Did any or all of you ever have a VERY serious sinus infection on the affected side in years past? Is the pain in the turbinates..not in the sinus? Have you tried topical with a Q tip on it? Do any of you suspect that you have herpes with a sharp pain at the top of your head and in your teeth on that side?
OK, I am registered with user name Rosemary101. would love to join your group. I have written you as a guest about my latest attempts at stopping the burning pain.
Where would you put the topical? I'm a dental hygienist and have access to lots of topical, I could probably OD on the stuff..lol
I just put it on a Q tip and apply a little right at the site of the burning pain at the top of my nose inside. It only helps for a while.. but at least I can get to sleep. Have you notices the pain stops while you are sleeping and starts again when you become alert and awake? That says nervous system to me..
ps.. I like the raspberry..lol
I'm not a doctor but like everyone here, I was let down by my doctors, so I tried to take the problem in my own hands and read as much as possible on the subject. I've compared my scan to other people's scans but none of them had the same symptoms as me. This is why i'm so curious about your scans, especially your turbinate shape. I've never seen someone with a turbinate shape similar to mine. I can also send you my scan, if you want. I've sent it to some people but I never had the chance to see their scan(they didn't even have one). I would be very greatful if you could help. I would be glad to be able to help you with that. It's possible to see your scan even if i don't have the CD or the program. There are 2 possibilities:
1. First one, when opening the program, you may have a button that gives you the possibility to save the pictures directly on your computer. If this doesn't work, there is still a second trick(I've used both)
2. You can save it on your computer by using the print-screen button on your keyboard. By pressing that button you actually take a picture of your desktop at that moment. Simply press that button and then paste it in MS Paint. Then save the picture like you normally would). It's not hard, once you get how it works. Search on youtube "prtsc button" and the first link explains it clearly.If you're still having problems, you can also ask me, I can do a tutorial for you and show you how i do it.
It can take some work depending on the number of the slices. But I'm only curious of your coronal(vertical) slices.
I hope this helps.
I was kinda thinking I couldn't see them because the nordstar program that runs the CAT doesn't work on Apple which is what I have. I have no problem copying mine and sending to you. At the time I took them I had a bad sinus infection with lots of inflammation, so may not be much help.. but I am thinking this Neurosurgeon I am seeing in 2 months will do an MRI. Both of which really can't see neuropathy unless is is caused by pinching space where the trigeminal nerve enters the skull at the nose out to the face and is being pinched by other nerves and vessels. Consider me in with you on this thing.. I am so frustrated at the medical approach that has a protocol and when they don't know what it is, they send you down the line to look like a hypochondriac with no solutions. You can just see that glaze come over their face when you tell them your symptoms and they don't add up to a simple surgery to fix.
Sincerely
Your new friend in pain… Rose Mary :-)
To my knowledge I have no infection in my nose, or outside on the skin. My skin has looked clear on the outside. but it could maybe be something undetected on the inside?(I've recently read something about Klebsiella Ozaenae. It's rare in developed countries and this is why it's usually undiagnosed. Symptoms are dry nasal passages and bad smell) Have you had a nasal swab done? maybe it would help to rule out some rare viruses/bacteria. This needs to be done by an ENT doctor.
>PS have any of you tried a topical like the dentist uses before an injection place on the sore spot with a Q tip? It >works sometimes.
I went to the ENT once and he sprayed topical anesthetic in my whole left nostril. it didn't help for the constant painful stinging in my nostril, but I had less pain while breathing in for a few minutes...then the pain was worse for some days afterwards. .
>Could I somehow copy my CAT and sent to you??
so you are not able to view them on your computer, right? What do you see when you try opening it?
you said your septum is deviated to the right. Is the pain on the same side?
yes pain on the side that the septum is push toward. there are some ganglion above the turbinates that could have been scared during a very bad infection years ago that I suspect play a part. I have taken many physiological courses in college that map out pathways of the nervous system so I know how complicated this can be. My hubby is a Dentist and keeps focused on realities and not just fears…. Lets hope we can find some causes and cures here! Glad to meet you, my name is RoseMary….
so, you can't see them because you have an Apple, right? If it's not working on your computer, there might be some other solutions but unfortunately it needs some extra effort. Firstly, You could try to open them on a friend's computer and save them the way I've explained in my previous post.But from my side you could also send it to me by mail, sure if you really want it, but I just wanted to let you know that I have nothing against that. I can give you my personal mail if you want, and I would pay for the package. You could ask for a copy from the CT-scan office and send it to me if you fear that it might get lost. I'm really open to do everything possible.
" Consider me in with you on this thing.. I am so frustrated at the medical approach that has a protocol and when they don't know what it is, they send you down the line to look like a hypochondriac with no solutions. You can just see that glaze come over their face when you tell them your symptoms and they don't add up to a simple surgery to fix."
riiiiiiiiight..... "you're too obsessed with the pain, just ignore it"..... " go to the psychologist"....."It hurts? noooo it doesn't hurt, you're just obsessing over it !"..... "you're faking it!".... I've heard it all... I know what you've been going through.
I'm really glad to meet you too! We know the best how it feels like for you and for me.
I agree with you on that, the problem might be complex. It might also be the sphenopalatine ganglion. But sometimes an UPI can make the nerve sensitive and everything that presses the nerve might provoke the pain, even if it didn't before. In this case, you need to find out what is pressing the nerve, and if you solve that, it might help completely or almost completely with the pain. Although the nerve will still stay sensitive at any touch that is usually not painful, maybe avoiding that touch alone through a surgery might help you have a normal happy life. There is still the possibility of radiotherapy or surgery on the sphenopalatine ganglion, but it has some side-effects. I leave that as my last resort. I hope I don't need to get there...
I'm curious how many of you get from time to time that fizzing feeling inside your nose near the eye on the painful side(like an air bubble moving inside for one second)? How many of you have thick mucus down their throat sometimes?
I'd like to ask everyone just 2 questions, it would be really important that as much as possible people could answer this. I noticed that people have pain on the same side their septum is pushed into. If I am not wrong, this might be an important hint to our diagnosis. If I am wrong, please let me know.
1. Firstly is your septum deviated to the left or to the right? (i know that the shape can sometimes vary but at least roughly said, is it more to the left or to the right?) Please ask a doctor if you don't have a CT scan and you don't know.
2. On which side is your pain, left or right?
It would be great if as much as possible people could answer this. Please join in... let's help ourselves...
i want to know more
how are you doing now with the trigeminal neuralgia?