I don’t think I’ve seen any mention of those being used by anyone on here…sounds interesting! As with any supplement etc a good idea to check with your medical team first, have to add that note of caution but you’ve obviously done research!
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Symptoms of inflammation and infection in my salivary gland appeared 3–4 days ago, but I’ve been noticing a blocked feeling in it after certain meals for several years now. I know I’ve had the stone for 5 months—that’s when I had the CT angiogram.
Do you know of any specialist who could review my CT angiogram quickly and for free (like Kamran)?
I don’t know anybody who do this free
@nemo - Dr. Cognetti in Philadelphia, Pennsylvania, doesn’t charge for an initial consult, but you’ll be looking at February next year, or beyond, to get a consult with him. His cancer patients take precedence over his ES patients so his ES appts are booked far into the future.
I tried PRP for my knees which both need to be replaced because I’d had friends w/ good success going that route. It didn’t help at all. Getting hyaluronic acid injections, several months after the PRP, helped tremendously & my insurance fully covered those where PRP was out of pocket.
Before PRP, I tried BPC157 peptide injections & got no help from those either. Granted I was aiming for the PRP & peptides to help a different problem than you are but felt I should share my experience.
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Anyway, I’m from Spain so in any case I’d be interested in doing everything online.
Sure that’s a different issue. It depends on the situation, but all of those substances work. I’ve tried some peptides myself and they are good
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I believe that Dr Kamran Aghayev does a quick initial consultation, but then a more detailed one afterwards, so might be worth contacting his office?
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I’ve already done it, he said:
“Based on the clinical evaluation and imaging studies, the patient has bilateral internal jugular vein compression at the level of the styloid process and the transverse process of C1, resulting in significant narrowing of both internal jugular veins. The findings are consistent with bilateral stylo-jugular venous compression syndrome. Due to the anatomical compression and the associated symptoms, surgical treatment is recommended. The proposed procedure consists of: * Bilateral styloidectomy to remove the elongated styloid process causing venous compression. * Shaving (partial resection) of the C1 transverse process to achieve complete decompression of the internal jugular veins. The objective of surgery is to restore adequate venous outflow and relieve symptoms related to impaired cerebral venous drainage.”
He sent me a 5 minutes video too if you wanna watch
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Hey i didnt read every message but early on you said you didnt have styloids that reach beyond 30 mm, but thats a requirement for eagles syndrome, not ijv compression.
Dr constantino has a video where he talks about this, usually its the first 15 mm that can cause the compression.
Source: YouTube https://share.google/PundY6tlcMWN8OTSI
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It’s an ‘average’ that some doctors use, but not a ‘requirement’ , as the angle and thickness of styloids can cause ES, it’s not just the length…just in case anyone reads this and is unsure…
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That’s good Dr Aghayev has confirmed it, sorry I missed that 
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@nemo - Dr. Aghayev’s report sounds pretty straight forward. I know you’re looking for a second opinion, but are you considering Dr. Aghayev to do your surgery or would it be difficult for you to travel to Turkey?
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The problem is the $20,000, I’m 20 years old and I’m completely on my own in this
I’m sorry that the cost is too much, we have many members in similar situations…
@Algobe has just seen this doctor in Spain, Dr. Manuel Bernal-Sprekelsen, although I presume that he doesn’t do C1 shaves, whether it’s worth you trying to see him?
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I have presented my problem to Miguel Ángel Arráez Sánchez s team, and theyve told me that if the pressure gradient venography (which I have in 9 days) is positive, they will plan surgery (free by my health insurance)
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@SCJeff This was actually a concern of mine as well because my pressure is better when I am lying down, and the dynamic cerebral angiogram with venous manometry is performed supine. I specifically discussed this with Dr. Chancellor beforehand. She made it clear that my surgery with Dr. Liu was not contingent on the angiogram/manometry demonstrating compression. It was being used as a surgical planning tool to give Dr. Liu additional information before surgery.
I think that is an important distinction, particularly for those of us whose symptoms and compression can be very positional.
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@nemo There is a procedure called a Sialendscopy that can assess the saliva duct and if there is a stone can many times remove it. I highly recommend trying to find someone who performs this procedure, the stones can take years to work themselves through the duct system on their own.
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Yeah, I’m going to see an ENT in 10 days. For now, the symptoms are good with antibiotics, and the inflammation has gone away. But yes I’ve decided to have the stone removed because otherwise it can cause me problems in the future, Thank you
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@nemo Sorry I missed that follow-up. I had a salivary stone in my parotid gland that took about five years to work itself out, and I had no idea what it was until much later. I don’t know if you’re having facial swelling, but I had years of it. In my case, much of the swelling was most likely related to my styloids since it started resolving after my styloidectomies. Unfortunately, before I understood what was going on, my parotid duct system became sealed and I ultimately ended up having a total parotidectomy.
So yes, you’re right, it definitely can cause issues later, and I think getting the stone taken care of now is a good decision.
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@nemo, I’m sorry you have no financial support at such a young age. I’m glad you’ve found a group of doctors who will plan your surgery. I hope/will pray that your venogram shows sufficiently good evidence that they will offer a surgery date to you.
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I hope that the venogram shows enough for the team to approve surgery… Do you know what experience they have with VES, he looks very accomplished?!
Let us know how you get on 
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