Recently Diagnosed - Help & Advice Please

Thanks for reading!

I've been having a dull pain in my left tonsil area for about 5 years, this pain would be worse when I was rundown or sick. The left tonsil was enlarged and cryptic. I moved to a drier climate, and got strep multiple times within the 1st year, and the ENT decided we could remove my tonsils. My tonsils were removed in Sept of 2011. I was pregnant by 2012 and had my baby by 2013, and throughout this time my throat felt fine. Then by about June 2013, the nagging throat pain came back. I could pinpoint from the outside where the pain was coming from (tonsil area). This pain can be described as (all on my left side only) sore throat, ear pain, back of neck pain (like I want to pop my bone at the base of my skull), sensation as if something is in my throat. These are similar to the tonsil pain I felt prior to having my tonsils out, but now the pain is more well defined.

I went to see the ENT who removed the tonsil and he suggested PT, I had PT done for about 6 months (and found relief), but still had the nagging pain. The ENT did a manual examination (orally) and said that he could feel the elongated styloid on my left. He also brought in his PA who could also feel the elongated styloid as well. He recommended surgery and was going to do it without CT confirmation. I asked a family member who's in the medical field and they indicated that I should absolutely get the CT to confirm. I have a couple of questions:

1) Do I need a CT to confirm (am concerned about radiation), and if so, is there a machine that can image the neck with lower radiation (family member suggested dental CT). Would dental CT be sufficient?

2) The ENT was willing to remove this. He's seen 2 in his career. Should I see Samji? I called the office and would need to be in CA for a week following.

3) Is surgery necessary? I wouldn't classify my pain as awful, just annoying.

4) Has anyone else had their ES confirmed by manual examination?

Strongbird, I'm glad to hear that it seems your doctor is on the right track with diagnosis. I was diagnosed within weeks of my symptoms starting about 18 months ago. I had surgery a year ago...successful and asymptomatic. I personally found acupuncture to be enormously effective at controlling the pain. My acupuncturist gave me a discount for weekly appts.

Regarding your doctors response...I would absolutely not proceed with surgery with only a manual examination. And frankly any doctor that would suggest such a thing would never be doing my surgery. My styloid bone was at the low end of what is considered elongated (3cm), but my ligament (between the styloid and hyoid bones) was ossified, and therefore was acting as an elongated bone would. My surgeon, Frank Ondrey, Director or research and clinical studies for ENT at at University of Minnesota Fairview, was awesome. Dr. Ondrey is actually a head and neck cancer surgeon. He spent over 2 hours with me just in the first appointment to assure both of us of my diagnosis and he wouldn't even accept the MRI scans sent my my local ENT because the aspect wasn't right. He's done many, many of these cases. Relative to some of the other cases I hear on this site, I think mine was fairly mild, but my surgery was 3 solid hours of the surgeon dissecting out bone and ligament from right next to my carotid -- he called it 'high end real estate'. I have basically been asymptomatic since surgery, no infection, no side effects. I didn't even have any pain after surgery except from the breathing tube. It was out-patient, but I had to stay in town for 24 hrs. I have noticed from many other folks on this site that these surgeries have not gone consistently well. It sounds like lots of people have had this procedure done by inexperienced people. This is a RARE condition, and not one for the inexperienced. My local ENT was relieved I looked for someone with experience.

I can't comment on the radiation question, but there's no doubt that LOTS can go wrong with surgery in your neck. There are no less than 5 major nerves among other necessities. I still have a small patch under my chin that is numb because the nerve hasn't grown back yet. I can understand why you may believe that surgery is not necessary, but keep in mind that your bone will never get shorter, and is likely to get longer. The longer it gets the more involved the surgery will get. Lots of people on this site have symptoms far worse than I ever had (e.g. liquid diets, can't speak..), and I would guess part of the reason is that they may have been undiagnosed for so long or are unable to have surgery. At the very least, I would encourage you to get a second opinion from someone with much more experience.

1 Like


I agree wholeheartedly with edgirl (as all of us on this site would) regarding not allowing this guy to proceed with surgery. ANY surgery should not take place without a proper understanding of the situation and REALLY GOOD IMAGES.

As for the type of scan, here is what I have learned in the last couple of weeks. 1. A dental CT scanner (CBCT) is not as powerful (also gives off lower radiation) as a medical CT scanner. This can be a good thing as it can show any calcification as well as ossification. The bad thing is that, depending on the manufacturer's model, it may not be adjustable enough to scan the area you want, and since it is used almost exclusively in the dental field, they may not feel comfortable using it for non-dental reasons. 2. A standard medical CT scanner is much more powerful (calcification often does not show up using standard strength), but can easily be adjusted to the power levels of a CBCT and can scan most parts of the body. The issue you may encounter, is convincing the Doctor, the Radiologist and the Radiology technician, to perform the scan at the lower power levels, since they will not want to expose you to additional radiation in order to get the proper in-depth detail needed for surgery. Plus, sometimes I get the impression that they believe there is only one way of doing things and if they broke with tradition, the sky would fall in.

The way I see it however, it is better to get a smaller amount of radiation first, along with a good idea of the overall picture. What if calcification is a big factor in your symptoms? At least everyone will have a better idea how to proceed to the next level. Besides, many of us were exposed to multiple CT scans as we moved from doctor to doctor anyway and sometimes those new doctors weren't too concerned about past scan exposure. It is a necessary evil sometimes. I suppose it also depends on how much time passes between scans

Ultimately the decision is yours.

Good luck,

Red Pill

Strongbird, I again agree with the others that you definitely need a CT scan to diagnose this condition. I have been plagued off and on for many years with symptoms which increase during stressful times. My longest most painful exacerbation lasted for 3 months. I got relief from chiropractic visits and neck massage as well as ibuprofen. This releases the muscular tension that exacerbates symptoms and the ibuprofen decreases the inflammation. Today as I sit typing this I am pain free. Mine was diagnosed by CT scan. If my symptoms were continuous I would have contemplated surgery. I would have researched this far and wide and would have only gone to someone who has experience with this. Yes, I would go to Samji if he is well known for this surgery, but I would not rush into it as with any surgery there is always risk. I would never go to someone who has only done 2 surgeries. I would find the most experienced surgeon near your home. Have you researched John Hopkins or Mass General? I am a registered nurse and have been one for 30 years now and would try alternative treatments to rid myself of symptoms first before I tried surgery. Best of luck to you and I hope you are able to make a decision that gives you the quality of life that you deserve. Lauren

edgirl, Red Pill, and Spring Girl, thanks for your responses and advice. I have a CT scheduled this week. I have another question...As I mentioned I would like to avoid multiple CTs. Would you advise that I ask for a CT with contrast, or will just a regular CT of the neck suffice?

It is hard to make decisions, but so very helpful to hear the words of people who have been/and are going through this.

Physical Therapy definitely alleviated symptoms, and like Spring Girl, I feel my symptoms are exacerbated by stress. My symptoms also increase during allergy season as well as cold/flu season. It's a great feeling to know other people are experiencing this and it's not all "in my head".

Have any of you experienced heart palpitations as well? Or would this be a sign of anxiety (from worry about the neck)?

Thanks again for reading and your support!


I think I said 'MRI' in my original message, but my imaging was actually CT...and Dr. Ondrey ordered with contrast. He was very particular about the image aspect though. I forgot what his exact orders were, but they were not a standard request. Dr. Ondrey was also very clear with me about the fact that surgery is only a 50/50 success story for Eagle's, but so far I count myself lucky.

I too had problems with the most minor cold before my surgery. As I mentioned, acupuncture really helped with the pain and inflammation. After a few visits I was 'on maintenance' and largely living pain free. That said, it never really went away. Some days were just more tolerable than others.

I am a PhD student..the heart thing is almost certainly anxiety. I've had that a few times when I'm facing too many exams! Twitchy eyelids too :). I have LOTS of experience with many types of stress related physical issues.

Take care, and find a great second opinion!

UPDATE: I had a CT, and it sounds like my styloid is only 3 cm long, and my ENT classified it as a "normal" length although he indicated that palpate on the side that is giving me issues but not on the other. He indicated that I don't have to get surgery, (I don't want to), and that there were no findings on my CT. He also clarified that the reason why he wasn't pushing for CT was because I was pushing so hard against it, and since it was close to the surface and he could feel it, there would be no need for CT. This makes sense to me.

He also indicated that the surgery he would perform would be short because he would only be making a small incision, and cutting the tip of the styloid off (not the whole thing). Sounds like my styloid is not as long as some others, thus why my pain is more manageable and only flairs up during certain times.

I've opted to just manage the symptoms, and after hearing his explanations it all seems to make sense to me now. Thanks for everyone's feedback.