New diagnosis, lots of questions

Hi everyone. I have been suffering from symptoms for over four years. ENTs, neurologists, allergists, endocrinologists and chiropractors have not figured out what my symptoms mean. Insane pressure in base of neck and head it causes vertigo feelings and nausea. Lately the episodes have been more intense and when the pressure is really bad I have shortness of breath. After a ct scan of sinuses they found each side of the styloid to be 5cm and stated Eagles syndrome. I called to get an appointment with Dr Cognetti and they told me to send my discs and report and they will call to schedule an appt.
I’m in constant pain and just want to figure it out. Anyone have this situation with dr and waiting to hear of they will schedule you? I’m new to the diagnosis but excited to think there is a true medical reason for my symptoms and hope there will be a solution:)

Have you been checked for Chiari malformation, Court? dysautomonia? POTS?

Congrats on the diagnosis...one step closer to dealing with it all effectively. People have spoken very highly of Dr. Cognetti on this site. Wish you the best and welcome to the site!

I scheduled online with Dr. Cognetti and they called me the next day - I think I filled in for a cancelled appointment - try it!

http://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m/

Court29, I assume that the Dr. just wants to look over your ct scan before scheduling you because they want to verify that you do indeed have elongated styloids. Eagles syndrome itself does not always follow elongated styloids, as many people never have symptoms until there is some sort of trigger.

Were you involved in a car accident prior to your symptoms coming about?

Did you have an intubation from surgery before they came?

I truly hope that you are nearing a solution to your pain.

God Bless

I had severe pain (face, jaw, neck, chest, axillary, arm/shoulder/blade, POTS, migraines-light, sound, smell. Also, had sensitivity to touch, even a ceiling fan going any faster than lowest speed would be too uncomfortable. I had difficulty getting food down past my voice box. Also, my gums, teeth and tongue felt bruised. I suffered for 6 years and had multiple testing but no definitive diagnosis. I had both styloids removed 11/2013 and 3/2014. I am able to finally enjoy my life again. Do you have Ehlers Danlos Syndrome or hypermobile joints? Some of us have Ehlers, just curious. Dr Cognetti is on our dr list and he seems to be one of the best surgeons on here. My surgeon was Dr Samji and thank The Lord for finally getting some help and quality of life back.

Amy, are you part of our Ehlers Danlos community? Feel free to join, if you haven't already -- the link to it is in the righthand column.

Thank you everyone for replying! All of hear other terms and conditions are new to me… I will be looking all of them up today!!

As I read other’s symptoms I realize that I have more symptoms than I originally thought. I just brushed them off as something random since my main symptom is the debilitating one. I have a one yr old and three yr old to take care and on bad days it’s rough!! Anyone’s symptoms come and go? Mine have progressively gotten more sever this year but I do have days when the pain and pressure is much less and I almost feel normal. Just wondering…

Callo1- I have not had trauma. But symptoms started after my spinal with my forst c section. After my second son’s birth the symptoms haven’t really left and are way worse. Maybe a correlation? And I had tonsillectomy in 1998, and that’s when the voice stuff started but I brushed that off bc it wasn’t debilitating. It all seems to be lining up. I’m just hope the Dr calls and schedules an appt to see me soon.

I called Cognetti's office and just requested a new patient appointment. They gave me a date. I did not send them films or a disc or anything. He is scheduling now for July. You can just call and make an appointment like I did. I am not sure why they are making you wait to get one.

As for symptoms, my son is also in pain 24/7 but he does have spikes in pain, especially after he eats. My son did have intubation numerous times in his little history for surgery and for Botox. I do think that is part of the cause of the elongation. You are fortunate that your styloids are 5cm so no one can argue with your diagnosis. No one diagnosed my son---just me doing years of research and learning from others. I wish our doctors were more informed. Part of my job here is to get my son to tomorrow...every day that is our goal here. Because one of these tomorrows, there will be a solution. I want to find a doctor who will take us seriously and remove his styloids 100%. Good luck and I would call them back and just schedule an appointment. You have nothing to loose.

I made an appointment with Cognetti and I am on the cancelation list in case someone cancels. Then perhaps I can get my son in sooner. I did it over the phone. 1-215-■■■■■■■■ ext. 3

JCW said:

I scheduled online with Dr. Cognetti and they called me the next day - I think I filled in for a cancelled appointment - try it!

http://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m/

Ear Mom- thank you SO much!! I called and they gave me an appt!! The lady had no idea why someone else told me to send me stuff first!!! So frustrating I could have gotten in earlier… Oh well.

I hope this dr helps your son too. We live in the next town from you, how funny! Good luck and thank you again:)

Court29 You are welcome...so nice that I could help someone else in this crazy process. We are holding off on MVD surgery until we see Cognetti for his opinion on Eagles. I would prefer to have the styloidectomy first since there it is a less invasive surgery and the whole bi-lateral thing makes more sense with Eagles. I have read that 58% of eagles suffers are bi-lateral. And we are lucky to be so close to his office. Good luck. Keep us posted.d

Court29 said:

Ear Mom- thank you SO much!! I called and they gave me an appt!! The lady had no idea why someone else told me to send me stuff first!!! So frustrating I could have gotten in earlier... Oh well.

I hope this dr helps your son too. We live in the next town from you, how funny! Good luck and thank you again:)