I have been compiling the doctor spread sheet for a year now. Some of you know that I had intraoral surgery with my ENT here in Fl about 4 days after I found this site. Had I not been in pain for several years and found the website sooner, I may have used one of the above doctors. However, I did get better and I was feeling pretty good, but now I need your help. Since my surgery 02/20/2013, I had a long recovery and had a feeling like a stick in my throat near the thyroid area approximately, and I had a pain radiating down my clavicle into my shoulder blade and the front of my chest like a badly positioned neck after sleeping. Well the stick feeling went away for awhile but not the tightness in the neck area. I had PT and one day something popped. It felt like something along the front side of my neck pulled loose. Now, my neck feels better, but the stick feeling came back. I stuck my finger way down along the tonsil below the tongue and close to the neck bone to find a bone sticking straight up towards my tonsil. I believe this is the stylohyoid ligament that the doctor released when he removed the calcified styloid(partial. I thought that he should have remvoved part of the stylohyoid because it was very thick and stiff, not like the stringy ligament on the other side. So, what to do.In addition, I have developed a nodule of some sort in my thyroid area, and I have no thyroid. I had it removed due to cancer 3 years ago. Not to worry, yet, because my blood work is clean and it just appeared since my Eagles surgery, and Ultrasound report was not immediately worrisome, so it could be an irritation of the above or some scar tissue. That will be checked out again next Endo visit.
I want to contact Dr. Samji and Dr. Cognetti. Those of you who have done so, did you get your CT scans first or just call the doctors and have them order the scans?. I live in Florida, so either trip will be a long one. I want to get as much done ahead of time as possible. I am going to try to get a scan from the skull base near the ear where the styloid partially remains down to the hyoid bone where this ligament is attached. It sticks up like a tree stump with a larger base sort of like some of the larger trees, like oaks. Of course, the trunk part has no branches because that is where it was snipped,
I am having a lot of acid reflux and gas as well as plain old lingering dull pain mostly sometimes sharp.Maybe neurological or maybe just something interfering with my hiaetal hernia. Darn. When I touch the spot on the outside, I get a pain all the way up to my temple. I don't get it if I don't poke, so I don't poke.
Please those of you who had to travel to see those doctors, tell me most about what you needed to send and how you contacted the doctors. My spouse says we can go to either one and I plan to hunker down in their town for a couple weeks before heading home after. I just need a little information on how some of you started the process. Thanks I know this was long.
Emma, when I went to Dr. Cognetti, he ordered a scan for me so I was able to get one done right away while I was there. Then Dr. Cognetti saw me after he got the scan results.
Dr. Cognetti turned me down for surgery, so then I went to Dr. Samji. I think when you go to Dr. Samji, it's best to bring a scan if you can. Dr. Cognetti has the hospital and all the offices right there around him so it's easy to walk a block or so and get the scan. Dr. Samji's office is not in a hospital - it's a private office not close to any hospital. I know some people have sent him the scan and he's looked at it before they made an appointment. I think he's getting lots of out of-town people now so they may be refining their procedures. It's probably best to call them first and see how they want you to do it - if they want you to send the scan and talk to him first, or send the scan and make an appointment - or whatever. If possible, talk to Kimberly who is his assistant.
I live in Hawaii and I couldn't get an out-of-town doctor to order a scan here. They had to have one ordered by someone who is practicing here. I don't know if that's the same in Florida. You could ask Dr. Samji or Dr. Cognetti's office what kind of scan to get and then have your doctor order it.
I think both doctor's offices will work with out-of-town patients. I had more luck working with Dr. Samji's people than I did with Dr. Cognetti's people in terms of calling me back soon.
Good luck!! Keep us posted.
Thanks, I will call With this latest pain, I am getting assertive about handling all things in the neck and jaw asap. My osteoporosis is severe and calcium, minerals and exercise have not helped. I really need to address the Eagles, and TMJ, so I can take something for the osteoporosis. No one will touch me after I am on a bone density drug, especially the TMJ. Not sure about the Eagles.
I have been able to get bloodwork done out of state, but not sure about scans, etc. Thanks, I will get on it today.
Sorry you are going through this after already having surgery. :(
Definitely ask for the nursing staff when calling!! (As Heidement stated Kimberly is Dr. Samji's). They will be able to give you the most information and save time. No offense to the receptionists ( I was one for many years :) ) but they may not have all the info you need.
Wishing you the best!!
I am still new to this but I had no luck getting to dr Cognetti I could not make the trip without some assurance on his end and I tried to get the people in the office to have him review my ct before I made the trip and had no luck. I just had my surgery last week with a Dr. Anderson at Lahey Clinic in Ma he confirmed my Eagles right away but I had trouble convincing him that was the cause he agreed to do the surgery after going to other specialists and being cleared by them. Then I had a 2nd opinion At Mass Eye and Ear with a Dr. Song he also agreed I had eagles but felt the cause of my problems was TMJ and wanted me to go to another specialist so knowing Dr. Anderson was an excellent surgeon I went for it. Right now the surgery pain is bad but the Eagles symptoms on the left are gone! I do know that both of these Dr’s have performed the surgery before successfully and they are both at top hospitals and are excellent surgeons. You could try either of them and if you came to Ma I could help you out.
So sorry you are going through this. As Sheila said call the office at Dr Samji’s and talk to Kimberly. I did and he ordered a CT scan the day before I went to his office. That was in January. I sent my panoramic X-ray by email in 2011 to Stanford and Dr Samji called me that night. The office staff set up a Ct scan one day prior to seeing him back in 2011. When I was there in January this last time, the radiology tech said that Dr Samji has his own protocol for Eagles for positioning for the Ct scan. Either way, send all your records about 2weeks before going to make sure the Dr gets them. You can request the Dr order a scan if needed before you see him.
Keep us posted.