Msdstc,
Glad to hear that my initial suspicions/instincts are correct. He has some interesting theories (vagus nerve info) worth reading but I took everything he said with a grain of salt as far as what he said in his webinar.
I personally have had prolo-therapy (about 20-25 years ago) and didn’t see much relief and went thru multiple rounds. If anything, I question that it may have had negative impact in my neck creating more scar tissue. A Colorado based company is also hocking something of the same although different products but all targeting ligament instability in hypermobile ehlers danlos patients. Some form or another of PRP or stem cell injections. I made inquiries and they called me. I asked very detailed specific information and all they wanted to do was schedule a consultation “to talk about it”. I told them I wasn’t paying for a consult without more information. They sent me a web page link that was a joke.
Ive read the data and based on my own personal experience cannot justify spending thousands of dollars for something with weak data. Alot of EDS patients are struggling with very high levels of disability and so little being accomplished to help them in medical realm. Just like many TMJ specialists, these alternative medicine people are targeting patients pocket books and taking advantage of their desperation for relief. Insurance doesn’t cover most of these therapies so it is a double whammy for patients cost wise.
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You speak great wisdom, Snapple. We have a number of members who were diagnosed by the doctor at Caring Medical, but the majority didn’t receive any benefit from the prolotherapy they paid for to treat their symptoms. It is wise to be exceedingly careful when considering alternative treatments.
We have a member (@coldbear) who lives in Scandinavia & has done medical research for 20 yrs. Based on what he’s learned via that research, he advises sharply against venturing into this arena
Yup! If injectable treatments worked as advertised for vascular variants of eagle syndrome, why after hundreds of patients haven’t we seen a single published study with some before/after imaging showing the effect? I think that fact speaks for itself.
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@coldbear - I think @Snapple2020 's focus was more on using it for stabilizing lax ligaments but you have hit on an interesting & controversial topic as many, maybe all, of our vascular ES members have some ligament laxity which has led to their vascular compression. The jury is still out on this subject.
I had prolo over a period of about 10 years primarily for ligament laxity in my neck. I had been told I had had my neck over-adjusted by chiropractors. I had had 2 whiplash incidents and found chiropractic the only thing to help my pain by re-aligning my neck. This laxity can happen for a variety of reasons such as whiplash, head trauma and commonly in hypermobility (ehlers danlos). The theory is that injections (primarily dextrose) will cause irritation triggering the ligament to tighten helping you with cervical and/or spinal instability. I know my ES surgeon told me when he did my 2nd ES surgery, my neck was very tight.My TMJ doc believes the tight ligaments (or could be just overstretched and tight?) clamp down on the elongated styloids causing the pain - I think he questions the value of ES surgery.
After a period of time after I had prolo therapy, I continued to have neck problems and went to an oral facial pain clinic at UCLA. I just happened recently upon that consult report from early 2000. The doc said I had nodules in my neck…that he felt were caused by the prolo-therapy. I sometimes wonder if the injections hurt me and contributed to eventual elongated styloids/calcifications by causing excessive “irritation” in my neck ligaments?
I have a history of nerve compression that needs surgical release. If you have lax ligaments, you tend to overstretch the ligaments causing micro-tears, then scar tissue formation followed by nerve or vascular compression. Some MD business’s out there are claiming they can dissolve these compression sites with injections. Ive been dealing with this issue for decades and its news to me that these so called compression sites can be dissolved without surgery. I’d love to believe it is simple as that.
I don see how prolo can be helpful at all for vascular or standard ES. I wish there were better therapies for stabilizing ligament laxity. I struggle with what feels like a bowling ball on my neck almost daily and regularly do deep dives into new ways to address this ligament stuff. I see interesting “causal” theories about how things are related but no cure or fix…
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For the record, I will soon have surgery for bilateral styloid-C1 jugular compression, and I have no indications of any ligament laxity, trauma, CCI, AAI, MCAS, EDS, or any of the other alphabet soup conditions to which folks sometimes connect to their Eagles. I am pretty certain that a lifetime of grinding my teeth at night led to chronic overuse of the three styloid-attached muscles and subsequent styloid hypertrophy. My personal opinion is that the simplest explanation is usually the most likely. While there are undoubtedly zebras out there, I’m proud to be a horse haha! 
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hahha. You are lucky to be a horse coldbear!
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So glad you’re in the range of horse not zebra as far as your ligaments go, @coldbear. I shouldn’t have made the blanket statement I did. It just seems that so many of our members w/ vascular ES are also suspected of having one or more of the “alphabet soup” (
) conditions you mentioned. Unfortunately, there are also doctors that will postpone or deny ES surgery if they suspect CCI might exist.
In my opinion, removing the styloid(s) & dealing w/ the compression first to see what kind of results that gives is a good option. If symptoms persist at a significant level then dig deeper for the cause.
Do you have surgery scheduled? If so, when?
It’s looking like June for me, but still waiting on final confirmation! I’ll definitely post an update afterwards 
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