Disolving the calcification with steroid (cortisone) injections

I was diagnosed with Eagles in December and have suffered with all the symptoms

for over 20 years, seen countless doctors and was always misdiagnosed. Finally my

dental surgeon suspected Eagles and ordered the 3D CT scan but could not find

anyone to treat me so I called the Mayo Clinic in Phoenix. My appointment was last

week with Dr Karel A. Deleeuw. He told me that because operating is dangerous and sometimes not effective at reducing the pain that the method they use is steroid

injections into the styloid. This should be done about once a month for three

months along with iontophoresis, or modility per a physical therapist and tens. This method is suppose to break up and disolve the calcification and be absorbed by the body the same way taking a calcium supplement would. He injected the steroid on one side of my throat which has relieved some tension on that side of my neck. When I swallow now I do not feel the lump that was in my throat on that side, but still feel the lump in the middle and other side of my throat. It has not helped with the tension headaches, tinnitus, or fullness in my head. I'm just wondering if anyone else has heard of this or had it done. Am from BC in Canada, Dr Deleeuw told me of a Dr Harinder Lotay in Maple Ridge BC and Dr Akram Rahal in Montreal that treat Eagles. Would appreciate any feedback if anyone has used these doctors or had these treatments, this has taken up so much of my life, I would like to get the right treatment. I was hoping for a miracle cure, but am still waiting for any sign of change. I had tried to get my medical services plan to cover this but they came up with the name of a doctor Eitan Prisman in Vancouver who treats, has anyone been to him? Thanks your website is great

I have been reading this forum for awhile now and have not read about this course of treatment. Emma has a wonderful spreadsheet of Drs that have successfully treated many of us. If I recall, Dr. Samji would be closest to you as he’s in CA.

I've never heard of that. I've always read that the only way to cure Eagles is to operate. There have been a lot of people here who've been cured by surgery. But of course, if at all possible, go to an ENT who has experience with Eagles surgery.

Heard of steroid injections to alleviate pain and not very successfully, but never to dissolve calcifications. Calcium is a pretty impossilbe substance to dissolve or our bones would fall apart easily. I know that massive doses of steroids are believed to cause osteoporosis, but to dissolve it, no. Never heard of the rest and I would never ever let a Physical therapist near my calcified styloid because breaking it or forcing it to impinge a close by nerve is more than just painful, I would think it could cause permanent nerve damage. A lot of people who have an injury that initiates the Eagles pain suffer from permanent nerve damage. Breaking the calcification is a serious problem according to my ENT. I told him to push on it. He said no way, you could break it. Don't put any pressure on it.

Those who can't shouldn't. Just saying you probably should find an experienced ENT who removes the styloid either from the skull externally or intraorally and partial. I have not heard of anyone in British Columbia. I did just recently add a doctor from somewhere in Canada to my spreadsheet. I don't think that patient has fully recovered to be able to give us a positive recommendation. The latest posted update is in Doctors discussions" Updated Spreadsheet January 14, 2014" Not sure about the day, but January 2014. I do not think the Canadian doctor is listed. Some from BC come to USA for treatment. Dr Samji is in San Jose, Ca. He is one of the most well known and experienced. Wish we could help more. Hope others from your area join this discussion.

Hi Ady,

In all of the research I have done on Eagle Syndrome, I have never heard of this method. Has this doctor treated other ES patients using this method? If so, how many? And, what is his success rate? I know of another member on this site from B.C. Who had the external surgery done with Dr. Sanjay Morzaria in Surrey, B.C. I haven’t heard from her in awhile, but I believe her surgery was successful.

I am from Toronto and looking for a surgeon that could perform the external approach. I noticed that you mentioned Dr. Akram Rahal in Montreal. Do you know what type of surgery he does? Is it external through the neck or intra oral through the mouth?

Hope

Hi Ady,

I live in Vancouver and have been aware of something similar (see last paragraph below), but was told by my ENT (Dr. Morzaria in Surrey) that it was not available yet, though I suspect he was not even aware of this kind of treatment. I'm not sure where you live in the province, but I can tell you that even the "experts" here in Vancouver are pretty closed minded and myopic, starting with the radiology technicians to the Radiologists and upwards. BTW, there is another ENT in Victoria (Dr. Frank Wong) who has been seeing some ES patients.

The first thing to determine, in my opinion, is whether you are dealing with "calcification" or "ossification". One radiology tech admitted to me that calcification rarely shows up well on a CT scan and is better captured on an X-ray, and even then, is subject to the correct angle. Secondly, the Radiologist may not be familiar with a particular condition, in which case will either not report it at all, or simply say "unremarkable" and "normal". Since most doctors don't look at the films/scans and simply read the report, they won't proceed further. The flip side to our health care system is that they need hard evidence to justify the costs of exploratory tests & exams.

I think the treatment you are referring to and the one I have read about might work best on calcification (usually affecting soft tissues) rather than ossification (actual bone growth). One thing I believe though, is that if you have calcification in one area, you can get it in additional areas besides the Temporal neck. I think it can also be traced back to a chemical imbalance that can possibly be reversed by restoring the balance of minerals, nutrients, etc.

If you go to my profile page and scroll down to the Documents section (can't seem to attach files in this reply), I have some articles & links listed under "calcification" that might be of interest to you. The one about the treatment is called "Osteopontin". In the photos section, there is some info about my other condition caused by calcification.

Good luck,

Red Pill

Ady, Red Pill, and Hope,

The three of you have mentioned doctors in your area that I have not seen mentioned here before. If you can locate patients on this site or on your own who have been treated successfully, please report or ask the patients to join or website and report. This is a start at finding doctors in your area. It certainly would be nice to be sure about any of them and be able to add them to our list. Sorry, I won't hijack this discussion any further.

Also, would like to learn more about this procedure. Keep us posted.

Hi Emma,

Dr. Morzaria has been mentioned a few times. R.B. has had surgery by him, which I believe was successful. He only saw me twice, told me my ES was asymptomatic and that the styloids were not impinging on any vascular structures, therefore there was no need for him to proceed further, but he recommended I see a neurosugeon for my other clacification issue, which didn't fall under his area of practice. Therefore I can neither give him a thumbs up or down.

As for Dr. Wong, I have mentioned him a couple of times in posts with R.B. or one of the other Canadian members, but I have never had contact with him other than to speak with his office to confirm that he has some familiarity with ES.

Hope this clarifies things a bit. If you would like both doctor's contact info, just let me know.

Red Pill

emma said:

Ady, Red Pill, and Hope,

The three of you have mentioned doctors in your area that I have not seen mentioned here before. If you can locate patients on this site or on your own who have been treated successfully, please report or ask the patients to join or website and report. This is a start at finding doctors in your area. It certainly would be nice to be sure about any of them and be able to add them to our list. Sorry, I won't hijack this discussion any further.

Also, would like to learn more about this procedure. Keep us posted.

Hi, thanks for the replies, seems like there is not much help out there as far as doctors go in Canada. I finally called Dr Prisman's office because I never heard from them, said they were waiting to see my 3D CT scan, but sounds like he does not know anything about ES. I then called Dr Lotay's office and found out he doesn't treat ES either. Dr Deleeuw at Mayo Clinic said he could still move my styloid so it must be calcification. They can be seen on the 3D CT scan and also I got an old xray from my chiropractor and an old icat image from a so called neuromuscular dentist and I can see the calcification on both images. I do have osteoporosis and had been on a calcitonin nasel spary called Miacalcin for years in July of 2013 the FDA withdrew the product. I wished that I could have asked Dr Deleeuw more questions about how effective this was, he did seem very convincing that it would work and did mention he had also done surgeries but were dangerous. I was concerned at the time of the injection what would happen if it broke off and punctured my artery but he assured me that it wouldn't. Dr Deleeuw also gave me a prescription for physical therapy topically 3 x /week/4 weeks for each of tensing, ultrasound, Iontophoreses, or modality per therapist. I have called all over Kelowna and non of the physical therapy places have heard of this. I have a Dr Ho tensing unit which I have been using. I just wonder about our health care, seems like such an exhausting effort to get proper care.