I’m not surprised to learn Dr. Coniglio is no longer doing styloidectomies. It also wouldn’t surprise me if he retired tomorrow. He’s up there in age. Plus, he’s the head of Lipson Cancer Center in Rochester, so I know he has his hands full with cancer patients.
To be clear, I can’t say that Dr. Coniglio made a surgical mistake. I can say, however, that he was incredibly dismissive about my post-op complaints. But even with the complication I’m currently experiencing, I’m glad I had the surgery when I did. I don’t know how much longer I would’ve lasted without it after suffering 6 years of debilitating pain on top of other chronic health issues.
If you haven’t already, give Dr. Bender’s office a call.
@Brandy - Are you feeling any better since your first styloidectomy/IJV decompression surgery? I know you have other things going on as well, but I’m hoping there are some symptoms that have reduced/resolved for you.
Thanks for reaching out!! No, unfortunately not. Nothing about this surgery helped, not even the nasalplasty. Very disappointed by the follow up care. I’ve been trying for over a month to get answers and never a return phone call, email or portal message. My repeat ultrasound came back with the exact same numbers as prior. Exactly. The velocities changed, which is quite odd, indicative of compression. My report shows bilateral flattening of the jugular’s. No one has responded to my concerns. It’s like I never had surgery. I have a telahealth with Dr. Ruhoy tomorrow. Quite upset over the entire situation.
So a few days ago I read an old post here where someone worked with their PT to activate small neck muscles using a blood pressure cuff. Part of things getting worse for me has included a more pronounced right lean of my neck and pain with even small impacts like stumbling, so it thought I’d try activating small neck muscles by very small movements or even just thinking about them.
First– it’s working. Some of my neck muscles were so inactive they were leaving dips in my neck. I felt a few of those dips fill out suddenly as muscles “turned on”. My neck is feeling more stable, less painful, and less prone to feelings of pressure at the base. If this can continue, I’m more confident that I can make it to October 2 without incurring a worse injury.
Second–now that my neck muscles are a bit more awake, it’s revealed an obvious strip of several inches on the right side of my neck where the muscle just isn’t there.
This is the same area that was violently over-stretched when I fired that shotgun. It’s also the same area I experienced excruciating pain after carrying and dragging some heavy objects in the fall and after my former PT pushed on it this January, causing worsened drilling pain under my ear and spasms on the left side of my neck.
I now have a theory that I’m experiencing right sided neck pain due to both Eagle Syndrome and an injury to my levator scapulae. The levator scapulae attaches at c1-c4 and the shoulder blade. It can create pain in the exact pattern I’ve been experiencing, which is very similar to ES (minus the parts where I almost pass out if I extend my neck forward and twist my chin up, etc). I will bring it up at PT tomorrow, and I made an appointment with my neck specialist for next week. Hopefully with this new information they’ll know what to do, since no Dr. prior to this has thought I had an injury that couldn’t be solved by PT and a trip to the therapist.
Thank you everyone! Even the old convos are a helpful source of information.
@Brandy, I’m so very sorry! Have you tried sending an email to Kristen Curry - kcurry@denversinuscare.com to share your frustration?
We have another member @stuuke who’s had a similar problem with that office. It’s very discouraging & just not right to have to work so hard to communicate especially after having surgery with a given doctor. The fact that follow-up is lacking is also wrong.
Have you considered getting an opinion about your current situation from Dr. Costantino or Dr. Nakaji? It seems at this point, that would be worthwhile. I know how much time you spent researching & considering your doctor options before you had surgery, so it’s very disappointing to know your outcome has been so poor. I am very sorry.
Good work being resourceful, @Ifrit, & working to figure out what could be contributing to your symptoms & how to fix at least part of the problem yourself! I hope your doctor & PT applaud your diligence in treating yourself & can help expand on what you’ve learned so you get even better results than you already have.
Kristen phoned me Friday out of the blue to try and get me in with Dr. Martinez. I laughed. She told me Kate the office manager and another is no longer there. There’s a real issue with this office and leaving Veros changed not one thing. I had an appointment with Dr. Ruhoy yesterday. She said it’s a real problem and even she has issues. He’s taking on more patients while not keeping up with his current patients. It’s not good. These situations always have consequences. I’m one of them.
Lately I’ve had pretty good luck lately with getting Allison to respond to messages through their portal. Fortunately I haven’t had to call them for anything. Last summer I was as desperate as I’ve been an in a really bad place and got no response from them.
You’ve “hit the nail on the head” re: Dr. H’s med practice management. He is a wonderful surgeon & caring physician, but that is definitely a shortfall in his practice. He’s hired Dr. Martinez, & from what I understand, is working to add some other specialists to broaden the scope of his practice so more diverse care can be offered to the patient population who come to his office. That’s likely one way he’s working to improve the level of patient care there.
It’s possible Dr. H is a bit more conservative in shaving C1 than some of the other surgeons who do IJV decompressions which may be why we’re seeing members who’s surgical outcomes aren’t as optimal as hoped. That said, we also have quite a large population who’ve had excellent results from the surgeries he’s done for them which just goes to show that no doctor “bats 1000” over the course of his/her medical practice.
I feel sad for our members who are still suffering after a long anticipated surgery & always wish there was more we do via our forum to help their recoveries improve.
Thank you. I do have a follow up with Dr. Costantino next month. He knew I was headed back out to Denver to get post op imaging. I see both he and Dr. Tobias. Dr. Ruhoy is a gem. I’m not sure I will be able to afford to continue seeing her. Her practice was bought out and she’s under Atria right now. She’s ordering a PET brain scan and full body MRI and ordered more labs. I had a muscle biopsy done in Seattle. She thinks I’m dealing with a post exposure neuromuscular infection. She suspects as well I have some sort of vasculopathy that may be autoimmune related. Good grief. This stuff never ends!
@Brandy - I’m glad Dr. Ruhoy is being thorough in trying to root out the cause(s) of other symptoms you have & that you have a follow-up w/ Dr. Costantino. I hope he’s got some answers that you haven’t gotten from Dr. Hepworth. Please let us know what you learn from Dr. C after you see him.
Hi! First let me say breath….my journey to find answers took 8 years, 10 plus pain, many treatments that made me worse, doctors telling me there were no answers…,I could not work, move my head nor drive. I gave up my car it was so bad…..I as the pain traveled down my body I could not raise my arm, had sever back pain but noting worked until I got my Eagle diagnosis and both sides removed. I kept a diary which helped figure out what movements of combo of movements caused pain to get worse….talking with my head turned, massage near my neck or my face in a massage face cradle and lifting weight especially over my head. This info helped in my diagnosis. Secondly, I found for me oral stertiods would lower my inflammation to allow me to have the styliod not bump into my nerves and gave me more flexibility to move. My primary doctor gave me a medrol dose pack at first but over the course of time when I had a bad flare up I could take about 20 to 30 ml a day and ween off after 48 hours…..also muscle relaxers helped….after surgery it took time to unwind all those tight muscles and get them to be healthy again. The good news is you have a group of wonderful people to support you….know there is hope…wishing you well….
Last night I was doing my myofunctional therapy exercises with my head slightly back propped up on a cushion, which I would usually never do. Something about the angle worked though, and I felt something at the back of my right neck/throat slide. It hurt more at first, but then it was like my whole body just started untwisting. Pain and tension melting away. You know that feeling when you’ve been tensing your shoulders for too long unconsciously and you let go? My whole body feels like that, still, 18 hours later.
I can still feel my hyoid moving around in there somewhat.
My theory is now that I actually blasted my hyoid out of alignment with the shotgun mistake, and since then it’s been slowly twisting my whole body because of it’s enormous fascia connection, also increasing the pressure from my calcified stylohyoid ligaments. That’s what led to me injuring my levator scapulae trying to move heavy stuff months later. That’s why my pain and dysfunction has been so severe. And that’s how my PT accidentally made me worse. My hyoid wasn’t supposed to be in the spot she pushed, but it was, so she triggered massively worse Eagle symptoms.
My hyoid position must have been slowly improving over the last 3 months of myofunctional therapy and the last few weeks of posture exercises.
The trick now will be to get it to stay there.
I’m now foreseeing a much more tolerable wait for my consult with Dr. Constantino.
That is fantastic news, @Ifrit! I’m so glad you’ve done your own experimenting to see if you could help yourself, in addition to the myofascial work & it’s paid off. You must feel so relieved!! I hope the relaxing you felt last night that has remained into today continues until all the areas that were tight & excruciating let go.
Well, my MRI said my brain is poking through my foramen magnum by 8 mm. This might explain Monday’s ER trip with neck pain, nausea, pins and needles/numbness in my neck, lower face, and arms, vocal changes, and flashing floaters. What remains to be seen is whether the herniation is due to IH (and thus Eagle Syndrome) or whether I just have bonus Chiari malformation.
I still feel sick. I’ve now lost the ability to sit or drive. Reclining or standing/walking only. No Dr. available until the 22.
