EDIT: Okay, I see in another thread that you did get the 3D reconstruction to work.
@July123 Sorry, just got back from a family vacation. Did you ever get this figured out?
I never had the CT data crash the computer when I tried to open it, but it did take me a while to figure out how to access the data for use in a program other than what was on the CD. My CD came with a program called GearView. To use the data for 3D Slicer, I had to click on the ‘export’ button after entering my password.
Maybe you can tell us a little about what viewing program comes with your CD, and if your data is encoded (it will have a ‘.enc’ extension).
Hi hadassa did you have the surgery internally? Just wondering why your swallowing was painful after.
Fivetiger do you have someone to do surgery?
@July123 I have a first-visit appointment with Dr. Bove at Northwestern next week. He has seen my CT images and, based on that, suggested we meet in person to discuss it further.
He said that he does intra-oral surgery and tries to remove the SP down to 2cm or less.
Dr. Bove also said that the vessel in the above image is likely the ascending pharyngeal artery. Because of the timing of the contrast, the CT scan that I received would show only arteries and not any veins.
Fivetiger i hope your meeting goes well. What sort of scan shows the veins or did you make that yourself? Im in Ireland and theres only one surgeon willing to help me but he said he will take a few millimetres of both sides at the same time. I want the styloids both off from the top but dont want to be telling him his job. I have to pay privately and ive no idea of the cost. I might not even be able to get the money. Otherwise ill be waiting 2 and a half years! I cant even get through one day with this. Nobody seems to realise how serious this is i cant even talk its straining my throat muscles. Will I need another scan to show vascular problems before surgery?
@July123 Was your CT scan with or without contrast? Mine was with contrast, which is why you can see the arteries. Honestly, I’m not sure you would need to see the arteries unless you have strong “vascular ES” symptoms. Your symptoms are plenty indicative of “classical ES”, which seems to be more accepted by doctors and, in theory, should give you an easier time of convincing a doctor that you have ES and need surgery.
To me, it seems like doing surgery for the sake of a few millimeters is not worth it for you or the surgeon. All that tissue still has to be cut, so why not take as much off as he can get to? If your doctor has never done the surgery before, maybe he will see that he can take off more than a few millimeters once he gets in there.
Has he seen the 3D images you’ve posted here? Make sure he sees those and not just the original CT images.
If that doesn’t help…can you find a doctor in England? If you’re paying privately, you might be able to do that. I know you probably want to avoid travel expense, but it might at least be an option.
Shalom fivetiger…I did have my surgery done through my mouth. Up to about 5 months ago, I went down to Norman Regional Hospital to get my records and I found out that Dr. Runkle had my tonsils removed…I never knew this??? The reason I could not really swallow was because everything is really raw and your saliva glands go crazy. Someone had messed with the inside of your throat and it is a very sensitive area. I took it one day at a time, it was a process…for me, it was long because of being a diabetic.
I survived it and my life is better. I have other things I have to deal with now…I will be having a root canal and I am not looking forward to that!
He said he did 5 in the last 20 years! He seemed pretty easy going about it. Ive emailed him my 3d images and he replyed back and said they are great pictures and can he use them for teaching and publications. I have full ear on right side and pressure in my head with really loud tinnitus and sometimes the side of my face and jaw feel heavy dont know if thats vascular or an ear problem. Im just afraid ill be left like this and the bone behind my tonsil will break through. This is a very lonely and isolating thing to go through. Even my family are starting to avoid me i know its hard for them to understand when even the best of doctors dont. Anyway my surgeon is writing to me in a couple of weeks with costs and details and then i go in to see him. Im going to see an ent this week who is a scull base surgeon to explain my story to him and see if he can help. Its worth a shot! I feel i need at least two opinions.
July123, I was written off for 17 years…Do not give up…I too had 2 small sons when I felt I had a bone stuck in my throat. It started on my left side and a couple of years later, I started having the same sensation on my right side. You keep on asking yourself, “What was I eating, did I swallow a bone or, did I scrape my throat”??? I kept on playing that over and over and the not knowing for sure, was the torment.
Right now I am having some symptoms on the left side, again. Now, what I have to do is try to go back to Dr. Krempl. I don’t even know how I can do that??? Back when I was diagnosed, I had 2 insurances BC/BS and United Healthcare. I worked and my husband worked so, that was not an issue. The physician who referred me to OU Physicians was my Gynecologist. To him, I am eternally grateful for doing this for me because he was with the Mercy Hospital System, and trying to get them to go outside of their own system is like pulling teeth! But, Dr. Carpenter did.
Dr, Carpenter just retired on July 31st 2018 and the physician who did my surgery back in 2004, R. Layton Runkle MD passed on Dec. 2012 so, I have to go back to Dr. Krempl who diagnosed me back in 2004. Another complication is, because I no longer work steady, I only have BC/BS through the Marketplace…UGH. My husband no longer can work so, he is on Social Security. So, you talk about complications but, at least I know the symptoms and I have a diagnosis!
All I need to do is press in and start the ball rolling…I’m more than sure it’s going to be stressful because there are plenty of people to tell you how they cannot do anything for you rather than, how they can be of help to you.