I finally have everything in place. Insurance approved my surgery at UC San Fransisco for March 21st. I am not sure yet what route the doctors are going to take. The insurance appoved the transoral and my doctor wants to do the external approach. I laughed and told them they may end of doing both. Actually, he will do a thorough exam after I am out and make a decision from there. They aren't really sure what is poking out of my left tonsil..they think it is the calcified sylohyoid ligament. He will consent me for both approaches so he can do what ever he needs to do. I am so ready. I had some relief this past week (prayer works)...four days of bliss...little or no pain. But it is creeping back and kept me up awhile last night. Also, my third thyroid biopsy came back as suspicious for follicular neoplasm. This is a "trash" diagnosis as they can't tell whether the nodule is malignant or not. About as good as the two previous non diagnostic biopsies I had. I have a new endochonogist who has taken over my case. She told me the risk of malignancy is as high as 50 percent but she is willing to wait until June to do another ultrasound and will most likely remove the nodule to make a final diaognosis. If it is malignant I will need to go back to surgery a few weeks later to have the whole thyroid removed. Not sure if I will need radioactive iodine treatment but I told my husband he will be able to tell all his firned his wife is one " hot" chick! : ) had no idea thyroid nodules were so pesky. My husband was nervous they are waiting so long..it will be a year in June since the nodule was first found. The doctor said these kind of cancers are very slow to grow and do not metastisize very quickly...we have time. She told me to get the Eagle's problem taken care of first. I told my husband by the time I get these surgeries done my neck may look like I have been in a street fight! : ) What a year...had no idea I was going to learn so much about Eagle's Syndrome and thyroid cancer. But it is all good. I am grateful to have met some nice folks who understand my troubles because they have been there done that. I will keep you posted as I go along. I hope evryone who is looking for help finds it and if you have had surgery, I pray it was successful. Take care, Abigail
That is awesome news. What a GREAT BLESSING! Yes prayer does work. I hope & will pray you do not have thyroid cancer. You will have to keep us posted on which approach your doctor chooses. Later on if you are pleased with his/her work please post their names only if you feel comfortable doing so. It is amazing how much I have learned about Eagles since December. I do not understand why it takes so long once we are diagnosed to have the surgery. Oh well forget about that. Let's focus on the positive. Woot Woot!!!
Hello Abigail. I am new to this support site but am very interested in your eagle's syndrome journey to find treatment and your courage to finally have the surgery. With your thyroid problem also, I wish you the best of outcomes with that and the eagle's syndrome complication. I pray for everyone who is experiencing rare diseases and afflications that have little treatment options and are not understood by most doctors. Please keep us informed on your situation and if possible let us know about the doctor chosen to do the operation and the method used. Be strong and have faith!
Hey, Viperbone...gotta love that name! I am the queen of rare! Makes me the special odd duck I am. I have a rare form of lupus as if Eagle's wasn't enough. I also have a rare deformation of the right ventricle of my brain. It is called a diverticulum...makes my brain look like it has a big hole in it. Yet....here I am...able to be a royal pain in the butt without any difficulty. : ) God is good! ( And has a really good sense of humor!) Thanks for your support and prayers...always accepted with deepest gratitude! I will be glad to keep you posted...let me know how you are doing as well. Only thing I worry about with the surgery is that I might lose Wi-Fi...I get really good reception with these stilleto styloids! Ha! God bless! Abigail
Hello Abigail. Thanks for adding me as "friend". I called myself "viperbone" because when I finally saw my ct scan that is what it reminded me of. After reading your comments to me you will be given extra prayers and good energy on my part. How do you cope and not fall apart! You must be a very strong person and I envy you. Sometimes I feel like I am falling apart. Speaking of diverticulums, five years ago (12/22/07) I had one in my lower colon on the left side that popped. That put me in the hospital for seven days with a temporary colostomy. I believe this was due to a pain killer lodging itself in a diverticuli that I had and it burned through it. I was given this medicine after shoulder surgery (11/8/07) and this happened shortly after. I did have reconnection surgery (6/10/08) but had complications because of adhesions and the knicked me in the wrong place. I also got chemical hepatitius from some drug given to me and winded up in the hospital 3 weeks later for 14 days. Anyway that is when I noticed the sensation and pain of something on the right side of my throat. I believe it came from the tube after the surgery they left in on the right side of my throat for a week. Yuk! I can still feel it! It took a medical journey of five years of pain and unusual symptoms to be diagnoised with "Eagle's Syndrome". I'm exploring the surgery solution but the truth is I am kind of afraid and chicken because of what had happened. I am trying to weigh-out the good and bad of Eagle's Syndrome surgery. We are all suffering and I admire you moving forward despite your other problems and drawbacks. God bless you and keep you. Forgive my muttering on about my problems but sometimes we have to let go to someone who can understand our situations. Take care of yourself and always be positive. You are in our prayers for brave souls and strong hearts. Elaine (viperbone)
I was thinking of you today. The 21st is just around the corner :-) Have the doctors decided what approach they will do? I think your doctor wanting to do the external approach would be the best. I do not think the insurance should have a say in the matter. Hope your Eagle wings are calm today.