I am looking at having a revision surgery and have made contact with Dr. Samji who has offered his expertise to do the surgery with no real confident results except to say, I can tell he would be a very wise choice just by listening to his understanding of eagles syndrome.
I am trying to figure out my options in terms of Doctors who would be willing to do this surgery. My first one was intra-orally leaving still too much bone in there.
Thank you to anyone who would know about this.
Linda
I think Heidemt and some others had excellent results with Samji. Unfortunately, no doctor will give you an answer that they can cure you, especially with Eagles and even more so on a second surgery. Heidemt is a good resource for you because she had to have several surgeries. Hope you find your solution.
I sent Linda an email. I had revision surgery with Dr. Samji and had very good results.
Dr. Samji wanted to see the CT scan, and after he looked at it, he told me that he couldn't give me a guarantee, but that he was willing to try. That's all I wanted.
Thank you emma and heidemt for your thoughts and of course experiences. Yes I believe ES is obscure by nature in many ways both in diagnosis and treatment. I am hoping to make the most informed decision I can and I thank you for your ready responses.
Linda
I, too, recently learned that I might need revision surgery. I am hopeful it won't be nearly as painful as the initial surgery since the tonsillectomy was supposed to be a "one shot" deal. (That surgery was almost as brutal as my bunionectomies).
I had my styloidectomy January 2013. Approximately 9 weeks after that surgery I had a CT scan of my neck which included an ancillary comment that my styloid processes remained elongated as previously noted in a 2009 scan. I didn't think much of it since I was a) symptom free as to my Eagle's syndrome post-surgery and b) I thought the CT scan might have been referencing portions of my anatomy which weren't addressed in the 2013 surgery. (Oddly, my Eagle's Syndrome became symptomatic about 6-8 weeks after my 2012 revision cervical fusion surgery [I had my C4-c7 fused). My initial symptoms were actually symptoms of glossopharyngeal neuralgia (GPN) and focused on my left side of my throat and left ear back in 2013.
About 2 1/2 months ago, I noticed return of SOME of the GPN symptoms but on my right side of my throat. I did not have the same presentation as round one, nor the intensity, but the symptoms were unforgettable. I saw my ENT and he ran another CT scan, this time looking for any signs of the return. The radiologist came into the waiting area as I was leaving to ask me if my styloid processes had actually been "resected" previously or if I had a different procedure. I told him the surgery I had, as I understood it, and directed him to the surgical notes on file since the surgery had been done at that hospital. The written report shocked my surgeon when it noted that my processes were as long as noted from before the surgery.
The report states: "The bilateral stylohyoid processes are long and extends inferiorly to just above the level of the hyoid bone 1 cm deep in the pharyngeal mucosa, similar appearance to the presurgical study of December 25, 2009..."
The impression continues..." The bilateral stylohyoid processes are long and extends inferiorly to just above the level of the hyoid bone 1 cm deep to the pharyngeal mucosa, similar appearance to the presurgical study of December 25, 2009. These have presumably have recurred secondary to the fact that they were resected 01/19/2013." They also found unchanged needs of right vocal cord paralysis. [My right vocal cord was paralyzed as a result of my 2012 revision surgery for my cervical stenosis.
I, and my surgeons, have become accustomed to me having the "rare and highly unlikely" path as to anything and everything pertaining to my musculoskelaton system. I would like to get some sense of "commonality" for this problem to grow back AND to grow back in about a year. (Additionally, the scan about 9 weeks post-surgery made reference to the elongated processes but the scan wasn't looking for that issue so it may have grown back even sooner).
I would love to learn of other's needs for revision surgery and the associated time frames. Thank you so much.
Benicia
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Dear Benicia
Below is a link which details patients with eagles cases and outcomes. It is very well written and follows the known procedures available for this condition. It also shows they were followed-up on after 12 months. Not one had any mention of regrowth. Nerves take a long time to heal and CAN heal. It depends if your surgeon actually was successful at getting more of your bone out.
After 2 years from my first surgery I knew I was not progressing any further that is when I knew something else needed to be done. Through this site I was able to find help.
Now 8 months out of my revision surgery I am healing and changes seem to come about every 3 months with set backs and then forward progress. I now no longer have the pain focused at the back of my tongue/tonsil bed area. It has focused more up to the roof of my mouth as if I burned it there. But I know I didn't. This is nerves coming back and healing. I am hopeful that 12 months out of surgery I will have even more improvement.
Keep at it and find out your answers, I spent so much reading about other cases on line as well as others on this site. Very helpful community.
Linda
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2637062/#!po=6.25000