I finally saw Dr. Cognetti 2 weeks ago. I really liked him as much in person as I did on the phone. He is willing to do my surgery, which would be removal of the left styloid.
He said my imaging and symptoms are "textbook" and that the base of my left styloid is the thickest he has ever seen. he pointed that out and compared it to the thickness of my jawbone.
My left styloid is compressing my internal jugular vein. I also have Intracranial Hypertension (IH) and a shunt that is only helping about 50%. Dr. Cognetti does not think the one sided jugular compression is causing the IH. He did not say it is impossible, but said if surgery helped that, consider it a bonus.
I have two more appointments with a Skull Base ENT another Neurosurgeon in January who know a lot about the shunts, IH and it's relationship to the compressed jugular and Eagles Syndrome. Dr. Cognetti was in full support of those second opinions and gave me extra business card to give them, in case they want to discuss my case with him.
I also have EDS, but that did not frighten him away!! He did, however, warn of mucking around in there with my connective tissues being weaker than normal. I have had previous surgeries with no ill effects or healing problems and he did acknowledge that.
SO... more opinions on the way and then he said to just call and schedule surgery if I choose him to do it.
I had posted back in September, I think, with images of my styloid and jugular compression.
Good luck, he is very interested in Eagles syndrome patients, thankfully. Keep us informed of how you do and who you choose and how you recover if you have surgery.
Great news Kitty! Thanks so much for your updates & yes please keep us informed along the way. We really appreciate it. Keeping you in my prayers!
emma said:
Good luck, he is very interested in Eagles syndrome patients, thankfully. Keep us informed of how you do and who you choose and how you recover if you have surgery.
Thanks Kitty for posting. Sounds like you are on the right path. Hopefully you will receive good news from the other docs. Take care. Sending positive thoughts.
I’m trying to schedule an appointment with Dr. Cognetti. I have called to his office and secretary told me that they wont schedule appointment for ES before they get my medical record by fax and radiology on disk by mail. I did’t thought it will be that complicated.
It’s gonna take weeks to request all my records from many offices I went during last 5 years, and mostly it was wasting of time. I have tons of records and most of them not in English. And fax - what is this? I’m not sure if I can find any DVD-rom to wright my imagery on disk. Is it 2019 of 21st century, or hospitals still there in the past? lol.
Now seriously, if any one have Dr’s direct email< could you share it in private message? it would be much appreciated.
Take heart. I don’t think Dr. Cognetti’s office wants all your past medical records. I think they only want a copy of your diagnostic CT scan & the radiology report that goes with it that confirms you have Eagle Syndrome. The radiology lab where you had your diagnostic CT scan done can give you a copy of your scan on a CD or could send the scan to Dr. Cognetti’s office via email along w/ the written report. You just need to request it from them & give them the proper email to send it to.
Dr. Cognetti’s office may not have communicated well, but I don’t believe they want any other medical information than what is relative to your Eagle Syndrome situation at this time. Any surgeon you contact about ES surgery will require that information because they want to review it before talking to you about surgery.
I had my two surgeries with Dr. Cognetti, after 8 doctors telling me it was something made up by my mind. I almost went crazy. Fortunately I found him through this group. I cried and cried of pure relief. My appoinment was scheduled very quickly and I just needed to bring a disk copy of my CT scan and nothing else. A few questions about what could happen, pros and cons, what I wanted and that was it. Unfortunately, 5 years after, seems that the torture is coming back. My right side is on fire. I am not even sure if this can actually happen, but I vaguely remember Dr. Cognetti mentioning something about it. It is awful.
I’m so sorry you’re experiencing potential regrowth. Dr. Cognetti does leave an inch of the styloid behind (natural styloid length) when he operates so there is a very small chance of regrowth in some people. We’ve even got a couple of forum members who had regrowth after styloid removal at the skull base. We’re not sure why it happens, but the only thing I can guess is that whatever caused it the first time hasn’t been totally alleviated so the body thinks it’s protecting itself by laying down extra bone in that area. The fact our bodies are designed to heal themselves is awesome but sometimes they try to do too good a job.
There’s another forum member who had surgery in 2015 who’s experiencing symptoms of regrowth at the moment. Though this doesn’t ease your pain, it may be comforting to know others are going through what you are.
Are you scheduled for a follow-up CT scan to see what’s happening with your styloid(s)? If not, it would probably be worthwhile.
Thank you so much for your message! You have no idea how reassuring this is. My growth could have been caused by two massive surgeries on my neck. The whole thing is made of titanium.
Although that stabbing is a very particular and recognizable pain, you cannot stop thinking about many other scenarios. I searched yesterday through the group, and I couldn’t find anyone with possible regrowth. Needless to say, I have a situation of terror and pain combined. I called Dr. Cognetti’s office and since my surgeries were 5 years ago, they cannot answer my questions on the phone. I have an appointment with the doctor who first diagnosed me in my state. That way I can have a scan done before traveling to Pennsylvania. In the meantime, I cannot sleep. I haven’t heard about anyone in this situstion. But then again, we are not exactly “comon” people" if we came out with this thing in the first place. Sighhh…
I am not doing well today. Very anxious and with a very high level of pain. My new appointmens is on April 29th. Could any of you recommend a thread for anxiety?
Below is a link to one anxiety discussion on this forum. You can type “anxiety” or “regrowth” in the search box that comes up when you click on the magnifying glass at the top right of this page to see other discussions. The bottom line is that some people resort to using anti-anxiety Rx meds for a time to help alleviate anxiety while going through ES. One thing to consider is that the vagus nerve is often irritated by elongated styloids & part of its function is anxiety control. It is possible that you’re more anxious than usual because of a disturbed vagus nerve. You can Google vagus nerve to see all the things it can affect. It’s rather interesting, really.
I’m also including a link to some posts regarding regrowth.
Comfirmed.
I have regrowth.
Not only I developed a rare condition. Now I have a rare occurrence amongst a rare condition.
I wish I could cry, but I have this weird feeling of calmness. It is hurting like hell and it will hurt more. But for the second time in my life I feel I skipped something deadly.
The anxiety now is considerably lower. The pain, higher.
Did you have intraoral or external surgery? Is your original surgeon willing to do a revision surgery for you? I’m so sorry that you have experienced regrowth! So frustrating for you, Mayela!
Please let us know what you decide about surgery & what Dr. Cognetti says about doing it a second time.
Hi, Jules and Isaiah!
Both of my surgeries were external. Right now I am being treated by the only doctor who was able to find out what was wrong with me. The minute she diagnosed me, she said point blank she wouldn’t dare to touch me (in terms of surgery), but she made my pain and inflamation bearable. She sees me again on the 29th. I was famous; she never thought she would encounter an Eagle in her life. Now I am even more famous. I have repeated the feat yeat again. Sorry. I don’t mean to sound cynical. I just want to add a little humor to the equation. Dr. Congnetti has a long list of patients waiting. I pray someone cancels in May. But definitelly, I will BEG for another surgery. Medication is like a small bandage treating this. The pain is stronger than any pill. Does any of you feel much worse at night?? I feel like someone is drilling my ear, and my tonsils feel like 10 pounds each around the time I go to bed. Of course, it is always horrible, but nights are kind of special.
I think things are often worse at night because we’ve been up all day using our bodies & thus creating further irritation in an area that already has a problem (kind of like walking around all day w/ a newly sprained ankle vs elevating & icing it - swelling will be worse at night.)
Dr. Cognetti typically shortens the styloids back to their normal length (1" or 2.54 cm) rather than removing them to the skull base. Perhaps that’s why you had regrowth? Even if he’s willing to redo your surgery, he’s likely to still leave an inch of styloid behind which could again regrow since you’ve now shown a tendency for regrowth. There is nothing wrong w/ his strategy as many people have had good long-term results, but in your case, that approach didn’t work well.
Would you consider getting an opinion from Dr. Jason Newman who’s also in Philadelphia at U of Penn? He has been known to cut the styloids back to the skull base instead of leaving stubs that can regrow.
Thank you so very much!! I will definitely explore this option. As for the night situation, your explanation makes lots of sense. Thanks again Isaiah and I will keep you guys posted!
