Hi Everyone,

I want to introduce myself I am a 47 year old mother of 4 and happily married by all outside measures I have a dream life! The problem is I have been suffering mostly in silence for many years. When I was about 5 I suddenly developed allergies and severe asthma so I have always associated my symptoms with my sinuses especially since most of them seem to originate in my head. When I was 13 I started to have synchopy episodes once or twice a year and have had them for years a cause has never been diagnosed. In my late teens to early twenties I started to get headaches and fatigue the headaches I associated with my sinus issues I went to an internal medicine doctor who diagnosed me with CFS. Then I went to the ENT for my sinuses and he said I had a deviated septum for which he did surgery it didn’t really help. In my mid twenties I developed GERD and this caused a tear in my esophagus on a major artery I almost bled to death. But mostly with all my doctor visits I have been made to feel like a hypochondriac especially since about 32 when I developed tinnitus and a strange noise and heartbeat in noise in my ear this would happen mostly when I sang to my infant son. I finally went back to the ENT who did a hearing test and told me I was fine. I have told myself that I have periods when the Chronic Fatigue Syndrome flared and times when it was not so bad. The ears have progressed to full congestion which I again associated with sinuses. I began to get shooting headaches and went to the doctor who thought I had a sinus infection and sent me for a CT as well nothing was reported. I have had boughts with depression. Massage therapists have told me I am in chronic fight or flight because I cannot relax my muscles. I am an insomniac but chronically tired I self medicated with sleeping medicine combination of herbal and OTC slowly increasing doses as needed so I didn’t kill myself but this was my only relief. I also take Motrin constantly and Prilosec to keep it from affecting my stomach. Late last summer I developed a new symptom a feeling as if I was trying to cut a tooth through my tonsil. Since I thought it might be an embedded wisdom tooth they never found I went to the dentist in October for my checkup and asked her about it. She said it felt like bone and she had never felt nothing like it she recommended I see ENT or oral surgeon so I went to my GP who put me on an antibiotic and prednisone. She Los sent me to a new ENT who felt it and was surprised and said she thought I have a syndrome called Eagles she sent me for a CT nd a follow up with her she does not o the surgery so we set up another appointment with her associate. When I went back home a looked up Eagles it all fit I was not crazy! Thn I went back to her and she said I have some minor sinus abnormalities but no Eagles I began to cry. She lo wanted me to see her associate I waited 2 weeks to see him beating myself up and thinking I am just a major hypochondriac. When I went o see him he said I have the form of Eagles where the styloid is elongated there is no calcification so because of my diverse symptoms I have to be valuated by Neorolgy a a rheumatologist but if that comes back clear he will do the surgery. I also took Emma’s advice and called Dr. Cognetti I want a back up. I saw the Neurologist and he cleared me now I have to wait over a month to see the rheumatologist. The main problem in the meantime was that the prednisone brought me back to life I hadn’t felt like that for years and didn’t even know it was possible. The ENT’s both refused to keep me on them because of side effects I went back to my GP who blessedly put me on another 2 week taper that is he only reason I can write this. I just want them to book the surgery and get it over with the acute pain I can deal with but not the symptoms which I think I mistakenly refer to as pain because to me this is the worst part of the whole thing. Thanks for letting me tell my story I left out quite a few doctors visits and tests because this is already too long.

I am so sorry to hear you have suffered with this for so long! I would try to keep the appointment with Dr. Cognetti. He has a lot of experience with this surgery and if you read other discussions on this forum, you will see that he is highly regarded. In the meantime, I am happy to hear you have gotten some relief!

Thank you! Unfortunately it only a couple weeks worth.

Hi Lifelongeagle. I am glad you found us. I am glad you called Dr. Cognetti. You can read the very recent discussion "Had surgery with Dr. Cognetti Nov 22" The member that just had surgery started it and has added a reply or two explaining how wonderful Dr. Cognetti is. I am hoping you will get the correct help soon. I do not believe the styloid needs to be calcified to cause this pain, though I bet it is, the elongation allows it to get tangled up in your nerves and that is what causes the pain. Even the best doctors often find that the styloid is bigger, wider or longer than read on the CT scan. Please, if you can, go to the best even if you must wait a week or two longer because lots of doctors do not have the skill to avoid injuring nerves. Even Dr. Cognetti cannot guarantee that, but from what most of us are seeing, he seems to have skill and most importantly empathy and desire to understand our condition.

My story is similar to yours, I had ear and sinus pain for years, had surgery for deviated septum, have also had/ still have GERD, though not as bad. I never thought that I had anything wrong out of the ordinary until I felt a big old bone in my throat and then figured it was because of my misaligned jaw. I only spoke up when I found out that I had Thyroid cancer so I asked about the lump in my tonsil bed. By that time I was in a lot of pain and was seeing a TMJ specialist. I still need the assistance from the TMJ specialist because some facial pain does come from that so I just thought I was getting throat infections and stuffy ears.

Only time will tell if my sinus issues are lessened by the surgery, but my ear pain and fullness in the ear, burning throat, something stuck in my throat and general feeling of wellness are much improved. My GERD is still there but I don't seem to need as much medication. I am so hoping to get fewer sore throats and colds for which I need medication. However, I do have allergies and have already needed steroids to reduce the inflammation.

I did not know about Dr. Cognetti, until 2 days before my surgery so I didn't want to wait any longer, but if you have the opportunity to go to the best, I would recommend you do because I think his patients come out feeling better sooner for the most part. However, since you have been suffering for a long time, you may be like me and take up to 3-6 months for the complete healing and then you may still have the GERD and sinus issues not really associated to Eagles.

I'm so sorry you are suffering :( There is hope and you are not alone!!

I agree with with what the others have said please keep your appt with Dr. Cognetti. I know how hard it is to hold out but you need to go with the best surgeons out there....... especially for ES and the fact that you are dealing with other health problems.

I too have been battling with adrenal exhaustion (was at Stage 3), Celiac disease, Thyroid disorder in addition to ES. I can't tell you how grateful I am to have been given the info that other members have shared. :)

I had GERD too but it was resolved day 3 after coming off of gluten.

My surgeon (Dr. Samji) told me that some symptoms can be secondary to ES. Anytime someone has a chronic health problem or is in chronic pain it can weaken the adrenals, thyroid....etc.

I will be at the 6 week post op mark this coming monday and have more energy than before surgery. If it is pressing on the carotid and or the vagus nerve (fight or flight) like it was with me it can definitely wear your down.

Hang in there you have part of the battle done ......validation..... You are not crazy :)

Take care,

Sheila

Thank goodness you found this site!! I live in Texas and no one wanted say it was or was not. It’s frustrating these Drs want to put a bandaid and not even give you the option of surgery. I can feel your frustration and how life has been on hold for you. The Drs list on here is really good. I chose Dr Samji and have no regrets and feel relief after 1.5 week post-op. This is a great site of advice, rants, and great support!

You are all so wonderful here! I feel so blessed to have discovered this site and to be able to share and read others stories. Discovering that I am not alone is amazing! The frightening thing is I wonder how many of those 4% of the population who have this are actually symptomatic and have never found the help they need because no one was able to diagnose them. Right now I wish there was some way to reach out to the world and tell people they are not crazy have this checked! I think so many of us have suffered in silence needlessly because we don’t want others to perceive us as hypochondriacs. I sent my story to The Doctors tv show maybe if others do the same they will have it on their show and we could reach some of the others who are affected and frustrated. Somehow we must get the word out about this syndrome! I saw a post about letting doctors know about it especially those who have told us there is nothing wrong and that is a wonderful idea! I will do this for sure when I am better!