Can anyone see anything?! Was this scan helpful at all?!
We're not experts on here, so you do need to check with the doctors, but it does look as though they are quite long, and the second scan picture looks like they're quite angled. It's not easy to tell exactly, but they look like they're angled towards the cervical vertebrae processes, and the angle can make a difference as structures can be compressed between the two. There is research to show that the angle of the styloid processes is just as important as the length for causing symptoms. Did you see a report- did they mention the length of the styloids?
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I have been diagnosed almost 5 years ago, this was a repeat to see Hyoid bone, the lengths of the styloids, and to see if anything was compressed etc. Im a bit upset that they did not include the report even though I had requested it and they did not measure the styloid lengths either. All they said on the report that my Dr read was "more than 3cm" Well I knew that already! When I was first diagnosed, the length was 4.5cm. This is so frustrating when you tell them exactly what you want and are looking for and I didn't much information from this.I will be making a phone call tomorrow to get to the bottom of it. Its not like we want to go through all these tests for no reason, not to mention pay as much as we do for them. UGH!!! I just want answers to know if I should get them out. Jules, thanks for taking a look. I don't know what else to do at this point......
Jules said:
We're not experts on here, so you do need to check with the doctors, but it does look as though they are quite long, and the second scan picture looks like they're quite angled. It's not easy to tell exactly, but they look like they're angled towards the cervical vertebrae processes, and the angle can make a difference as structures can be compressed between the two. There is research to show that the angle of the styloid processes is just as important as the length for causing symptoms. Did you see a report- did they mention the length of the styloids?
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You'd need a CT with contrast to show if the blood vessels are compressed. Getting a really accurate measurement is difficult for styloid length; there've been quite a few people on here who have found that their styloids are longer when they've had them removed than when they had a scan. So unless there was a massive difference in the length to 5 years ago, it probably doesn't matter too much? Did they inject the dye into your veins when you had the scan? I agree, it's so frustrating when you ask for something particular, and you don't need to have more CT scans than necessary because of the radiation too!
I hope that you get somewhere with your phone call!
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I did have a CT with contrast. What you see are the images they had on the CD for me. They forgot the Dr's report so I did call and request it. Im waiting for them to fax it. They also told me that I need to call my Dr who ordered the test to call the Radiologist who reads the scans to request everything I had asked for, hyoid bone, compression of blood vessels, etc. Which we have already gave them a complete list prior to having the scan done. How in the world are they going to see blood vessels etc if they didn't take images of them? Im not getting anywhere as im told "well I don't know what to tell you other than have your dr talk to the radiologist" UGH. Has anyone else had this problem. Is it worth contacting my Dr and asking him to request it? I keep a copy of everything for my own. I just don't want to become such a nuisance to them. *sigh* As far as the length, the doctor doesn't have my old copies and isn't really interested in the old ones. This doctor is my Neurologist who has been helping me, as I live in a bit of a remote area so I don't have access to many doctors. I hope this give a little clarity as to the background. Im open to any suggestions
Jules said:
You'd need a CT with contrast to show if the blood vessels are compressed. Getting a really accurate measurement is difficult for styloid length; there've been quite a few people on here who have found that their styloids are longer when they've had them removed than when they had a scan. So unless there was a massive difference in the length to 5 years ago, it probably doesn't matter too much? Did they inject the dye into your veins when you had the scan? I agree, it's so frustrating when you ask for something particular, and you don't need to have more CT scans than necessary because of the radiation too!
I hope that you get somewhere with your phone call!
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That is sooo frustrating- and you've had to pay for this? Hope that the doctors report perhaps includes some of that info...
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This is the report I received. What are your thoughts on this......
11-20160310_104748.jpg (1.67 MB)
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It doesn't outright say that the styloid is compressing that internal carotid artery, but that it runs along beside it- if it is touching this artery then that can cause pain along the length of the artery. It also mentions that the left artery is dominant- I think that this can happen if one side is compressed, then the other side takes more blood, but we're definitely not experts! Can you talk through this with your GP/ primary care doctor? The styloids are obviously elongated, although 3 cms isn't huge like we've said, the angle is important, and yours is obviously alongside the ICA. (There's info about what symptoms that causes in the ES Info section, you could compare that to your symptoms). They measured them longer before, didn't they, anyway? It's more important about the ICA.
There's no mention about the hyoid or calcified ligaments, so presumably they're all okay? Do you think you'll opt for surgery?
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Hey there, sorry took so long to reply back. Life got a bit crazy. Anyway, I just changed Primary doctors, so I am not sure about asking him about he thinks. Its worth a try I guess. As for the hyoid or calcified ligaments, I am totally clueless because they didn't look at them, This is why im so frustrated about how they did the scan, how they read the scan etc... Not to mention it was more than they said it would be by like $700!(I don't want to come off as a complainer, but this scan was ridiculous) Its been one things after another. Anyway, 4 years ago, my styoids were measuring 4.5cm bitlaterally. They did not measure them on this scan so I am not sure if they are the same or have gotten longer. I hope we can find something about my ICA for sure.
Im waiting on a call back from Dr. Cognetti to see what his thoughts are about my case. His nurse said they would like at my scans and discuss things and she would report back to me. Im patiently waiting (ok, trying so hard not to call them and bug them on a weekly basis!) But hopefully soon they call. If there isn't anything going on with my cartoid artery or hyiod Im hoping from the scan Dr. Cognetti will be able to see it on the scan if they did the scan right. Im crossing my fingers. Id like to find something out soon. We are looking at meeting our deductible, if thats the case Id like to get the surgery while its met :) That is if Dr. Cogetti thinks Im a good candidate. I hope this helps with some of the questions. I know its taken me some time to get back. The day I had my scan was very crazy, I think my daughter had a seizure. So I put all of my things on hold, got her to her appointments. The tests came back fine but her pedi said the test can be normal and her have them?! So he said to wait to see if she has any more spells and go from there. It sounds like if she does have them, she would grow out of them by her teens. That is reassuring. I just pray its nothing. Life has to be crazy or it would be too boring right?! :)
Jules said:
It doesn't outright say that the styloid is compressing that internal carotid artery, but that it runs along beside it- if it is touching this artery then that can cause pain along the length of the artery. It also mentions that the left artery is dominant- I think that this can happen if one side is compressed, then the other side takes more blood, but we're definitely not experts! Can you talk through this with your GP/ primary care doctor? The styloids are obviously elongated, although 3 cms isn't huge like we've said, the angle is important, and yours is obviously alongside the ICA. (There's info about what symptoms that causes in the ES Info section, you could compare that to your symptoms). They measured them longer before, didn't they, anyway? It's more important about the ICA.
There's no mention about the hyoid or calcified ligaments, so presumably they're all okay? Do you think you'll opt for surgery?
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Sorry that you have this worry with your daughter too- hope that she doesn't have any more. Did she have a temperature?
Hope that you hear from Dr Cognetti soon, the waiting is sooo frustrating....
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Just wanted to pop in and let you know that I am still waiting to hear something back from Dr. Cognetti or his nurse. I called again last week just to see if they had gotten a chance to go over my file or for any new information and I havent heard anything yet. Still keeping my fingers crossed that they call soon. Im trying to be a patient, patient but it definitely is hard to wait… 
I know hes a very busy man, I don’t want to keep calling and bugging him.
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Yes I mailed them (Dr.Cognetti) all my info, I believe it was April 22nd. I haven’t had response yet either. I haven’t call yet, been trying to wait patiently. I will let you know if & when I do.
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If you’d be willing to travel to California, you could contact Dr. Samji’s office. I think his office is getting back to people fairly quickly.
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I had all my things sent to him in March (not sure of exact date) but hopefully we both will hear something real soon. Have you sent anything to any other doctor yet? I haven’t, Dr. Cognetti is my first.
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Thank you, I may have to do that. Im in ND so Id have to travel anyway and Ive never been to Cali.
I tired 2 local doctors (in MD) over the last few years, with no support for Eagles. So he’s the 1st I’ve sent my stuff to out of state. He’d be only a 2&1/2 hour drive away for me. Still hoping!!
So far I have sent my info/files to Dr. Cognetti (march '16), Dr. Samji, and Dr. Alemar.
I have been talking to Dr. C’s nurse and as well as Dr. Samji’s nurse. When I got my CT scan they failed to measure my styloids on either side. SO, after talking with the dr’s nurse before we can decide on any course of treatment, I need to go to the Dr who ordered my CT and have them reread the CT to measure my styloids and dendum my report and then send the correct report to the drs and then go forward from there. Very frustrating considering when I noticed they didn’t measure my styloids I told the DR. right away and he told me that if Dr. C wanted the measurements he could do them himself! NOW here I am, having to go back, wait probably another few weeks to get this all cleared up! If they would have listened to begin with we could have bypassed all of this headache. Im to the point where I am done being so nice about things, Im going to start being pushy. I should have put my foot down in the office then but Im afraid of making people mad. But if we don’t stand up for ourselves who will? Im sitting here with a huge ice pack on my neck, shoulder, and collar bone because it hurts so bad and is very swollen. I hope I can hear back from then the sooner the better. But I did want to keep everyone updated on what has been going on with the drs and myself, thanks for all of your support!
Sorry to hear you’re having so much hassle- that is so frustrating. Thinking of you…