Isaiah
I totally agree!
Thank you.
I think itās in the Newbies Guide section- just on my phone so canāt check right now- thereās a research paper giving the success rates for surgery in one study. They were pretty high, & the ones which didnāt help so much the authors believed that it was because not enough of the styloid had been removed- so it does work!
I was getting pretty scary symptoms from my compressed jugular veins, I would say that is definitely not normal, nor common, no-one should have to live like that! After my 1st surgery I felt lots better within a few days- it does work, with a skilled surgeon!
Itās so discouraging, no matter how prepared you are it can all go out the window somehow when faced with a supposedly knowledgeable doctor who doesnāt believe you, but you have to be strong & keep pushing. Are there any skull base surgeons you could ask for a referral to?
Letās hope that the paper Vkm mentioned is helpful, fingers crossed for youā¦
Jules. What were your symptoms?
I had an almost constant off-balance feeling, I felt like I was a bit drunk, had to really concentrate on conversations etc., brain fog, pulsatile tinnitus, painful head & ear pressure, headaches, tiredness, dizzy spells, a weird feeling of being shorter/ close to the ground, but the worst ones were a sudden feeling of falling, even when I was sitting, & this scary feeling in my head at night, almost like my brain wa being rolled- hard to explain but it felt like I was dying!
98% gone after both surgeries Iād say!
Incredible, Jules, that those symptoms resolved 98%. You give so many of us so much hope. Iām currently waffling between hope and despair, so your dose of hope really helps.
Donāt give up hope, with the right surgeon it is possible to resolve ES symptomsā¦I only found out about the doctor who did my surgery through this site, & very nearly didnāt contact him, as one member had had surgery with him, & felt worse afterwards! Luckily I messaged him a little while later, turned out that with time heād improved loads, but didnāt come back on the site to share that!
I hope that you can find a doctor to help you, will be praying that you doā¦
Thank you Jules. Iām still on a mission to find one. I appreciate all your support.
Thank you, Jules. I see so many people on this site, you of course included, helping so many Newbies and Iām blown away by the kindness of all of you. Too bad you all didnāt go to medical school.
Hi Headcase!
Itās probably good we didnāt go to medical school as we probably wouldnāt know much about ES if we had! 
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That was very funny, Isaiah.
Let us know how your call to Philly went whenever you have a chance. Hoping it was reassuring 
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I spoke to Dr. Cognetti today via video chat. He was great and very kind. Unfortunately for me, he thinks that my symptoms are more TMJ related and doesnāt recommend surgery for me. I was very sad after I got off the call as I was so hoping that the surgery would be the fix Iāve been searching for over the last 5 years. TMJ problems is a real bummer as other than a life of a soft diet, I donāt think there are many treatment options. Sad girl.
Thank you to all of you for your help and support the pay few weeks. This board has been so helpful in trying to figure out if ES is the cause of my pain and Iām so impressed with all of you who take the time to reach out and help each other. Itās reminded me that good people exist and that there are those who will go out of their way for others. For that and your very helpful information, I am most grateful.
Hi there,
Sigh. Big hug. Doesnāt have to be the end. Iām sure youāre a bit deflated and confused. Itās a lot to process.
Thank you, SeeMomma. Itās really too bad. I was so excited to finally have a cure. I think you would call this a running leap backwards (if thatās possible).
Hey thatās creative!
Trust in the big picture I guess.
Be assured of our support. 
Headcase,
Just a thought - Itās worthwhile to get a second opinion. You are never obligated to see a doctor from whom you get an opinion. Would you be willing to take the time to have a chat w/ Dr. Samji? He may be less conservative in diagnosing ES than Dr. Cognetti is. Each doctor is a bit different in the criteria they use for diagnosing or deciding whether surgery would help or not.
Even though I was clearly diagnosed, I went for a second opinion (Dr. Samji was my second opinion). His surgical strategy made much more sense than that of the diagnosing doctor so I switched M.D.s & never looked back. I was very thankful that my mother-in-law pushed me to get that second opinion as I might currently be in a world of hurt from a less than optimal ES surgery had I stayed w/ the first doctor. Lest there be confusion, the first/diagnosing doctor was not Dr. Cognetti.
I would probably want peace of mind with another opinion as well. Youāre well aware of the possibility of a miss when speaking to doctors. Although, itās harder to believe with someone as seasoned as Dr. Cognettiā¦but like Isiah said - it could just be HIS criteria that you didnāt meet. Do you have it in you to go a little further with this?
I think that Dr. Cognetti is likely right. I told him that chewing increases my symptoms and he said this is not a typical aggravating factors and the distribution of my head pain did not fall into the typical pattern. I also told him that anti-inflammatories help and they should not help ES symptoms. He felt my symptoms were not conclusive enough to undergo the surgery. I would consider speaking to Dr. Samji though to get his opinion.
Hi Headcase,
Let me just say that there is no ātypicalā pain pattern for ES. There are symptoms that seem more common & those that are less common, so for any doctor to assume there is a ātypicalā pattern of any sort is incorrect, in my opinion. Anti-inflammatories do help some people w/ some of their ES symptoms so thatās another incorrect conclusion, in my opinion. Iām glad that Dr. Cognetti didnāt rush you into surgery if he felt you werenāt symptomatic enough, but, as you can see, I disagree w/ the major tenets of what he told you. I base my opinions on what Iāve read on this forum, in published papers, & on my own experience with ES. Iām not saying Iām right & that you have ES, but I do feel Dr. Cās definitive statements werenāt totally accurate.
Iām glad youāre considering a second opinion.
Big hug to youā¦
I did find that chewing made my ES worse, although not just chewing but the tongue movements- you know when stuff gets stuck in your teeth & you push at it with your tongue- so I do think it could be down to ES (canāt remember, sorry, do you have a TMJ diagnosis?). If you can it could be worth a 2nd opinion.