Hi all, I’m preparing all my files for my visit with my new doctor on Tuesday. I have all my scans, on a flash drive along with all my research to support Eagles. I had a CT soft tissue neck enhanced, but there was no specific reference to my styloid processes, it was a CBCT that showed elongated processes and the radiologist referenced Eagles syndrome in his report; my ENT, Neuro and everyone else dismissed Eagles. Should I be requesting another CT specifically measuring my processes or do I ask for a second opinion on the scan? Thanks!
@Weezie65 Great idea getting everything together in one place. My advice about the CT is to see if you can simply get the radiologist to measure the styloids from the existing images. I had the same issue, called my imaging center, and asked them to measure their length. It took them a few days since they didn’t have a radiologist on site, but this was still better than paying for another scan. Also, I had had more radiation than I wanted to be exposed to in the short time frame before then. So, I was happy to skip another scan, which would have been expensive for me also.
Great advice, redbird773. Thank you for sharing your experience.
@redbird773, thank you for the advice, that’s exactly what I will do. Another question, I am in Canada and am almost 100% sure I will not be able to get surgery here (researched), does anyone have experience/advice on out of country patient dealing with Dr. Samji? I am desperate to get this resolved, I am now housebound with all the symptoms, can barely function day to day with the pain and dizziness. Any advice/help is so greatly appreciated!
@Weezie65, I am not sure if others from Canada have traveled to have surgery with Dr. Samji but he does provide phone consultations if he receives adequate information confirming elongated styloids. I recommend reaching out directly to his assistant, Lauren (lauren @ caminoent . com)…without the spaces. She should be able to tell you exactly what is needed to get started. They are busy, so if she doesn’t respond you might try reaching her again. It took me a couple times to reach her the first time. Dr. Samji was “in network” for my health insurance, so the finance part was easy for me. I’m not sure how that would work for someone outside the US, but I have read that some members have arranged cash payment. This should be something that Lauren and/or the other office staff there should be able to help you with though. Best of luck!
I looked into Dr. Samji’s cash fees a few years ago (2015?) for someone from Malaysia who was thinking of traveling to see him. His cash price then was about half of what he charged a person w/ medical insurance. This is because in the US medical insurance often only covers a small portion of a doctor’s charges so all medical bills sent to insurance companies are inflated to make sure the doctor gets as much payment as possible from insurance. Patients normally also have to make a payment to the surgeon, but usually it’s a relatively smaller amount than the insurance pays.
Additionally there is a charge for the surgery center Dr. Samji uses & for the anesthesiologist.
As redbird773 noted, emailing Lauren, Dr. Samji’s medical assistant, is the best place to start.
@Isaiah_40_31 thank you for the information, I appreciate it. I emailed Lauren at Dr. Samji’s office she got back to me very quickly with what Dr. Samji requires. Sadly I have had not a great day as far as getting the medical profession here to help me; as I mentioned previously I was taking all this info to a new GP in the hopes he would help, here is what I have learned (as far as Alberta Health Care goes anyway):
the CBCT scan that shows elongated styloid processes and the radiologist report that goes along with it referencing Eagles Syndrome is not recognized by the Dr’s in this province because it was ordered by a dentist and does not show up on your health record, thus why my neuro & ENT dismissed it.
I requested my new GP request an addendum or second opinion on my previous CT & MRI scan to report on the styloid processes and measure them - even though the diagnostic imaging center advised that this could be done with a request from my Dr. he refused.
My new GP did give me a bit of a rough time but I refused to leave until he had referred me to a new ENT and a maxillofacial surgeon, he agreed and did so.
I do have some hope - he did agree that he would reference Eagles Syndrome and he vowed to get to the bottom of it as-as he put it “no one should have to suffer for 4 years with no explanation or root cause found.”
So, here I go again…
On a side note, I sent all my scans and reports to Dr. Samji on the hope he may take a look even though I have been unable to provide measurements - I will keep you all posted on how that goes - fingers crossed.
Thanks again to everyone for all your information, support and encouragement, I will not give up. Take care.
GOOD WORK!! Good job standing your ground!!! Getting the new referrals is a huge step in the right direction!
Someone (Christy, maybe?) who had an upcoming appt w/ Dr. Samji recently posted that they were having trouble getting their styloids measured. He told her that he could measure the styloids from the CT scan so having a radiologist’s measurements is not the end all for him. I’m sure he or Lauren will get back to you regarding your situation since you’ve provided the info he requested.
Thank you so much, means the world to me. Fingers crossed
Hope that Dr Samji does help you without you having to go through another ENT. So frustrating for you, well done for standing up for yourself!
Thank you. Fingers crossed. On a side note, I already have a consultation and imaging booked with the maxillofacial surgeon for April 16, hoping I can get the imaging and measurements I need.
Hi Weezie -
Be very clear w/ the maxillofacial surgeon about what your want your imaging to show (skull base to hyoid bone at the very least & not a profile image but from the front & at an angle on each side - think Mona Lisa head position ). Ask that 3D images be included.
Be clear that you know what you’re talking about & don’t let him/her talk you down or make you feel stupid or like you’ve diagnosed yourself based on something you read on Google. There are links to a number of research articles about ES in the Newbies’ Guide section of this forum. See if you can find any that describe your symptoms as being related to ES. Another option is researching ES via scholar.google.com. Some articles are available in pdf format w/o a charge, others you need to pay for or have access to a college or university library system in order to get them. The more armed w/ relevant info you are, the more believable your case should become to the new doctor.
I’m hoping & praying your appointment goes well & you feel supported.
@Isaiah_40_31Thank you for your insight. Yes, I have all my research done and it all backs up my symptoms. I appreciate the tips on the imaging, very helpful. I was going to ask for a full pano with 3D imaging and to ensure the styloid processes were included along with measurements. I believe you are right, the more armed I am with relevant info, the better my chances are that I can get them to listen, I have a file full of research and all my scans etc. on a flash drive, I am not going to give up. Thanks again for your support.
Good job doing your homework! Some doctors will be dismissive of your symptoms &/or diagnosis even when you’ve done your homework. I hope the new doctor you’re seeing will listen to your story, be interested in the research you have for him & offer you the help you need.
Weezie65, Keep pushing forward! It took me 17 years to get diagnosed with ES. I gave up so many times. I moved from Houston, TX. to Oklahoma City, OK. Then, it took 3 years in OKC to finally get diagnosed. I was in the Mercy Hospital System and all of my physicians were in that system but, even they could not diagnose me.
Then, I decided to go to a University Hospital System because they do research and the money is there, in research. Well, to go to the University of Oklahoma system, you had to get a “referral” from your Primary Care Physician. Well, guess what??? Mercy would not give me a referral outside of their system! I was at the end of my rope with pain.
The doctor at Mercy who saw how I was suffering was my Gynecologist. He wrote the referral. A gynecologist! It was a long shot because the Otorhinolaryngology Clinic at OU Physicians might not take my referral from Dr. Carpenter OB/GYN. It worked, they took the referral. That…was answered prayer for me.
It took Dr. Krempl (He’s on the list of doctors for ES) Three month’s later, I got diagnosed with ES. A week later, Dr. R. Layton Runkle did my surgery. Both sides done at the same time through my mouth. My life changed drastically for the better.
I saw Dr. Krempl this past January and we spent an hour talking about how I am now okay. I asked him to please continue to diagnose people with ES and I told him that I put him on the list of physicians who know about ES. He said that was fine with him.
I hope that you can get to the place that will resolve your situation. Don’t give up! Stay close to all of us who have walked in your shoes. We all have gone through the same nightmare.
@hadassa, thank you for sharing your story, so very frustrating for you that it took 17 years for a diagnosis! It has been almost 4 years for me (May), I had lost hope, but I have hope again. My appointment with the Maxillofacial Surgeon is tomorrow, I’m praying he will be willing to listen to me; this is a devastating disease, no one should have to live with.
Weezie65, I hope to encourage you and all the rest who are going through this nightmare that is a mystery for allot of ENT’s and other physicians who haven’t a clue about ES. Dysphasia of throat is all I ever got as a diagnosis. I was sent to dentists, regular doctors, head and neck surgeons and anyone they could refer me to.
I know that many of us have made our rounds but, have no diagnosis. Don’t take no crap from these doctors who look at you like you’re crazy! I even had a doctor wanting me to see a counselor! Because he thought I was struggling…Yeah…It felt like a fish bone stuck under my tongue!!! That would make anyone crazy. So, just know allot of us have gone through the same hell you are going through. I will keep on praying for you guys.