Losing it

I had surgery scheduled next week to remove the calcified muscle on my hyoid and styloid elongation. Just had an ultra sound, and it doesn’t show evidence of carotid compression. Doc is now less enthusiastic about surgery, isn’t as sure it can help my stroke like symptoms, and only wants to remove hyoid spike now.

I am beyond devastated. The hyoid spike is unusual, but ES is typically from the styloid elongation. That’s the one that likely causing the gagging, arm pain, neck pain, shoulder weakness etc according to the doc. But now he changed his mind about taking it out.
Even if I go through with just 1/2 surgery, if the symptoms don’t resolve how will I know if I have to keep searching or just the remaining calcification?

I’m losing it. Been in bed for 2 years now, and thought maybe next week I could begin putting my life back together.

Can anyone who has been to dr Cognetti give me an idea of what kid of information to send him? What’s the wait time on a reply? Is it hard to convince him to take you on as a patient? I would be traveling from out of state.

Please, anything would help. I’m in a pretty bad place right now.

Hi SnappleofDiscord,

I don't have any answer becaue I'm in a diffrent country. I just wanted to let you know I red it and feel for you. I hope you get help and a solution to you problems. When I told doctors about my symptoms of stroke they said it was panic attack or something else, maybe lack of blood sugar, which was very frustrating. I will think of you and wish the best in your way! Regards /SaaMee

Oh no! That's just horrible to be all set for surgery and expecting relief and then to hear it's not going to happen is really, really hard. I was in sort of similar situation and I flew from Hawaii to Ohio to try to get a surgery on my right side and they turned me down. I was devastated. I was feeling so horrible I couldn't work and it was super hard to fly all that way. But in my case, I just stayed there at the Cleveland Clinic and went through all the tests they put me through and called the surgeon several times until finally he referred me to his partner that had never done an Eagles surgery before but was a very skilled surgeon. He also tried to convince me that I didn't need the surgery, but somehow I convinced him.

Is there any way you can show the doctor some of the information from this site? Maybe print out some of the ES information to show him how Eagles can really cause some of the symptoms? Can you take a crack at going into his office and pleading?

If you want to contact Dr. Cognetti, I would say call his office and tell them your situation. You most likely will have to send in a CT scan and then wait. A quicker option would be to make the soonest possible appointment and just go with your CT scan and hope. While that would be the quickest, you run the risk he will turn you down. I went all the way to Philadelphia from Hawaii when I needed a revision surgery for my first surgery on the left side and he turned me down. But I think it's harder to get a revision surgery than an initial surgery, so you would have a better chance.

Also, with hindsight, I think it's possible that I might have been able to convince him if I persisted somewhat after he turned me down. I'm also thinking that with the severity of the symptoms you're having, you would be able to convince him. In my case, I had very unusual symptoms, so it was kind a scary situation for a surgeon. I think your case is a lot different from that because your symptoms are very consistent with Eagles and he's seen a lot of cases. He's also told one of the forum members that the only way to tell if symptoms are really from Eagles is to do the surgery and see if the symptoms are resolved. I honestly think you would have a decent chance of getting him to do the surgery.

I think you should also try to find other doctors that you could get to. Check out the doctors list. I'm posting a new one tomorrow too. Call any of them and see how soon you could get in.

You can send Dr. Cognetti the CT scan, then call his office, they may schedule a "conference call" with you. Dr. Cognetti is doing tele-medicine now. Good luck!

Really sorry to hear that, to have a date so close and to find out like that, and you've done so much research to help yourself, it's understandably a blow. It's a dilemma about whether to just have the hyoid spike done or not- as heidemt said some people have found that doctors are less likely to do surgery again if you've already had it, although I know this is different.

I did print out the research which backed up my symptoms to show my doctor- so in your case the ones where people have had stroke-like symptoms, there's some in the ES Information section. Did you get the results back of the CT you had when you had your neck in different positions, did that show anything? And was the ultrasound done with your head in a position to bring on symptoms? Maybe you could persuade this doctor to rethink his decision if you show him more research, and if not as heidemt said, try other docs.

You've done so much to try to find the answers yourself, so don't give up now, keep fighting! Let us know how you get on.

Thanks guys. Trying to get me records sent to me so I can send them out to Cognetti.
I’m also concerned that it will be harder than this has already been to find someone to do Revision surgery if this doesn’t work. If I can’t convince my current doc to do the whole surgery, it seems like self preserving move to cancel it and start over. Ugh :’(

I hope I have better luck on the phone with the Cognetti staff this time around, haha. They were less than helpful originally. Haven’t checked up updated dr list yet but fingers crossed there’s more near MD.

CT scan was kind of in symptomatic position. There were some issues where the radiologist didn’t know how to perform that kinda scan, the contrast dye soaking me down instead of injecting etc. the head holding device made it hard to get in a good demonstrative pose. It did show possible compression of a vertebral artery tho. Which baffles me even more as to why doc is less enthusiastic about taking out the calcified styloid in Front of it.
Ultrasound only did part of my neck, and apparently I have to go back Monday to get the rest tht was skipped. Hoping to try and talk sense to the dr after that.
Do Not want to start this long painful search over again.

Hope that Monday's ultrasound works better then. It is strange that the doctor didn't want to operate as the CT shows something not so good. Hope that you can convince him at the next appt.

What state are you in? Dr. Mathew Ellinger in Raligh NC, Duke system.. is a great surgeon for this. Have your Dr. contact another surgeon who has done the opperation to get an oppinion. From my esperience, they don't like going in again... so, get it all out while your having it done! There is hope. You know the diagnosis. Wait until you find a surgeon to get it all out and make you feel assured. Best of luck. I've had both sides removed and I feel much better. You will too!

Thanks again for the kind replies
Mooncat- I'm in Maryland, and travel is tough. The motion of the car makes my symptoms AWFUL! But I'll go anywhere.
Thanks for the tip, I'm putting him on my list of doctors to harass.
It's been very difficult to get doctors to call eachother, even my current treating doctors! They don't get paid and it can get a little hairy with HIPA regulations.
I don't mind tho. I'm stuck in bed with nothing to do, I'm their worst nightmare! MUHUHAHAHA!

Jules- Other ultrasound still didn't check the upper calcification, but says Hyoid isn't hitting my spinal arteries too hard. Doctor suddenly called and canceled surgery all together. "No longer enthusiastic about the results" he says, along with me needing to lower my expectation. Super. Did not want to discuss that surgery was already empirical and he didn't expect to see anything on the ultrasound.
Says I can come back and talk to him in January. Not entirely sure what he thinks is going to change about 2 years disability in a few weeks.

Heidemt- Took your advice and did both! They seemed a little surprised. Waiting to hear back or I'm storming the place.

Yeah, I think if the doctor is that unenthusiastic, you need a different doctor.

What exactly are your symptoms, blood work results?
I’ve had both sides removed and am concerned about regrowth and how to Proventil it. What causes this?
My red blood cells have alaways been low. Low vitamin D. High bilirubens. Depression. Ansomnia. Any similarities? What was said to be panic attacks but I would fall faint… Cold sweats?
Aside from pain what are your symptoms?