Aa
Long road to diagnosis
I've spent 10 months since my symptoms started, just trying to get the pain to stop.
My general physician wasted months thinking it was "hemicranial continua" and other migraine type problems for my extreme facial pain.
I was then convinced a wisdom tooth had moved up into the top of my mouth back there, pushing on the nerves. I went to the dentist for an xray, who referred me to an orthodontist with a bigger xray, which found nothing.
The orthodontist referred me to a neurologist.
First meeting with neurologist he ordered an MRI, it took 1 week to have the MRI, then 2 weeks for the follow up. At the follow up he pulled up an image from the MRI with a white jelly bean lesion in my cavernous sinus smothering my trigeminal nerve. Ordered a lumbar puncture, had to wait 3 weeks for the results of it. It came back clear, with 1 auto-immune marker being positive.
He said it was in line with a diagnosis of Tolosa Hunt Syndrome(extremely rare condition), started me on steroids, and assured me my pain should start going away in days, it's been a full week now and it's as bad as ever.
My entire experience has been extreme pain from the time I wake up, to the time I go to sleep, it's become debilitating over the past 6 weeks, with new and worse symptoms. Right now I'm on a "wait and see" course with steroids, follow up MRI in a month to see if it's going away, but it's not going away and hasn't improved in the slightest.
The neurologist said if it wasn't clearing up within 1-2 weeks then to call back because it would be considered a tumor, and the only way to figure out what kind is to biopsy, but it's in the worst location. I called on Friday but he was out of the office. Maybe he'll call me back tomorrow.
From what I've read, other people diagnosed with THS that didn't clear up from steroids was a cavernous sinus meningioma, a good type of tumor (slow growing, benign) but in a very dangerous place to get to...mine has slowly gotten worse over 10 months of the first symptoms, so I think it's probable....the worst part is it's effects on my optic nerve, I was dealing with the trigeminal neuralgia, but with my vision problems, my real passions in life are unattainable as of a few weeks ago. (programming, game development)
My eye has been giving me grief for 3 months, the doctor knows, but over the past 3-4 weeks it's become too painful to even think while reading/concentrating as my eye gives stabbing pain deep in my face if I move it in any direction. Driving is really tough now as well, looking to the different mirrors, and my left eye is blurry/double vision. Recently I find myself falling, or catching myself walking into doorways more often than through them.
I take neurontin for the nerve stuff, but it's not helping much anymore. Steroids made me feel a little better initially, but I think because I had way more energy than ever rather than any removal of pain. The pain has been very precise and always there.
My general physician wasted months thinking it was "hemicranial continua" and other migraine type problems for my extreme facial pain.
I was then convinced a wisdom tooth had moved up into the top of my mouth back there, pushing on the nerves. I went to the dentist for an xray, who referred me to an orthodontist with a bigger xray, which found nothing.
The orthodontist referred me to a neurologist.
First meeting with neurologist he ordered an MRI, it took 1 week to have the MRI, then 2 weeks for the follow up. At the follow up he pulled up an image from the MRI with a white jelly bean lesion in my cavernous sinus smothering my trigeminal nerve. Ordered a lumbar puncture, had to wait 3 weeks for the results of it. It came back clear, with 1 auto-immune marker being positive.
He said it was in line with a diagnosis of Tolosa Hunt Syndrome(extremely rare condition), started me on steroids, and assured me my pain should start going away in days, it's been a full week now and it's as bad as ever.
My entire experience has been extreme pain from the time I wake up, to the time I go to sleep, it's become debilitating over the past 6 weeks, with new and worse symptoms. Right now I'm on a "wait and see" course with steroids, follow up MRI in a month to see if it's going away, but it's not going away and hasn't improved in the slightest.
The neurologist said if it wasn't clearing up within 1-2 weeks then to call back because it would be considered a tumor, and the only way to figure out what kind is to biopsy, but it's in the worst location. I called on Friday but he was out of the office. Maybe he'll call me back tomorrow.
From what I've read, other people diagnosed with THS that didn't clear up from steroids was a cavernous sinus meningioma, a good type of tumor (slow growing, benign) but in a very dangerous place to get to...mine has slowly gotten worse over 10 months of the first symptoms, so I think it's probable....the worst part is it's effects on my optic nerve, I was dealing with the trigeminal neuralgia, but with my vision problems, my real passions in life are unattainable as of a few weeks ago. (programming, game development)
My eye has been giving me grief for 3 months, the doctor knows, but over the past 3-4 weeks it's become too painful to even think while reading/concentrating as my eye gives stabbing pain deep in my face if I move it in any direction. Driving is really tough now as well, looking to the different mirrors, and my left eye is blurry/double vision. Recently I find myself falling, or catching myself walking into doorways more often than through them.
I take neurontin for the nerve stuff, but it's not helping much anymore. Steroids made me feel a little better initially, but I think because I had way more energy than ever rather than any removal of pain. The pain has been very precise and always there.
Find a GP that is not a complete idiot... you need a few good docs on your side and at least one that will order tests and give you meds that you need. I had for a long time an iffy one - but at least he was resigned to just doing what I wanted as I was way past his skill level.
If you have your records, shop your own stuff around... I got my own fax at home (since they are now kinda cheap) to send stuff around. You have to be relentless - the docs may lose things in a pile!
60mg is a huge dose and while it can be helpful for some things - that is for sure going to create some steroid issues - I used to have Cushing's and it is NO FUN.
I sadly learned by experience! I don't want anyone to be like me - so I figure it is best to gather up info. When you have a complex situation and are out of a neat box, it gets really hard to find decent docs and answers that help - there are often several factors at work.
I hope not to see you in the news. I used to want to kick them hard when they gave me inane answers... try acupuncture if you can afford it - they just put out a paper how it helps chronic pain - it is the only thing that has really helped me without making me even more stupid.
If you have your records, shop your own stuff around... I got my own fax at home (since they are now kinda cheap) to send stuff around. You have to be relentless - the docs may lose things in a pile!
60mg is a huge dose and while it can be helpful for some things - that is for sure going to create some steroid issues - I used to have Cushing's and it is NO FUN.
I sadly learned by experience! I don't want anyone to be like me - so I figure it is best to gather up info. When you have a complex situation and are out of a neat box, it gets really hard to find decent docs and answers that help - there are often several factors at work.
I hope not to see you in the news. I used to want to kick them hard when they gave me inane answers... try acupuncture if you can afford it - they just put out a paper how it helps chronic pain - it is the only thing that has really helped me without making me even more stupid.
No my GP is a complete idiot. Wasted 4 months of my time, when I told him my MRI showed a lesion he recommended I see an ear, eye, nose doctor rather than a neurologist. I think he confused the cavernous sinus with your sinus....I wrote him back yesterday to tell him my diagnosis from Swedish (Tolosa hunt syndrome) and he was like That's 1 in a million!
I asked him for a recommendation to the BEST University of WA neurologist for THS or CS issues and he said he's going to shop it around, but said it'll probably be a month before I can get anywhere.
I appreciate your responses, you seem more knowledgeable than every other forum I've found.
I'm 28 years old and supposed to take 60mg prednisone indefinitely. My symptoms haven't improved at all from it, my neurontin is about half as effective as it was a month ago, nobody knows what it is and I just keep waiting, waiting, waiting. You may see me in the news if I knife my doctors leg and ask him to tell me on a scale of 1-10 how much it hurts.
I asked him for a recommendation to the BEST University of WA neurologist for THS or CS issues and he said he's going to shop it around, but said it'll probably be a month before I can get anywhere.
I appreciate your responses, you seem more knowledgeable than every other forum I've found.
I'm 28 years old and supposed to take 60mg prednisone indefinitely. My symptoms haven't improved at all from it, my neurontin is about half as effective as it was a month ago, nobody knows what it is and I just keep waiting, waiting, waiting. You may see me in the news if I knife my doctors leg and ask him to tell me on a scale of 1-10 how much it hurts.
ER is for urgent care - they don't diagnose and they cannot take the time to diagnose complex issues. They simply are not set up for normal care - they are set up for urgent care.
100mg steroids pred is HUGE. 60mg is HUGE. A normal replacement dose - what the body uses is 5mg just for reference - so you will have to taper down off that 60mg. The docs have essentially given you steroid induced Cushing's and/or adrenal insufficiency which means no immune system among other things - people vary.
Been there with the co-pays. I would try to find a pituitary center - only because they normally deal with lesions in that area so they could at least guide you a bit better - and they know the eye docs and surgeons and radiologists who treat this stuff. Hint - proton beam is what I would go for as the newest type with the least side effects. They usually push what they have which may or may not be the best.
The canvernous sinus is inoperable - I cannot imagine a biopsy there in that case... it is full of nerves and blood vessels and too dangerous to much around in.
I would get meds for the nausea - like zofran or phenergan and get a plan to manage the pain (I use acupuncture as the meds really got to me - chronic pain really bites @$$!!!). Do you have a decent GP that will get you at least basic stuff that you need?
100mg steroids pred is HUGE. 60mg is HUGE. A normal replacement dose - what the body uses is 5mg just for reference - so you will have to taper down off that 60mg. The docs have essentially given you steroid induced Cushing's and/or adrenal insufficiency which means no immune system among other things - people vary.
Been there with the co-pays. I would try to find a pituitary center - only because they normally deal with lesions in that area so they could at least guide you a bit better - and they know the eye docs and surgeons and radiologists who treat this stuff. Hint - proton beam is what I would go for as the newest type with the least side effects. They usually push what they have which may or may not be the best.
The canvernous sinus is inoperable - I cannot imagine a biopsy there in that case... it is full of nerves and blood vessels and too dangerous to much around in.
I would get meds for the nausea - like zofran or phenergan and get a plan to manage the pain (I use acupuncture as the meds really got to me - chronic pain really bites @$$!!!). Do you have a decent GP that will get you at least basic stuff that you need?
rumpled....
What do you think about the ER? I don't think I can make it another week. I called my doctor, nurse called me back, is going to talk to the doctor and call me tomorrow, but it's getting worse.
My fear of the ER is not just cost, but what they do to you when you're there. I've already had an MRI, Lumbar puncture, every blood test possible, within the past 2 months, would they reference that or poke me anew? I'm not doing another lumbar puncture, ever again, I will fight my way out of it if I have to.
So assuming they reference my existing results (I'll go to the ER where I had the tests done), what are they going to do that my regular neuro won't do? Run it by more faces? Schedule a biopsy on the spot? I can't imagine what an "emergency" biopsy would mount to, when I can hold off another week if I knew it was coming up, but I cannot continue with the pain I'm currently feeling.
I can't eat (even on steroids, I had huge appetite last week), am nauseous, everything is worse. Deep ear pain, vertigo, deep eye pain, face pain, unrelenting headaches and migraines(various types), burning nostril, list goes on....don't know what to do, waiting until I talk to the nurse again after she talks to the doctor. But I don't think I can even make it to get a consultation from someone else before I have to go to the ER.
What do you think about the ER? I don't think I can make it another week. I called my doctor, nurse called me back, is going to talk to the doctor and call me tomorrow, but it's getting worse.
My fear of the ER is not just cost, but what they do to you when you're there. I've already had an MRI, Lumbar puncture, every blood test possible, within the past 2 months, would they reference that or poke me anew? I'm not doing another lumbar puncture, ever again, I will fight my way out of it if I have to.
So assuming they reference my existing results (I'll go to the ER where I had the tests done), what are they going to do that my regular neuro won't do? Run it by more faces? Schedule a biopsy on the spot? I can't imagine what an "emergency" biopsy would mount to, when I can hold off another week if I knew it was coming up, but I cannot continue with the pain I'm currently feeling.
I can't eat (even on steroids, I had huge appetite last week), am nauseous, everything is worse. Deep ear pain, vertigo, deep eye pain, face pain, unrelenting headaches and migraines(various types), burning nostril, list goes on....don't know what to do, waiting until I talk to the nurse again after she talks to the doctor. But I don't think I can even make it to get a consultation from someone else before I have to go to the ER.
Thank you I probably should at least meet with a second opinion. I was dealing with everything up until the eye problems. It pretty much ruins my life completely. (full time student computer programmer can't even think straight when reading documentation as of 4 weeks ago) I have painful ophthalmoplegia, partial ptosis, trigeminal neuralgia, among other things. It's ruining my life.
The co-pays just to see a doctor are killing me, with insurance, $40 doesn't sound like a lot until it takes 20 visits to find out you need further opinions. At the same time your employment options have dried up. Co pay for consultation, co pay for follow up just to hear the results and schedule more visits that take more co pays. I was vacuuming rat poop out of a crawl space last week to make money.
I was on 100mg prednisone which is high for the first few days then dropped to 60mg for the next 3 months but it's not improving at all. Only effect is I have more energy and a large appetite. The doctor is "ruling out" Tolosa Hunt Syndrome with this treatment and said if it doesn't improve quickly then the lesion is a tumor.
From what I've read, THS (extremely rare) who don't clear up right away tend to have a cavernous sinus meningioma, good type of tumor to have(slow growing, benign), but worst location.....considering mine has been progressing slowly over 10 months since the symptoms became noticeable I think that's probable at this point.....
Now I'm trying to figure out everything, if I un-enroll from school(final year) I think my student loans will become due, or I'm afraid I won't get back in time to complete my degree and I only have 7 classes left. If I can't figure out my eye I can't even use the degree anyway. I felt so empowered being able to program video games and interactive media, I will die if I can't continue.
Thanks, I hadn't thought of a neurologist specializing in eyes. They'd probably at least understand my pain better and maybe be able to get it to a manageable level. I don't want narcotics, but I would love a topical cream to rub around my eye/cheek, at least to try it, but have to wait for the next visit to beg for it.
The co-pays just to see a doctor are killing me, with insurance, $40 doesn't sound like a lot until it takes 20 visits to find out you need further opinions. At the same time your employment options have dried up. Co pay for consultation, co pay for follow up just to hear the results and schedule more visits that take more co pays. I was vacuuming rat poop out of a crawl space last week to make money.
I was on 100mg prednisone which is high for the first few days then dropped to 60mg for the next 3 months but it's not improving at all. Only effect is I have more energy and a large appetite. The doctor is "ruling out" Tolosa Hunt Syndrome with this treatment and said if it doesn't improve quickly then the lesion is a tumor.
From what I've read, THS (extremely rare) who don't clear up right away tend to have a cavernous sinus meningioma, good type of tumor to have(slow growing, benign), but worst location.....considering mine has been progressing slowly over 10 months since the symptoms became noticeable I think that's probable at this point.....
Now I'm trying to figure out everything, if I un-enroll from school(final year) I think my student loans will become due, or I'm afraid I won't get back in time to complete my degree and I only have 7 classes left. If I can't figure out my eye I can't even use the degree anyway. I felt so empowered being able to program video games and interactive media, I will die if I can't continue.
Thanks, I hadn't thought of a neurologist specializing in eyes. They'd probably at least understand my pain better and maybe be able to get it to a manageable level. I don't want narcotics, but I would love a topical cream to rub around my eye/cheek, at least to try it, but have to wait for the next visit to beg for it.
The canvernous sinus is general seen as inoperable - I only know this as sometimes pituitary tumors grow there and it is pretty much a guarantee for radiation.
As for the eyes, I would find a neuro opthomalogist who can take a look and do the detailed testing that you may need - at least an eye MD but the neuro optho is preferable.
Steroids are not a good long term option - while the doc is thinking anti-inflammatory, the side effects are going to be an issue. As for neurontin, there are other meds in the class - they ALL have side effects it is just a matter of finding one that is more or less tolerable for you.
I would also do everything in your power to find a neuro and surgeon that has experience in the type of tumor you have - it being rare, make sure you have all your records and that you do all you have to do - even travel. There may be clinical trials (if you are up for that) and other options - so keep on looking.
As for the eyes, I would find a neuro opthomalogist who can take a look and do the detailed testing that you may need - at least an eye MD but the neuro optho is preferable.
Steroids are not a good long term option - while the doc is thinking anti-inflammatory, the side effects are going to be an issue. As for neurontin, there are other meds in the class - they ALL have side effects it is just a matter of finding one that is more or less tolerable for you.
I would also do everything in your power to find a neuro and surgeon that has experience in the type of tumor you have - it being rare, make sure you have all your records and that you do all you have to do - even travel. There may be clinical trials (if you are up for that) and other options - so keep on looking.
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