Greetings to everyone here,
I'd like to start by saying thank you to everyone who has contributed to this board and commented because I have learned a lot reading over everything posted here and it made me feel like I wasn't alone suffering from something that is incredibly painful and that no one seems to believe exists.
I started having pain in my neck almost two years ago. I would have pain on rotation, pain whenever I tried to exercise, headaches, and muscle spasms and tension that would lead to my entire neck, shoulders and upper back spasm-ing and locking up or just random intense bursts of pain. I assumed that having an active lifestyle and a high stress job I was just feeling muscle tension from exercise and job stress and that my neck, shoulders and upper back were responding to that stress. So I did what was logical at the time to me.
I started seeing a General Practitioner for muscle relaxants to help treat the pain, and a Physical Therapist for exercises, stretches, and treatment and although these did offer some relief in was short lasting and never completely relieved the problem.
In addition I also started going to an acupuncturist, a chiropractor, and a masseuse outside of my healthcare system. The chiropractor didn't seem to have much effect, the masseuse seemed to help but only for a very short period of time and the Acupuncturist seemed to have the greatest effect but even that would only last for 48-72 hours before the symptoms returned.
Eventually frustated with the lack of results, I spoke with my GP and she sent me in for a mid-back MRI. Nothing unusual showed up on that so she then referred me to a Pain Management Specialist but that specialist required a X-ray of the cervical spine. The radiologist report states "Elongated styloid process. In appropriate clinical setting this may be seen with Eagle syndrome."
When my GP saw this she said she didn't know much about Eagle Syndrome other than it being very rare and it's unlikely I had it except she had one other patient who possibly had it and it turned out they hindded had it so it should be investigated.
This lead me to this terrific forum which has provided a great deal of information and been of a great help to me. By reading on this forum I realized that a lot of things I hadn't realized were related to my neck pain, i.e. incredible explosive pain on yawning, a feeling of what I originally thought was muscle tension in my neck but really is a foreign body sensation, pain in my rear of my jaw etc. were all realted to the same problem. I should say that my pain at this point is nearly debilitating and effects me everyday. I haven't been able to exercise for more than a year, It seems like long car and airplane flights rides make it incredibly inflamed and i am required to travel an incredible amount for my job.
Because of this forum I requested a CT scan and the results from that are that "Classification/ossification of an elongated right greater than left styloid process/calcified stylophyoid ligament is noted. The right-side styloid process measures proximally 4.5 cm, and the left styloid process measures approximately 3.8 cm (normal less than 3 cm). No definite vascular compression is appreciated."
I took these results plus the actual scan to an ENT Dr. last week and had a long appointment with him. He was an outstanding and compassionate Dr. and spent a lot of time with me but in the end he didn't believe I had Eagles because I had never felt a poking in my throat/difficulty and pain on swallowing from my styloid process. He said he had probably seen less than ten patients in his career with related symptoms but that only two of them he had operated on because the others he wasn't convinced were actually Eagles. He said that he thought that Eagles couldn't be the cause of all the neck/shoulder/upper back pain/tension/spasms that I have experienced and that he would need me to pursue every other possible approach before he would consider it as Eagles. I said I totally understood his position but there was a recognized specialist in Eagles, Dr. Cognetti and I was going to get a second opinion from him.
In the end though he did a physical examination in which he couldn't feel my styloid process in the back of my throat but then did a lidocaine injection as a test. Within an hour all pain and symptoms on my left hand side (which had always been the far worse side) were completely gone! Unfortunately my right hand side was actually the worst it has ever been for the next day or two. For the first time ever I had pain on swallowing and the foreign object feeling on that side. Sadly by the next afternoon the effects of the shot on my left side had completely worn off and I was back to my normal level of pain. The right side remained inflamed/bothered for an additional 24 hours but by eventually those symptoms subsised.
Now I am in the process of sending my CT scan and prints of the radiologists remarks to Dr. Cognetti to see what he says and if he thinks surgery is an option to remove my styloids. I am SURE that this point they are the cause for all my problems and that removal of the left would do wonders for my quality of life.
I do have a few questions at this point. Other than my CT scan CD and print outs of my two radiologists reports I don’t have much other actual documentation does anyone who has been to Dr. Cognetti know what he might specifically like so I can start working on it now?
Also it sounds like the general process for those who have to travel to Philadelphia for surgery has generally been, then submit their information, Dr. Cognetti looks it over and then calls them to discuss their results and what he see as the best course of action. For those that he does surgery on if they are out of town do they need to do an in-person appointment before the surgery? I’m just curious what my process might be since I will have to travel to him for any appointments and the surgery.
Thanks a bunch for the help and I look forward to any responses.