Before I jump into this whole thing, I absolutely wanted a second opinion from a top notch surgeon who could read my scan and go from there.
I was fortunate enough to have this physician give me a call, walk me through what he saw on the scan and give me his two cents.
In a nutshell, he said he would "go for it".
Because my symptoms are neurological in order (vs the typical facial pain / etc), he acknowledged that I was a difficult one to diagnosis.
Everything he saw on the scan suggested Eagles though.
However, because you can not see the nerves and/or irritation on the Styloid, this more becomes a "diagnosis of exclusion".......meaning you have tried just about everything else.
Well......I sure the f### have :o(
So, I have determined the reward / risk is definitely worth it and I will be scheduling my procedure with Dr. Samji in roughly 6 weeks.
I do not know if it will fix anything, but the after effects of a scar don't seem to be too much of an issue........and with 50 mm + Styloids (and wide and curved), both doctors seemed to think I may be on to something.
Only time will tell
I will keep you guys posted regarding when my actual date of surgery is. For now.....say some prayers for me. I need a break.
Hi Go Cougs,
I had the same call from Dr. Cognetti as well as my "second opinion" after Dr. Samji had responded to my case much sooner. I was most appreciative of his input. I do have the pain that goes with this syndrome. I am glad you are going ahead with everything. I just did my pre-op clearance stuff today with my regular Dr. here in Anchorage.
Again, my surgery date is Nov. 13th. I wish you well, and am very hopeful for you and myself for some more resolution to my pain.
All the best,
We will be thinking and praying for you!! That is awesome that Dr Cognetti reviewed your images with you by phone. Now it is count down time to surgery!!! Afterwards, Will Dr Samji let you have the styloids in a jar!..:)! I think it would be cool to keep. Show off your trophy to everyone! I know it’s been hard work to get those styloids!! Toothpicks, anyone!!!..lol!!!
Glad to see you followed your own gut feeling! I truly wish the very best for you and that all the neurological problems can be resolved with your surgery. I look forward to reading your post-op discussion with the hope that everything went well and that your problems have subsided. Will keep you and your family in my thoughts and prayers with the hope that all will turn out for good. May you have a more normal and happy life in the future with a lot less pain!
Very exciting, and I think at this point, you can say you've done quite a bit of research and have done your work in seeking opinions.
What are the steps to decision making again...?....Identify the problem, gather information, list the possible solutions, decide on the info and implement a solution...something like that! The decision gets easier with the more effort you put into each of those ingredients of the process, and you've done that. No 'right' answer can jump out with a rare disease like this. You make the best decision with the information you have, and you go forward.
I'm really looking forward to this surgery, and will certainly be wishing you the best!
Lol keep the styloids in a jar? I think he is going to burn those styloids in the fire pit after we annihiliate the lobster and steak!
This is great to hear! Congratulations!
Selfishly, I am also glad to know he personally called you! I am waiting for him to review my scans and make a recommendation. How long did it take for him to get back to you after he rec'd your images? I have called back once and was told I am in their computer system awaiting his review.
Would Dr. Cognetti have performed your surgery if you had chosen him? In other words, will he do a case that is atypical ES and more neuro symptoms? Mine are mostly neuro, at least the symptoms that are disabling.
Does anyone know if Dr. Cognetti will speak to another doctor? Namely,my neurosurgeon, who does do styloidectomies, but wants me to have a catheter venogram to prove that the jugular compression is the cause of my Intracranial Hypertension.
Sorry for the second reply! I am sure you listed your symptoms on another post, but could you tell me what your main neuro symptoms are?
Did you post any images on here previously? I want to go find them if you did. I am about to post mine.
Main symptoms are:
1) Pulsating / Vibrating / Inflammation (Nerve Irritation) in left ear which pulsates louder when symptomatic
2) I hear crunching sounds, gravel like sounds in my right ear.
3) I often see "stars".....like a boxer getting punched. Except mine happen when I reach down to pick up a pencil or something else benign like that
4) Laying down flat makes me exponentially worse
5) Extreme (and I mean EXTREME Fatigue
6) Complete Eustatsian Tube Disorder with ear fullness
7) Horrible tinnuitis in both ears, with the tone changing periodically
8) Motion sensitivity, light vertigo (not true spinning)
This is just a sample of the list......I posted elsewhere all of them, but probably gives you a pretty good idea.
Basically, I feel like shit. How is that for a list of my symptoms :o)
Hope this helps you!!!
Thanks. Many of those are familiar. :(
I have surgery w dr cognetti on nov 22 preop test nov 12… Ditto to all above … One suggestion I keep going back and trying to find people who r postoperative to tell us more on recovery and such… All of us who are having these (horrible)things removed should keep posting postoperative . I’m sure alot of people that after healed and living normal again really don’t want to think about or relive. But sooo many people have questions about this “thing” and the recovery feeling and such
I should have kept a better pain journal so I could tell you more. With my first surgery, I had some relief immediately, and I basically felt great after a week. My second surgery was a much tougher recovery, but I think that may have been my own fault. The first surgery was so easy that I actually walked all of Philadelphia a day after my second surgery. Didn't want to miss my chance to be a tourist! I definitely don't recommend that attitude. Take it easy for the first few weeks, and I bet you'll feel great in no time.
My surgery was external with Dr. Cognetti in PA, and the most recent one was March of this year. Now I get rare twinges of throat or ear pain when I've been especially active. They're very small and rare and easy to ignore. Overall, I'd say I am over it.
I have surgery w dr cognetti on nov 22 preop test nov 12.. Ditto to all above .. One suggestion I keep going back and trying to find people who r postoperative to tell us more on recovery and such.. All of us who are having these (horrible)things removed should keep posting postoperative . I'm sure alot of people that after healed and living normal again :) really don't want to think about or relive. But sooo many people have questions about this "thing" and the recovery feeling and such