I tell people on this forum the truth about this surgery…I cant walk correctly as a result of it. And the forum moderator limits the ability of my account to post.
@Eric1 - I have not limited your ability to post. I have only asked that you be moderate in your temperament on our forum. We are here to support each other & we understand that some people are in a world of hurt & are very frustrated. Our goal is to help each person here through whatever challenges they have w/ ES, post op symptoms, & even other comorbidities.
You have posted some inaccurate information that could be confusing to our new or less informed members so we need to limit that sort of thing. Otherwise you are welcome to post here. Please come seeking support which you will receive compassionately & leave your anger at the doorstep. We are all here for you.
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We do want to support everyone on here, whether their surgeries have been successful or not. We do have members who for some reason the surgery hasn’t made a difference, or who need further surgery for other issues, and we want to hear their stories & to help them. We don’t know your symptoms and medical history, whether you have anything else going on alongside ES, but would definitely say it’s too soon to be deciding the surgery hasn’t worked. And if you were told that the surgery would definitely cure you immediately, then that is wrong, and it’s very unusual for a doctor to guarantee that all your symptoms will go with the surgery.
It’s important to be honest about surgery experience so members can make an informed choice, but it’s not accurate to announce that all doctors are lying & the truth is this surgery doesn’t work, when many members have had their health improved.
I will pray for improved symptoms for you, and that you will find answers as to what’s happened- could you explain a bit more about how you’ve been affected? Some nerve irritation is common after the surgery & usually settles down with time, but affecting walking is very unusual, I would guess that your brain perhaps hasn’t adjusted to the alteration in pressure, there could well still be swelling which is possibly affecting your vestibular system? I wonder if a course of steroids might help settle things down, if you weren’t prescribed any after surgery? There are exercises which you can do to retrain the vestibular system if it is this causing your issue, but it’s too soon to tell.
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Well I’m getting my styloids and greater horns removed.
My offer still stands to take a look at your hyoid to see if it’s causing your symptoms or not.
Your attitude and language won’t be tolerated though. So I suggest you change your tune a bit or log off. Or we’ll remove you from the forum ourselves. The community is for support, not hatred.
Surgery has helped thousands of people with ES. Super naive for you to think that it hasn’t. It’s okay for you to tell your story but we will not allow you to promote blatantly false information regarding surgery success rates.
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Where are these people. I have asked Hepworth who has done more than anybody where is clinical studies are…he has none. They don’t even keep track of much of anything in their patient records.
If there was so much success, it should be documented. Its not. Its all anecdotal.
There are literally tens, if not hundreds of case studies in the medical literature showing positive treatment outcomes from styloidectomy. So I’m really unsure of what you’re talking about…
Do you need more evidence? I can attach 10 more studies if you’d like??
It appears you need to become familiar with the medical literature, before talking out of your bottom
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Should I say hundreds if not thousands*
Have you actually read any of those?
Everyone who I have spoken to who had these procedures done had complications. Everyone had symptoms return, worsen, or stay “about the same”. Many had to have additional procedures that didnt work either.
“Success” is in very mild cases and mostly around nerve compression and neuralgias.
You are in for it, you will see that these surgeries do NOT give your life back.
I have literally read them all. I’m a doctoral student and research is my passion.
I literally can’t walk right now. I have been bedridden since last October. Down 40 pounds. Chronically dizzy with head movements. I literally do not have a life. My wife walks me to the bathroom and brings me food. I’m only 27 years old.
So what’s the worst surgery will do? Make me beyond chronic? It’s the only hope we have to getting better. If you don’t heal than obviously it’s not ES that has been messing you up. But you’re to prideful to let me try to help understand what could be happening so you can continue to be angry.
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Where are you getting this information??? Are you making it up??? If there is a bone compressing an artery causing stroke like symptoms, and you remove the bone, the stroke like symptoms go away. Read the papers on the stylo-carotid ES cases.
I may not be a doctor but at least I’m reading the medical literature to base my conclusions on.
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You are literally one person who had surgery and I presented hundreds of cases where people got better. All completed health surveys and any/all side effects are reported. I get that surgery messed you up, and you probably have low mood right now due to hopelessness after your surgery failed to provide relief, and when we have low mood we tend to think poorly of others and the world (I’m a phd clinical psychology student, so I can actually speak to this). You are literally projecting your unsuccessful surgery and emotions tied to it upon others/everyone, despite there being evidence that people get better from the surgery. You are suspicious that people are hiding side effects or are downplaying how little surgery has helped them. You are literally guessing that they are doing so. You have no grounds to actually provide evidence for your beliefs.
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Do you need more? Start adding up all the participants from all the studies I’ve sent (this batch and last) and let me know the sample size and the range of symptom relief across the studies. Also report any adverse outcomes noted in the studies. If you aren’t willing to do this, than I think you are grasping at straws. We will not tolerate you spreading medical misinformation and dampening hopes on those who deserve the surgery for a chance to change their lives.
And I’m sorry, but I don’t believe you that Dr. Hepworth says there isn’t research. Western medicine is evidence-based medicine. He would lose his license if he was doing surgeries with no medical evidence.
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So now I am liar. K.
So me one longitudinal study published by Hepworth or Osbourne. You can’t.
Why do I have to find a paper by them? They don’t need to publish research to be competent at doing surgeries. They base their surgeries on the research that’s already available. Most doctors don’t produce research. That’s like saying a family doctor shouldn’t be prescribing insulin to diabetics because they haven’t published a research paper themselves on insulin success rates and side effects with their specific clients… that would be absurd. Eventually there is enough research that doctors don’t have to produce replication studies anymore because it becomes obvious that the treatment works. Just like all the studies I provided you. They all suggest that styloidectomy works in treating ES, IF symptoms are in fact being caused by ES. Which is why I’ve been suggesting that you may want to look for other reasons for your suffering, if once you are fully healed from surgery and are still experiencing symptoms
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Dude good luck with your health journey, I wish you the best.
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I hope your symptoms get better as you heal more from the surgery.
Although you don’t want me playing doctor, my offer stands to take a look at your imaging. Not a radiologist nor doctor but passionate in trying to help people advocate for themselves. Just send me a DM if you are ever interested. If you don’t heal I hypothesize (as a non-doctor) that your carotid sinus area by your hyoid greater horn may be a culprit.
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@Eric1 Not to stir the pot, but we know one of the two patients Dr. Hepworth lost to an angiogram. She was one of our incredibly helpful & medically knowledgeable members several years ago. She was a bright spot on this forum in spite of her horrible health issues & in spite of her ES surgery not resolving her symptoms. She had a brain bleed during an angiogram from which she died quite suddenly. Angio/venograms are somewhat notorious for causing strokes &/or brain bleeds which cause sudden end of life. It’s one of the side effects that can happen during or after the angio/venogram & for which you sign paperwork in advance acknowledging you know the risks. I had visual migraines for 4 days after I had mine. That’s something I’ve never experienced before & hope never to experience again. I was afraid I was having a stroke with each one.
Dr. Hepworth is not a vascular surgeon. He does not do that testing himself, but the fact he was trying to protect you from having such an outcome is admirable on his part. He also works with quite a number of patients who have EDS & MCAS, & the suggestion that you may have those things, in spite of the fact you haven’t had any testing done, demonstrates that he sees some evidence of their existence via your body’s reaction to the surgery he did for you.
I agree w/ @TML that it would behoove you to have either a radiologist review your imaging to look for carotid compression caused by the greater horns of your hyoid bone or @TML as he is well versed in reading CT scans. His opinion wouldn’t be diagnostic but would be something you could take to Dr. Hepworth or another doctor to discuss. I can point out things on 3D images so if you have any of those showing your hyoid bone & carotids, you can either post them or send them to me via DM to look over.
Thank you for chilling out w/ your language. Much appreciated.
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I’m so sorry Eric, but there’s zero need to come at people with that much aggression. I hope you can focus on your healing and stop projecting on the people who are suffering along side you.
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I am so, so very sorry for the suffering you are going through. I can’t imagine dealing with what you are describing–it seems really dark and scary. I really hope that somehow things get better for you, I really do.
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Hi Eric, First let me say that I am very sorry to hear that you are having complications and serious symptoms from your recent surgery. My heart goes out to you. I completely understand all the emotions surrounding ES as I have recently, just 12 days ago had the largest styloids (my Dr team has ever seen) removed from my skull. Not that that is something to brag about, but to put it in perspective, imagine the HELL I have lived thru for 6 years+ that I was told was imaginary. Over the last 3 years, I have been in some very dark emotional places, it took some meditation, pain management and CBD to keep me moving forward.
You are welcome to search for my case. I went into this like most people, making an educated decision to take a chance on a dangerous surgery and I did emerge alive. I still have a great deal of healing to do, but I’m optimistic. I’m not out of the woods yet, as we may find I have cervical instability issues, but I’m being careful and patiently observing my symptoms.
At no time have I felt anyone on this board has tried to hustle me toward surgery or a doctor. The people here are very well meaning, experienced and knowledgeable. In fact their knowledge has saved my life. If you can find a way to manage your pain and quiet down your emotions, they will help guide you to your next step. However this will require you to give us more information, images, surgical notes, etc. We will do our best to help guide you. Our goal is to support all in the community to get to the best place possible.
With love and support - Babs
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