Sleepless in Maryland

Hello, there!

Today I got diagnosed with bilateral ES after a frustrating six month journey, hearing from specialist after specialist that they could not figure out what was wrong with me. I can try to explain in many ways the way I feel right now, but I think you will pretty much be able to understand by knowing that I have cervical fusions in ALL my neck. Yup! Two procedures, enough screws and titanium hardware to fill a Home Depot and a long, beautiful scar to match the sign. So today I learned that by the time they are done with me, I will pretty much look like a turkey. That is, of course, if I find a doctor who agrees to take my case. I have been rejected by everyone I called. Not a neuro, dentist or otorhino...none. Can anyone out there send me some light?? This is Maryland, for Pete's sake...it's close to DC... There must be someone, somewhere!! The pain is killing me...it is so bad that I don't care about the scars. I just want this to go away and my doctor just gave me a very low dose of Toradol.

Can somebody help me, please?? :(

I'm so glad I found you!

Hi Mayela!

I live on the Gold Coast, Qld Australia. We all agree, Eagle Syndrome aren't for sissy doctors :(

Pity that we all have to suffer like this before finding help. Please feel free to inbox me. Dr Sam Dowthwaite is doing the surgery, he is an Otolaryngologist.

My surgery is now scheduled for the 4th October - they brought it forward. I think my prayers were answered :)

Don't give up! Praying for you - hugs

How far are you from Philadelphia, one of the most experienced surgeons for ES is in Philadelphia at Thomas Jefferson Hospital. Dr, Cognetti, See the attached spreadsheet of doctors around the world that have done surgeries on our members since the beginning of this forum. You may find another but check out the discussions. You will find that there are very few that are any good and fewer that more than one member has used.

Attached file is in EXCEL, I l hope you can open it, if not check out Dr. Cognetti for sure. Good luck. Sorry for all your surgeries. A lot of us are having similar issues. You are on the right forum.

489-EaglesSyndromeDoctors.xls (34.5 KB)

I am from Maryland as well & I feel what your saying! I was only diagnosed by asking an ENT to put his fingers in my throat & find out what the hell was this lump sticking out in front of my tonsil. Which a 3D CAT scan showed elongated styloid. He never mentioned Eagles to me. Long story, but it took me another year to piece everything together myself & found this site.I went to John Hopkins to a doctor who treated me like shit, but finally after manipulating the bone in my mouth, said she would take it out but only the internal approach. My symptoms have subside to what I can tolerate for now, thank God! BUT if I ever decide to have it removed, I would go to Dr. Cognetti in Philadelphia PA. I figure it's only a 2hr drive from me & he's done a lot of surgeries on people on this site, so he has lots of experience w/Eagles, also I hear his bedside manor & staff are wonderful. If you do find someone more local in your process PLEASE keep me in mind, for I am so turned off from Doctors at this point I don't have the energy to deal with them. Good luck!

Hey!!!

OMG, thanks for responding!! I was sent to specialist after specialist... One of them, here in Bel Air (very well known for his specialty in neck and face surgery) told me point blank after two 15-mins appointments and two different scans that he did not know what was wrong with me...and "don't call me, I call you". My internist told me he was sending me to just one more ENT. He said "if she cannot find what this is, nobody can...we will go with what she says".. And he sent me to Dr. Carla Lawson in Upper Chesapeake Hospital, literally, walking distance from my home. It took her like 15 minutes to come with the ES diagnose. Just one more BONE scan, and there they were; long and hideous, killing me for the past 6 months. I owe her my peace of mind, literally. I thought I was dying, because my body reacted creating a massive lump in my neck and enlarged lymph nodes. I cough all the time and my voice is harsh. Everyone thought I had cancer.

Sadly, as lucky as I am to have found Dr. Lawson, she wont't opperate me ( that only makes me respect her more).. I am now waiting for a consultation with my neurological surgeon in GBMC, just because I trust him with everything I have. However, my guts tell me he won't do it, so tonight we were discussing this during supper. I heard there is this other doctor in VA, but they say he has performed only one surgery. On the other hand, there is something about PA that makes me feel closer to home.

I hope you keep feeling better. My sympoms give me only one or two days of semi-relief. They always come back. I am also concerned about the fact that these things could get too close to the cartoid arthery, so I am calling surgery if Dr. Cannetti accepts my case. I am the kind of person that says "let's get rid of this; I don't want to worry about it anymore."

I will call Dr Cannetti tomorrow and keep you posted about everything. Later on, I will tell you how the process goes, so you can make your own decision. And don't forget to call Dr Lawson if you get a chance at 410-■■■■■■■■. She works in 3 or 4 different locations and I'm sure one of them is close to where you live. She gave me yesterday three different medications to keep the pain at bay and it's getting less brutal.

Hang in there, dear, and keep in touch!



Bubbles said:

Hi Mayela!

I live on the Gold Coast, Qld Australia. We all agree, Eagle Syndrome aren't for sissy doctors :(

Pity that we all have to suffer like this before finding help. Please feel free to inbox me. Dr Sam Dowthwaite is doing the surgery, he is an Otolaryngologist.

My surgery is now scheduled for the 4th October - they brought it forward. I think my prayers were answered :)

Don't give up! Praying for you - hugs

Thanks for your wishes, bubbles!! It is really important to me to feel your support!

Hi, Mayela,

I know how you feel the pain. the doctor search and scars. I had a c5-c6 ACDF with implant in April and then my right styloid removed in July. I will be having the left one removed after the first of the year. I am blessed that I found an amazing doctor here in AZ. If I lived east of the Mississippi I would go to Dr. Cognetti in a heartbeat. God bless you on your medical journey.

Amen! I have some great doctors.....but the questions of "are you depressed? Are you a nervous type person? Do you think you might have some anxiety?????" No to all of the above, but you're bringing a lot of it out in me be not fixing my real PROBLEM. Truth be told, Eagle's probably is not as rare as everyone thinks, all these poor women walking around diagnoised with fibramyalga and depression probably just have elongated styloid bones!!!!

tbone said:

I am from Maryland as well & I feel what your saying! I was only diagnosed by asking an ENT to put his fingers in my throat & find out what the hell was this lump sticking out in front of my tonsil. Which a 3D CAT scan showed elongated styloid. He never mentioned Eagles to me. Long story, but it took me another year to piece everything together myself & found this site.I went to John Hopkins to a doctor who treated me like shit, but finally after manipulating the bone in my mouth, said she would take it out but only the internal approach. My symptoms have subside to what I can tolerate for now, thank God! BUT if I ever decide to have it removed, I would go to Dr. Cognetti in Philadelphia PA. I figure it's only a 2hr drive from me & he's done a lot of surgeries on people on this site, so he has lots of experience w/Eagles, also I hear his bedside manor & staff are wonderful. If you do find someone more local in your process PLEASE keep me in mind, for I am so turned off from Doctors at this point I don't have the energy to deal with them. Good luck!

Thanks Mayela for the name & # of your doctor that diagnosed you, I appreciate it. It's good to know someone in MD is at least aware of Eagles!! Good luck with your journey, if I can be of any help, Let me know! :)

I am also in Maryland and have extensive cervical fusions! Skull/C2 and C3-6.

Mayela-

I send you a friend request but forgot to add a message. I am just south of Baltimore and wonder if you would share who your surgeon at GBMC is? I go to GBMC to see my Geneticist- Dr. Clair Francomano.

May I also be so bold as to ask why you needed the cervical fusions? I shared my story in a new post and needed mine due to EDS.

I have also sent my report and now CT images to Dr. Cognetti.

Hello again, my friends!!

Yesterday was my appointment with Dr. Cognetti... I am over the moon!! I will be having my surgery on December 6th...YEY!!! He was very reassuring. compassionate, understanding... I even bursted out crying when I told him about my journey searching for an accurate diagnose; he smiled, handled me the tissue and told me not to appologize. He knows about our group and is eager to help anyone.He doesn't force surgery on you, which is a very good sign. His staff is amazing and kind as well; so much that my aprehensions for being in a different state and in a hospital totally unknown to me vanished immediately. But please be aware of something: if you are looking for immediate relieve of your pain through pills, this is not the doctor for you. I will have to suck it up with Tylenol until these things are removed. He doesn't want to cure your Eagles by turning you into an addict. Fine with me!! If anyone need directions, where to park and all those petty things that could annoy the living hell out of you, just let me know... Be possitive and hang in there, brave Eagles!! Animo!!

Wonderful to hear!

Does he see a problem doing the surgery with your neck fused? (Mine is nearly fully fused as well.)

I am waiting for him to review my CD. He has it but it has been 3 weeks. Should I call the office again? They told me I am in their system awaiting his review.

Mayela-

I am also in MD. I had sent you a message but can't find the one I sent. Did you ever get it?

Oops, it is right on this thread! Short term memory loss here...

Kitty9309 said:

Mayela-

I send you a friend request but forgot to add a message. I am just south of Baltimore and wonder if you would share who your surgeon at GBMC is? I go to GBMC to see my Geneticist- Dr. Clair Francomano.

May I also be so bold as to ask why you needed the cervical fusions? I shared my story in a new post and needed mine due to EDS.

I have also sent my report and now CT images to Dr. Cognetti.

I've often thought the same thing. I wonder how many are misdiagnosed with depression and fibromyalgia. They did the same thing to me.



lizajane said:

Amen! I have some great doctors.....but the questions of "are you depressed? Are you a nervous type person? Do you think you might have some anxiety?????" No to all of the above, but you're bringing a lot of it out in me be not fixing my real PROBLEM. Truth be told, Eagle's probably is not as rare as everyone thinks, all these poor women walking around diagnoised with fibramyalga and depression probably just have elongated styloid bones!!!!

tbone said:

I am from Maryland as well & I feel what your saying! I was only diagnosed by asking an ENT to put his fingers in my throat & find out what the hell was this lump sticking out in front of my tonsil. Which a 3D CAT scan showed elongated styloid. He never mentioned Eagles to me. Long story, but it took me another year to piece everything together myself & found this site.I went to John Hopkins to a doctor who treated me like shit, but finally after manipulating the bone in my mouth, said she would take it out but only the internal approach. My symptoms have subside to what I can tolerate for now, thank God! BUT if I ever decide to have it removed, I would go to Dr. Cognetti in Philadelphia PA. I figure it's only a 2hr drive from me & he's done a lot of surgeries on people on this site, so he has lots of experience w/Eagles, also I hear his bedside manor & staff are wonderful. If you do find someone more local in your process PLEASE keep me in mind, for I am so turned off from Doctors at this point I don't have the energy to deal with them. Good luck!

Mayela,

I am so happy for you!!! I think you found a great surgeon and I predict that you will soon experience blissful relief. :) I had symptoms like yours, especially the lump in my throat and the hoarse voice. I traveled from the West Coast to see Dr. Cognetti because he seemed to be the most experienced surgeon.

My worst symptoms were immediately healed after surgery. I did have a rough recovery after the second side surgery, but both surgeries were relatively easy when you consider the heavenly relief they brought.

I think I remember Dr. Cognetti handing me a tissue, too. ;)

Good luck with your surgery. You're in good hands.



Mayela said:

Hello again, my friends!!

Yesterday was my appointment with Dr. Cognetti... I am over the moon!! I will be having my surgery on December 6th...YEY!!! He was very reassuring. compassionate, understanding... I even bursted out crying when I told him about my journey searching for an accurate diagnose; he smiled, handled me the tissue and told me not to appologize. He knows about our group and is eager to help anyone.He doesn't force surgery on you, which is a very good sign. His staff is amazing and kind as well; so much that my aprehensions for being in a different state and in a hospital totally unknown to me vanished immediately. But please be aware of something: if you are looking for immediate relieve of your pain through pills, this is not the doctor for you. I will have to suck it up with Tylenol until these things are removed. He doesn't want to cure your Eagles by turning you into an addict. Fine with me!! If anyone need directions, where to park and all those petty things that could annoy the living hell out of you, just let me know... Be possitive and hang in there, brave Eagles!! Animo!!

Oh, and in case this helps with the pain in the meantime, here's what worked best for me:

Popsicles, in bulk, eaten quickly. It was the only way I could ever get any sleep at night. I probably ate about 20-30 per night, I kid you not. Some members have spoken out against this method because of the sugar or NutraSweet, but for me, it was what worked, and it worked wonders. I learned the idea from a member of this forum who came before me.

Popsicles?!?!?!?! That is amazing!!! I will try ASAP.. Thank you!!

So glad you are getting surgery from Dr. Cognetti. Great news!