5 hours after surgery with Dr. Cognetti

Hope that you heal soon, & hope that you get the chance to rest! Are you sleeping propped upright, that will help with swelling? Big hug to you too, take care! :bouquet:

Hi Tiredmomma4 -

You’ll be amazed by how invisible your incision becomes when it’s fully healed. I had fairly long incisions, but they’re so much a part of my neck creases now I have trouble differentiating between what is crease & what is scar. Sending you get well wishes & agree w/ Jules - hope you’re able to rest. That’s the best activity to speed healing along.:sleeping: Ice, elevation (keep your head up even at rest) & pain meds will be your best friends right now. :two_hearts:

Hi BrooklynGirl,

Glad your nausea is gone & you’re doing well w/ just Tylenol. That’s fantastic! The numbness around your incision will disappear gradually. So sorry you ended up w/ a lip droop but it’s not an uncommon side effect of ES surgery & nearly always fully resolves in a few months. I’m not sure if a dysfunctional tongue or a dysfunctional lip is worse after ES surgery. They both cause uniquely different problems related to eating, drinking & talking. I hope your lip isn’t too bothersome & you continue to heal quickly!
:hugs:

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How are you feeling now? Was this first or second incision are both sides now completed?

Hi Aidan,
I am almost 3 months post-op from my first surgery - left side external removal.

After the 2 month mark I could say that I was glad I did it. Healing takes time and I had some ups and downs before then. I still have nerve issues in and around my neck and chin near the incision (numbness, tingling, some sharp/shooting pains.) Its mostly just annoying and I do wish it wasn’t that way, but it is better than the pain the styloid was causing.

I desperately want the right side out but will wait at least another 3 months to allow for more healing of my nerves on the left side. The nerve feelings are strange and annoying and I don’t want both sides of my face to feel this at the same time.

Peace,
BG

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Have you Noticed any major improvements since the first Surgery was done? What types of diagnosis were you given prior to finding out about Eagle Syndrome? Wish you wellness soon xx hugs xx Aidan :sunny: :sunny:

Hello, I’m a newbie here. Just joined! I am so happy I saw your post. I am seeing Dr. Cognetti for surgery November 1st. I am so thankful to finally get a diagnosis. I am quite nervous for the surgery with all nerves around the area. Reading your post makes me feel a bit more at ease. Did most of your symptoms of ES disappear, I am so worried of nerve damage… Congratulations on your succesful surgery. I am also traveling from Upstate NY. Feeling a bit anxious about being there for a same day surgery and back on the road.

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Hope that all goes well! If you have a long journey, is there anywhere you could stay locally overnight, it might be an uncomfortable trip? If not then one of those travel pillows, & maybe an ice pack might be helpful- hopefully others can chip in with travel tips- I’m UK & they tend to keep you in overnight here.

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Yes. Plan on staying overnight and close to hospital. Thanks for the suggestion. Greatly appreciated!

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Phew, that’s good, couldn’t quite imagine a trip like that straight off! A wedge pillow’s a good idea to sleep propped up, laying flat will be painful for a bit!

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Hoping you are doing ok been awhile since I was on here. I live also in Montreal so not that far from Brooklyn x x

Aidan,

How are you doing? Did you ever have surgery?

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Hi Isaiah, no luck yet, I may be getting bad news soon a tumor taken from my stomach one bleeding in 2014 now another one taken Sept 17th. Histology reports back but they already want me now to see a Surgeon do not still yet know why but suspect bowel cancer, my Dad died from this so I am waiting,

should know more this week phone calls. My Gastroenterologist will call on the 16th Friday. I also put a call into my MD to know histology result tumor & biopsies. I have ENT appointment 11th February 2021 I was also diagnosed with also TMJ Right Jaw by Dentist.I had CT Scans Contrast

stomach even chest, Tumor was close to appendix area. I was on Facebook yesterday a long discussion on Eagle Syndrome Group a Woman there diagnosed with a rare form of Endocrine NET Tumor Induced Osteomalacia from Pituitary Tumor & she has also Osteoporosis. I have a small

Pituitary 4 mm & Osteoperosis the NIH thinks the TIO caused her ES she had both sides out, they now are looking for a rare tumor they think is in her heel foot it is called a Mesenchymal NeuroEndocrine Tumor she goes back for more test & if it is the one she likely will be Cured once removed so I will ask

the Doctors about these as well when they call her Alkaline phosphate was low causing bone breakage. Christina Frazier post Sept 20th Facebook it was Denise Daviau. Hope you are well Isaiah_40_31 all the best wishes

So sorry to read that, Aidan. I hope that it isn’t bad news when you get the results. Let us know how you get on :pray:

Thanks Jules x x I will

WOW, Aiden! I had hoped to hear you were in good health & making progress toward getting ES treated. I’m so sorry for this new challenge you’re facing. I also hope your histology result & tumor biopsies come back w/ the best possible news. I am glad you don’t have all the problems of the gal on FB you referenced. How hard for her. I also hope she is able to overcome all that she’s dealing with.

I will be thinking of you & praying for your full recovery from cancer & a helpful ENT appt in Feb. 2021.

:hugs:

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thanks Isaiah, I will also be asking my Doctor to look for NET Tumor she had & also the TIO phosphate issues she has, NIH feel strongly it was the cause of her Eagle Syndrome she & I both have pituitary Tumor & Osteoporosis there is also a treatment if tumor is not found so TIO Tumor Induced Osteomalacia is involved in Eagle Syndrome with the NET Tumor Messenchymal in some

Complicated but interesting, Aiden. I hope you have nothing additional, but if so, HOORAY for the info you got from the FB ES Group!

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