Not making it up

Just had my follow up visit this morning after having an MRI two weeks ago.

The image shows a mass of inflammation called "Cavernous sinus syndrome" right where my pain is coming from.

I have to get a spinal tap on Wednesday to rule out cancer.

So in some ways I'm happy to not be told I'm imagining the pain. I've had this since last November, been to numerous doctors, all of which were completely unsympathetic. One told me to go home and see if it went away on it's own. One just kept sending me off to try different meds (mostly for migraines) without looking for the cause.

The neuro gave me a prescription for gabapentin to help with the nerve pains. I'm hoping it helps.

I'd rather die of cancer than be told nothing's wrong and live how I have been for almost a year. Pretty disgusting to me that erectile dysfunction gets more funding than very painful ailments that don't have as much market(rarer).

And I just got insurance at the beginning of this year. It's disgusting that myself a year ago without insurance would have just been S.O.L. Even with insurance I had to wait to get the MRI authorized. And insurance I had from my previous employer denied a $240 prescription my doctor prescribed, so I know first hand it's no guarantee.

I so agree with you about finding out that you really have a name now for what is going on. I was scared to death at first that I would be labeled crazy , in fact one ER did accuse me of being a drug addict. Also the level of ineptitude of the doctors amazes me still, one told me it would go away in two weeks, wtf?

You know I can relate to the erectile disfunction comment, every time I see one of the multitude of commercials for it I want to throw a brick through the TV.

Hopefully the gabapentin works for you and gives you some relief

Wendy

I agree,, they spend waaay too much money on those commercials and not enough on us!! I had to have sinus surgery deep bad infection in my sinus cavity.. Good luck!!!

This is crazy that you posted this. I have had TN since 2008 and my last 4 MRI's only showed the same thing as yours. My neurologist keeps saying I need to get my sinus infection taken care of but I don't have any symptoms of one.

Shindig , I had many sinus infections leading up to this for years. My MRI showed pus which is really gross, but after the surgery I had pain (tn pain)on the floor of my sinus cavity above the tooth (which had a double route canal done on it) when the ENT sprayed lidocaine in my sinus cavity I felt something at the top of the tooth too. Which was supposed to be dead at the time.

All very weird Stuff. I eventually had the tooth pulled thinking it was cracked, pretty sure it was, I was hit in the face when I was 11 years old. Now the only time I get that pain is when I get a sinus infection. Still not sure if the Endodontist put a hole in my sinus cavity(I got a severe nose bleed after) when he performed the second root canal...it is a possibility. We will never know...

Dear Shindig,

Sending you lots of strength and courage to deal with your tests and subsequent treatments. I was without insurance for a few years and suffered unspeakable tortures of pain. I agree with everyone at the absurdity of the focus on E.D. and through in male balding, too. I understand that it hurts their vanity and their chances to score...not that they could act on it unless they had the viagra or cialis. Seems cruel to say but they are not hurting. I would get in the back of the treatment line in deference to many conditions that are truly horrible and debilitating. But balding and worn out weenies are not a couple of them.

I think it's disgusting that a medical professional told you to go home and see if it went away on it's own. Bring stinkbombs for special appointments like that.

I'm still in that "what is this really coming from?!" stage. And hoping it's the possible cracked tooth aggravating it all; since I'm having it either crowned or root canaled this coming week (depending what we find after the huge old metal filling is removed). The pain, although seemingly everywhere, still points\triggers at that area.

As for the ED and baldness drugs, those are marketed almost as "prescription recreational drugs" and are big profit due to their huge volume of sales (ergo all the advertising). Those make a fortune for the drug companies. We (those of us taking what TN can require) however, don't make them much if anything.

I for one am GLAD the drug companies can make money from drugs not so desperately needed, I think it allows them to provide\create the drugs that help people dealing with pain and serious illness (that often are very low volume). Other than rules and regulations that might entice them to do some good along with making billions, what would make them want to come up with drugs that might help rare issues (or even get the ok to use one of their current meds for such an issue)? Maybe it's one of the ways otherwise healthy people can help fund research etc. If so, I say let em advertise LOL (I often get a laugh out of those ads anyway, only because they're usually hokie).

Drug companies don't exist to try to help us, they exist for profit via helping millions with their products, not a few thousand or hundred thousand. Think of it this way, every time someone buys one of those "recreational" type of medications, they're donating to help those few of us that could use medications these companies can create or have that can help if approved for such a use (those drugs are far from cheap or given away and both types came from trying to help a legitimate health issue).

Frankly, as far as TN goes, I don't think there will ever be a drug that cures it, only treats it's symptoms. I'm fairly sure only surgery will ever be able to actually cure it, or treat it most effectively.

When I first looked into the type of pain I was having right after the dental work and came across TN as a possible reason, I hoped for a serious bone infection or even a tumor to be the cause. My guess is I probably have TN but it's being aggravated by a dental issue since Hydrocodone, Tegretol, Tramadol, Neurontin etc aren't really helping much with the pain attacks (only lowering intensity a bit when all are taken). I haven't had an MRI, only a contrast dye CT so far that showed nothing really. So I can understand how wanting to know the exact cause can feel.

I hope I didn't offend anyone, just to point out a positive regarding the ads and also how I think any of us must feel frustrated to the point of feeling crazy, not knowing what's causing so much pain. After all, logically, wouldn't anyone expect something causing so much pain to show up big and bold on some kind of x-ray or scan right away?