I posted this in the Facebook group so apologies for those reading this for a second time.*
I want to state that I never wanna discourage anyone on here from seeing a doctor. I understand we are all human at the end of the day and maybe I caught him on a bad day.
I feel like many of us have had both good and bad experiences with different surgeons and the medical system as a whole.
I simply wanted to express how hard this really is and sometimes compassion and empathy goes a long way.
I just had my second opinion with Cognetti and honestly it was a really disheartening experience. To start my apt was at 2pm and I traveled almost 4 hrs to get there. I wasn’t seen until about 3:45. He had what I assume is an attending or resident come in and stick that nose thing down with no numbing spray. He brought in about 3 students and a nurse with him when he met with me which I assumed when they asked if I was okay with that it would be like 1 other person besides himself. He basically told me nothing helpful or new just that he heard I saw Constantino and agrees with him but that really the surgery may or may not help so he will never recommend it. He hardly looked at my scans and he palpated around and where I said “ow” he said feels very “tight” and that he was feeling my “ligament” said what he feels causing me issues is my ligament but compared it to a sprained ankle.
He said to try physical therapy (which ive done for 3 months) and advil if I don’t wanna keep taking Lyrica and that maybe it will get better. That he could see me in 6 months for a follow up. Gave me no plan I left without any discharge papers or notes and no direct to go in.
I would just like to say that as a patient telling someone who is in this kind of pain to keep taking advil and try PT is really really wrong. I have been on 75mg of Lyrica 2x daily and diazepam adding in carbamazepine for break through pain. WHY WOULD HE THINK ADVIL CAN TOUCH THIS ???
This was so different from what Constantino said …that likely the ligament will continue to calcify and get worse. That for my age he was concerned with the length, amount of calcification and the angle my styloids were, Constantino said he saw a difference in both sides my right be significantly more problematic which is my symptomatic side. Cognetti said really no difference.
Constantino was able to give me actual numbers of not being able to guarantee anything but based on what he sees I would fall in the 80% range that see significant if not all improvement. He said because I am a less complicated case he feels even more confident that I am a good candidate for surgery. He gave me hope without overpromising anything.
I am so embarrassed I ended the appointment with Cognetti sobbing in front of all these people and he just walked out. I got emotional during my appointment with Dr. Constantino as well and he not only comforted me but also told me “I promise not to abandon you as my patient no matter the outcome of surgery” I take that as if the surgery is not successful he will work with me snd think out of the box to get me there.
Constantino also recommended I stop PT as it could aggravate symptoms if the PT is not well versed in ES. This is the complete opposite of what COgnetti said.
Don’t tell me you agree with a different doctor and proceed to tell me completely different things.
For those of you who read this entire thing thank you I just don’t know what else to do. I am so scared and feel less confident. It makes me think no one really knows what to do with this disease and I just have to accept that this is my life now.
