil Larsen’s name used to appear with some frequency on our forum as a good resource for ES information/diagnosis. When he went off to medical school in Brazil, it seemed his name came up less often. I expect he’s mid-residency by now or perhaps done. We don’t know what he’s specializing in after being a PT, but we who appreciated his YouTube videos & knowledge about ES, hope he will continue to create awareness about it & its vascular variants.
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Thank you for sharing this! My right hip is very bad. I’ve been trying to alleviate it with internal pelvic floor therapy and external, exercises, etc. I can definitely feel when it acts up then it travels up the chain. I hope you’re doing better.
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Oh I hope you’re managing to get some help for it in terms of shorter acting physical therapy. I found osteopathy was the best thing for me pre surgery in the end but unfortunately lived with the extreme pain for many many years before I found a good osteo. I also did pelvic floor therapy weekly for the last 7 months as I too had so much pain in that area.
If you can please try to find a good labral tear surgeon. I’m no where near recovered but already have so much pain relief in my abdomen/lower back since doing it. And my upper body is finally starting to relax too. I had no idea the hip could cause so much pain to the rest of the body.
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Thank you! I had a baby 9 months ago so everything is completely wrecked. I have pinching and zingers and numbness all over my lower half. I also have tarlov cysts in my tailbone, and L4/5 fissure and L5/S1 degeneration. I don’t know where pain is coming from and it feels impossible. I have been able to start relaxing more as I’ve worked on my pelvic floor internally and with the hip hook externally. I’ll be seeing my hip doc again this week - I have hip displasia apparently in the right side. The left side isn’t great either. Both have tears.
The styloid was a big piece of the puzzle in terms of upper body tension. My right styloid was shortened to 3cm and I feel it’s still not short enough.
Phew.
I’m so glad you’re feeing better in many ways!!! I was able to get to that point pre pregnancy. Fingers crossed…
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Oh I feel you. All of my symptoms got so much worse post pregnancy. While pregnant however I felt incredible, all that separation between the joints I’m guessing that comes during that time.
I also have multiple Tarlov cysts at S1, S2 and S3 and post styloidectomy I thought they were the problem. I had so much pressure in that region - along with all the other stuff I have going on. Since having my hip surgery, that pressure has gotten worse when I sit and my pelvic misalignment became far more obvious. The hip becomes very tight post surgery (especially because I have capsular plication to stabilise the hip joint). Sitting is actually a restricted movement post hip surgery, I’m only suppose to sit for less than 30mins at a time. So I think that’s just where I feel the resistance of my hip issues the most. I also think that’s why my pelvic floor muscles were so off - they were compensating for my hip.
Sorry this is a bit of a ramble but just want to let you know that your symptoms sound really similar to mine. And I’m already finding so much relief since surgery. It’s a long recovery (like ES) and you have to put in a lot of work to rebuild the hip but it’s definitely worth it. Data shows hip surgery to be the second most rewarding intervention for patients. I can see why 
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@BraveKat you are indeed brave! You’ve done so well advocating for yourself, fighting to get answers & treatment, I hope that your hip heals soon and you can get back to a normal life 
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Thank you @Jules for your ongoing support. It’s so appreciated. 
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@BraveKat - having had bilateral hip replacements, I know how recovery goes & that it can be a slow & frustrating process. Your attitude is so good & being consistent with physical therapy exercises & movement in general, will go far toward hastening your recovery. I hope you find your body mends quicker than you’ve been told.
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@Isaiah_40_31 @BraveKat I second Isaiah’s thoughts. I’m 5 weeks post op for a hip replacement and it is a slow unfolding. It’s been equal parts mental game as it has been physical. A lot of crying has occurred…but I always feel better after that.
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That’s great to hear you’ve had your surgery! I wish you all the best with your recovery.
Emotionally I’m doing ok, I think because I don’t feel any pressure right now to do too much. It’s winter here so hibernating feels luxurious haha
Two weeks post op, I experienced a big set back from doing something I shouldn’t have (accidentally) and I really don’t want to do that again so hoping ive learnt my lesson on pushing before I’m ready.
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Sending both of you much sympathy, @Chrickychricky & @BraveKat.
I did the same thing, @BraveKat. It took extra recovery time to regain what I lost, but I did mend completely in the end. 
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Good afternoon. How do you feel?Can I ask here on the forum that you send me your CT and MRI scans (Dicom files, all files from the disk, please send a link to Google drive or similar). By private message.
Very interesting post about the connection between the your hip and styloids. I have been living with eagle’s for 11 years and its become very severe lately. One of the things that really helps me manage and cope is endurance exercise and I was into triathlons a few years ago where the biking motion eventually damaged my hip joint due to impingement. I sold the bikes 2 years ago and still manage to run and swim but had to dial things way back because of the hip impingement FAI labral tear damage. I’ve met with 2 arthroscopic surgeons this year to discuss surgery, but I am hesitant until I get my eagle’s syndrome corrected, I am working on at least getting a right side styloidectomy as soon as possible. Once i get things stabilized I want to circle back and get my left hip fixed. In your experience which ones is the more difficult recovery? and how is your hip recovery doing now?
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@SCJeff - I know you didn’t address your question to me, but I’ve had 3 ES surgeries & bilateral (in 1 surgery) hip replacement. I was a long distance runner when diagnosed w/ ES & had to stop running 8 yrs after my 1st two styloidectomies due to hip damage. In my experience, ES surgery was a “skate in the park” to recover from compared to my hip surgery.
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Wow, a bilateral hip replacement sounds pretty major. I can’t imagine, and thanks for confirming my plan to fix the eagle’s first. How have your hip replacements been long term? and are you able to run anymore? I’m facing arthroscopy but I know these are not always successful so I might have get a replacement one day too.
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Hi @scjeff it’s so interesting to hear you also have FAI and a labral tear. I wouldn’t know what it would feel like to do the surgeries in reverse but for me, the Eagles unilateral surgery was much much harder. I was in bed for 4-6 months and pretty unable to do anything for 8 months or so I’d say. Even when I did have good days it was only because I wasn’t doing anything. It wasn’t until finding the Neubie machine that I felt like I really managed to settle the tension in that area, I think because the diagonal cross loading that my body was doing due to my bad hip wasn’t being alleviated.
I watched a YouTube video of an ES case whereby the patients es had been caused by a bad knee. The chiropractor/doctor explaining the case explained that since the knee had been fixed and the gait corrected, it was now time to tackle the styloid.
I do think my recovery might have been easier if I had access to a machine like the Neubie (to reduce the neck/shoulder tension first) then do the hip arthroscopy then Eagles surgery.
The other thing is my hip pain really flared up while recovering from ES which is how/why I got to investigating it further.
I hope this helps.
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I’ve not had any hip surgery, so can’t comment about recovery from that, & I appreciate @BraveKat 's info, it’s fascinating…I would just say though @SCJeff looking at your imaging I think your priority would be the ES surgery & possibly C1 shave. Yours is a pretty extreme case!
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@SCJeff - I opted to have both hips done at once after going through two ES surgery recoveries. I had hoped that would shorten my recovery, but in the end, it didn’t.
I felt pretty good 2 months after my first ES surgery & 6 weeks after my second one & was able to start back into my training, initially at a lower, slower pace. Ultimately it did take a year for some of my nerve pain symptoms to resolve, but they weren’t bad enough to really hold me back after about 3 months post op.
My hip surgery really slowed me down for 6 months post op (opposite to @BraveKat’s situation). My orthopedic surgeon told me I could run or do whatever I wanted once I was healed, but due to a latent back issue which I thought were from my hips but weren’t, I opted to stop running & started long distance hiking. My hips are great, but my knees are shot now. Putting off knee replacement as long as possible!
For the record, I’m ~30-40 years older than you & didn’t start long distance running till my mid-50s. I was diagnosed w/ ES at 58. As you’re significantly younger, your recovery from any type of surgery has the potential to be quicker than mine was.
I agree w/ @Jules suggestion that ES surgery should be your priority.
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I continue to get the weird hip pain and just had a flare as I was outside with baby. It’s my right styloid. Shortened from 4.5 to 3 intraorally 7 months ago but it wasn’t enough. It continues to flare up my right neck, shoulder, and hand. And then the right hip will start… or vice versa. Hard to know.
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I’m so sorry the surgeon you saw didn’t at least cut your styloid back to average styloid length (2.54 cm). That might have helped more, but likely even shorter than that would be the most beneficial. The surgeons who provide the best outcomes usually cut the styloids back to ~.5 - 1 cm so very close to the skull base.
I’m sad about the way your symptoms are impacting your ability to be the mom you want to be & especially not being able to enjoy your baby to the fullest extent possible. Such wrong timing for you to be dealing with ES!!
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