I’m so glad you’ve made the most difficult decisions - first, to proceed w/ surgery & second, choosing a surgeon. That must feel like such a relief! Dr. Cognetti will do well for you. He is an excellent surgeon plus much closer to home which means less distance to travel. Please remember that he books his ES surgeries fairly far in advance since he only does them once a month so make sure you get on his schedule for Aug/Sept as soon as his office will book you.
Please keep us posted as to how you’re doing as time passes & how your “prehab” works for you also as your surgery date approaches, &, of course, post op. We are here to support you every step of the way.
How nice! My arms and legs are stronger and my posterior neck is getting better. However, I of course, have trouble flexing my cranium and rotating right.
Good advice about booking out now. Given how you felt weak after surgery, I felt that I should try to get as strong as possible beforehand and have some great PTs that are respectful of eagles but strengthening me nonetheless.
They just started elective procedures at Jefferson June 5th which was my surgery date. Guess I did not feel like be one of the first cases…
My husband is still waiting to get a consultation with Samji. We have been back and forth with insurance the last couple of weeks just to order a CT Scan without contrast. The radiologist called to explain that they did not see anything unusual or anything suggesting Eagles Syndrome, but also that they have not seen it before and they are not diagnosing anything. It has discouraged him a lot but after reading some posts on here about CT scans being “unremarkable,” I am still optimistic that Samji will speak with him about it. Communication is so poor between his PCP and the hospital it wouldn’t surprise me if they neglected to provide the report we need. Its hard to believe that we finally know what is going on and it is taking so long to do anything about it. All of the medical professionals keep trying to refer their own specialists, as though the general public is incapable of making their own healthcare decisions.
The diagnosis “process” can be so darn frustrating. Even if the radiology report doesn’t mention ES (& I’m shocked the radiologist has no knowledge of it!!!), Dr. Samji will read the scan himself & make a determination based on his experience. Tell your husband not to worry. Dr. S doesn’t give a lot of weight to CT scans. On the slim chance that Dr. S declines your husband’s case prior to reviewing the scan because there is no mention of ES in the radiology report, I would stand your ground & let him know that the radiologist in question was unfamiliar w/ ES & didn’t know what to look for. Just make sure the scan covers the area between the hyoid bone & skull base. I’ll PM you my 3D scan so you can see the area I’m talking about. If need be you can show it to the referring doctor so he’s clear about what you’re looking for & orders the correct type of CT scan.
I really appreciate it. From the way the telephone call went with the radiologist he probably will need another scan. During his CT appointment he showed the nurse the email from Samji’s office of what needs to be in the report and I don’t even think that was sufficient to get it. I will update when we have more. Thanks again for your help
The radiologist even saying that is a big red flag and I would not give any weight to her opinion. If she never has seen it, how will she know what it looks like? Get the disk (and report) yourself from radiology and send it to Dr. Samji (dont trust them to do it) and let him read it first before letting him deny you. Ive had that same experience with medical professionals trying to keep you “In-house” and send to their own people. Thank god we are capable of self-referral!
My PCP reluctantly ordered the CT scan and even wrote in visit summary he basically was humoring me and he thought my pain was from TMJ. Luckily the way the CT was ordered specifically stated for Eagles’ Syndrome. Low and behold I proved him wrong and the radiologist report did show eagles. I sent my disk to Dr. Samji and he reviewed in less than 2 weeks. Hang in there and keep pushing.
Have you seen your PCP since? Did you say I told you so?!
I wished I could’ve seen the 1st consultant I saw again- he didn’t believe that the styloids could compress blood vessels, which is what I suspected, but agreed to refer me to someone more knowledgeable, the Ct with contrast I had then showed bilateral jugular compression!
We got the report that states he has 4.6cm styloids on both sides. Also sounds like maybe some disc degeneration? But it looks sufficient to send to Samji, just filling out the paperwork now to get in the mail. The person reading the radiology report had no idea what they were looking for is what it sounds like. They said there was nothing out of the ordinary, meaning they already knew how long his styloids were from his previous scans. His PCP has been supportive, actually seems really disappointed because he had someone with Eagles a very long time ago, he sent him to the ENT to rule out situations like that and is upset no one with an x-ray caught it I think. He has been trying to figure it out for years. Overall, grateful to be making some progress.
4.6cms styloid processes, & nothing out of the ordinary! God job you know what you’re dealing with & what to do, hope you hear from Dr Samji’s office soon!
Luci,
Dr Samji requires CD of the CT be sent to him to do full review. He wont go on report alone so hopefully you have that too. I had radiologist and the DDS jaw specialist at oral health center say the same thing about the calcifications shown on the tomography 5 years ago when I asked them to review this past December. They see it but dont understand or have the experience that it is not normal to have this especially in light of alot of pain. Glad you are getting on the right path to resolving this. Best of luck on your journey.
I have seen my PCP recently requesting a covid antibody test which he reluctantly ordered and tried to disuade me from getting. Having worked in infectious disease, I made it clear I understood the limitations of the testing and understood the results. I handed him the operative report from the ES surgery and he was pretty much silent about the whole thing. I tried to show him the incision and he wasnt interested in looking much at it. Given he was poo pooing my request for covid testing, he has not learned his lesson with me. Generally he has been a decent internist but I am looking for a new PCP for me and my daughter. I dont like having to argue for proper care, especially testing. I have to say I enjoyed shoving that report in his face.
This was the antibody test (blood) I insisted on. It primarily can detect if you have been exposed in the past (can see current too in some cases) although there is some questions about the overall reliability and accuracy of the tests. Since they don’t really know how long the antibodies are protective in our systems, they don’t want people to think they cant get it again and have a false sense of security. I was hoping for a glimmer of security. In my daughter and my case, it was negative. I cant imagine in UK they are anywhere near the chaos in US. It is a nightmare with absolutely no coordinated plan and no where near the amount of testing that should be done. Having worked in infectious disease field, what I am seeing right now is downright scary.
It is really disorganised here- after all these months they still haven’t got PPE sorted properly for everyone who needs it! They’ve had to abandon track & trace, chop & change their minds about what we can & can’t do…rushed to ease lockdown just because a government advisor had broken the rules & gone out travelling while he had COVID & they wanted to distract everyone from that…sigh!
Sorry that you didn’t get any reassurance from the test results, take care
