My new adventure (ie where did I go this time?)
- Thread starter Acert93
- Start date
Dammit, Trigeminal Neuralgia. The ultimate douchebag of illnesses.
Basically harmless (regarding lasting damage and life expectancy), but the pain must be horrible.
I sincerely hope your operation goes well and has the desired effect.
My mother has suffered from it for years now, and has it somewhat under control at the moment with a mix of acupuncture and oxycodone. (But yeah, I remember the time she was on Carbamazepine. Nasty side effects.)
But it's a time bomb until oxycodone tolerance sets in. Sadly she's (still) too scared to undergo surgery, even something less invasive than NVD.
Basically harmless (regarding lasting damage and life expectancy), but the pain must be horrible.
I sincerely hope your operation goes well and has the desired effect.
My mother has suffered from it for years now, and has it somewhat under control at the moment with a mix of acupuncture and oxycodone. (But yeah, I remember the time she was on Carbamazepine. Nasty side effects.)
But it's a time bomb until oxycodone tolerance sets in. Sadly she's (still) too scared to undergo surgery, even something less invasive than NVD.
Time for an update. This morning I received a call from my neurosurgeon confirming my MVD for January 24th. My other surgery will shortly follow... other surgery you say? I guess I will rewind.
I have not been back on Carbamazepine (yay!) and had just random aches here and there all year. Pretty classic prodromal sensations (so called Pre-Trigeminal Neuralgia). I have kept out hope it was just a misdiagnosed phantom tooth ache.
During the interlude my PCP (great guy) was very patient and thought it was a good thing to continue pursuit of my dizziness, tinnitus, autophony (I can hear my eye move! and my voice and movements are really loud in my left ear). I had seen and ENT who said I simply had Eustachian Tube Dysfunction (EDT) and he said it would clear up when my allergies cleared up in a couple months but if not he would prescribe me Flonase (hint: my allergies had not been a problem for over a year since I started Flonase). My PCP and I decided that wasn't a very good diagnosis. I had been doing a lot of reading about TN and looking at my symptoms--I was kind of worried I had MS and the ear issues were just a lesion on another nerve. But my doctor really felt I had some type of comorbid issues. So I did a lot more reading (yay for people who publish medical journals online for free!) and discovered this really rare condition: Superior Canal Dehiscence Syndrome (or Superior Semi-Circular Canal Dehiscence). Some nice links here and here. The condition was first described as a distinct syndrome, related to a hole in the superior canal, by Dr. Minor at John Hopkins in 1998. Thole hole creates a 3rd window in the ear which allows sound and pressure to stimulate the canal incorrectly.
My neuro thought there was a chance I had tic convuslif (compression along multiple nerves) which was causing the pulsating tinnitus but he was very gracious to hear my whacky theory and thought it wasn't a bad idea to eliminate SCDS. A week and a thin cut CT scan of my temporal bone later revealed a massive hole! My symptoms started when we were moving over the Rockies and Cascades 3 years ago (although I have always had minor symptoms) so it is likely I had a thin bone that I broke while sneezing through the passes (I had a cold and have bad allergies). The good news is we discovered the hole and it can be fixed. The bad news? Another craniotomy. Sadly when I got TN my SCDS got REALLY bad due to the Carbamazepine raising my blood pressure. This all happened in May.
My neuro was very confident I had TN and due to my health, age, symptoms, and reaction to Carbamazepine felt the MVD was the best option was the best course. I was holding out hope I didn't have TN so I agreed when the pain came back I would have the surgery.
December 2nd at about 9pm I was talking to my wife and SMACK. Right in the tongue (!) 3 sharp electrical shocks. Each was only 1 second long and were all gone within 20 seconds but man alive OUCH. It was like a cross between being kicked in the face & kissing a large car battery in a pool. The next day I had the horrible aching pain come back. I think it was being exasperated by my braces (got those in November) so I took a Motrin to take away the aching teeth and when that pain subsided the deep ache in my cheek went away. In my mind this meant I had a tooth ache... the right answer is the aching teeth were acting as a TN trigger. December 18th I had 2 more shock as I was going to bed. The first was to my left upper lip and the next was the the upper left gums. I was half asleep (until they made me jump from bed!) so it is all foggy. I really want a reason to think this could be something else... but the irretractable pain from last year that was resolved by anti-convulsants, the aches that come and then dissappear, and now the shocks are all clear enough.
We want to get this stuff behind me and the sooner the nerve can be protected from the blood vessel the better off I will be. So I made the call this week and my date is January 24th. The SCDS repair will come shortly thereafter.
I am a little nervous and have a billion things to do but in many ways I am excited to kiss 2011 and TN/SCDS good bye. I wish I never knew ya'!
Overall I am doing great. Tired often, but doing good. Spent the last year just hanging out with the kids a lot. I have been on leave from school. I am looking at recouping for 8-12 weeks from the two surgeries. And we have a new baby coming at the beginning of April. So life is good!
I hope everyone has a happy new year and stellar 2012, I know I will
I have not been back on Carbamazepine (yay!) and had just random aches here and there all year. Pretty classic prodromal sensations (so called Pre-Trigeminal Neuralgia). I have kept out hope it was just a misdiagnosed phantom tooth ache.
During the interlude my PCP (great guy) was very patient and thought it was a good thing to continue pursuit of my dizziness, tinnitus, autophony (I can hear my eye move! and my voice and movements are really loud in my left ear). I had seen and ENT who said I simply had Eustachian Tube Dysfunction (EDT) and he said it would clear up when my allergies cleared up in a couple months but if not he would prescribe me Flonase (hint: my allergies had not been a problem for over a year since I started Flonase). My PCP and I decided that wasn't a very good diagnosis. I had been doing a lot of reading about TN and looking at my symptoms--I was kind of worried I had MS and the ear issues were just a lesion on another nerve. But my doctor really felt I had some type of comorbid issues. So I did a lot more reading (yay for people who publish medical journals online for free!) and discovered this really rare condition: Superior Canal Dehiscence Syndrome (or Superior Semi-Circular Canal Dehiscence). Some nice links here and here. The condition was first described as a distinct syndrome, related to a hole in the superior canal, by Dr. Minor at John Hopkins in 1998. Thole hole creates a 3rd window in the ear which allows sound and pressure to stimulate the canal incorrectly.
My neuro thought there was a chance I had tic convuslif (compression along multiple nerves) which was causing the pulsating tinnitus but he was very gracious to hear my whacky theory and thought it wasn't a bad idea to eliminate SCDS. A week and a thin cut CT scan of my temporal bone later revealed a massive hole! My symptoms started when we were moving over the Rockies and Cascades 3 years ago (although I have always had minor symptoms) so it is likely I had a thin bone that I broke while sneezing through the passes (I had a cold and have bad allergies). The good news is we discovered the hole and it can be fixed. The bad news? Another craniotomy. Sadly when I got TN my SCDS got REALLY bad due to the Carbamazepine raising my blood pressure. This all happened in May.
My neuro was very confident I had TN and due to my health, age, symptoms, and reaction to Carbamazepine felt the MVD was the best option was the best course. I was holding out hope I didn't have TN so I agreed when the pain came back I would have the surgery.
December 2nd at about 9pm I was talking to my wife and SMACK. Right in the tongue (!) 3 sharp electrical shocks. Each was only 1 second long and were all gone within 20 seconds but man alive OUCH. It was like a cross between being kicked in the face & kissing a large car battery in a pool. The next day I had the horrible aching pain come back. I think it was being exasperated by my braces (got those in November) so I took a Motrin to take away the aching teeth and when that pain subsided the deep ache in my cheek went away. In my mind this meant I had a tooth ache... the right answer is the aching teeth were acting as a TN trigger. December 18th I had 2 more shock as I was going to bed. The first was to my left upper lip and the next was the the upper left gums. I was half asleep (until they made me jump from bed!) so it is all foggy. I really want a reason to think this could be something else... but the irretractable pain from last year that was resolved by anti-convulsants, the aches that come and then dissappear, and now the shocks are all clear enough.
We want to get this stuff behind me and the sooner the nerve can be protected from the blood vessel the better off I will be. So I made the call this week and my date is January 24th. The SCDS repair will come shortly thereafter.
I am a little nervous and have a billion things to do but in many ways I am excited to kiss 2011 and TN/SCDS good bye. I wish I never knew ya'!
Overall I am doing great. Tired often, but doing good. Spent the last year just hanging out with the kids a lot. I have been on leave from school. I am looking at recouping for 8-12 weeks from the two surgeries. And we have a new baby coming at the beginning of April. So life is good!
I hope everyone has a happy new year and stellar 2012, I know I will
Thanks slider. Those are walls of text so the short version:
- In 2008 I started to hear my eye move, my voice got loud, I would get dizzy when changing positions, my ear always felt full, etc. Dr. thought I had allergies.
- In late 2010 I got the worst toothache ever. Turned out I had a blood vessel in my brain stem compressing the large nerve that provides sensation to your face. Went on nasty epileptic meds, pain went away. Decided to wait until the pain returned to go forward with the recommended surgery.
- In the middle of 2011 it was discovered that all the funky ear stuff was due to breaking a thin bone in my cranium between my ear canals and my brain. The only way to fix this is to open up your head and paste over the hole.
- December 2011: Pain returned, gonna go get patched up. Literally
It just seems crazy that you're the artist formerly known as yourself. Actually that kinda DOES make sense.
Anyway I'm glad to hear you're getting better and I'll make it my Christmas wish this year that you have a healthy and happy 2012!
Anyway I'm glad to hear you're getting better and I'll make it my Christmas wish this year that you have a healthy and happy 2012!
Last edited by a moderator:
Once upon a time, staff had to use their real names, then some were abused by fanbois or had other issues going on so handles were returned. That's also why I edited the name in your post.
Acert93, I wish your situation improves. Hopefully it's fully resolved with the upcoming procedure. No one, especially not you and your family, should ever have to endure so much.
Heres to looking forward to 2012 with great improvements!
DuckThor Evil
Legend
I wish everything goes well with the operations and that you can start focusing on more pleasant things after that. congrats on the upcoming addition to the family!
Thanks slider. Those are walls of text so the short version:
- In 2008 I started to hear my eye move, my voice got loud, I would get dizzy when changing positions, my ear always felt full, etc. Dr. thought I had allergies.
- In late 2010 I got the worst toothache ever. Turned out I had a blood vessel in my brain stem compressing the large nerve that provides sensation to your face. Went on nasty epileptic meds, pain went away. Decided to wait until the pain returned to go forward with the recommended surgery.
- In the middle of 2011 it was discovered that all the funky ear stuff was due to breaking a thin bone in my cranium between my ear canals and my brain. The only way to fix this is to open up your head and paste over the hole.
- December 2011: Pain returned, gonna go get patched up. Literally
Haha, I did read them; it'd be rude not to. My "not comperhending" comment was more about the weight of your posts. I guess it ties into that "life is fragile" comment I made before.
Anyway man, my thoughts, whilst not drunk, are with you.
Cheers.
My 2nd surgery is the 16th of Feb. With about 2 weeks away I am kind of nervous... am I really this nuts? Don't answer that
I am posting these links for my use for later but I think some here may find them interesting. A lot of people I know in real life have no clue I have been sick. I have been collecting some links for my wife so she can share with people as to explain my conditions.
Overview of Trigeminal Neuralgia and Microvascular Decompression
http://youtu.be/wYpWgeC3K-s
ABC on Trigeminal Neuralgia (the top picture becomes a video, click to play)
http://abcnews.go.com/Health/eliminating-pain-piece-felt-painkillers/story?id=14666567
20/20 on Superior Canal Dehiscence Syndrome
http://youtu.be/YkGsiyJyuRI
And videos I WON'T allow her to share, but very cool none the less, are about the surgery. Ok, they are cool except I get squirmish knowing I will be doing it. I love blood and guts, long ago I had wanted to be a surgeon and I really enjoyed working in the ED and surgical departments, but there is something about someone opening my head (no where else, just my head) that makes me... squirm. Seeing how delicate and small all those little vessels are and how just touching the auditory of facial nerve can cause big issues... !
Narrated Microvascular Decompression Video of Real Patient
http://youtu.be/C0G4NUwQIRQ
http://youtu.be/x2RoGxfkOb4
Enjoy! I am trying to have a good sense of humor about all of this. The surgeries are, on a scale of 1 to 10 for brain surgeries 10 being the most dangerous, 1s. It really isn't that bad. being out of work for 10-12 weeks isn't cool though, but then again waking up last night feeling like I was spinning violently in bed (vertigo) isn't fun either. Or the other night where I opened my eyes and my left eye was bouncing like a basket ball hahaha SCDS is such a screwy condition.
Then again when I introduce myself, "Hi, my name is Joshua, I have a hole in my head" everyone who knows me says, "Duh, tell us something we DON'T know!" My friends didn't need a CT scan to confirm the hole My theory is my brain tried to run away through the SCD hole and when that failed it resorted to self strangulation (TN).
Which reminds me, the nurse in the pre-op interview said, "I don't mean to be rude but I would really like to ask this: do you have significant head trauma?" She was quite stumped on how I could have two rare conditions on the same side of my head. The only appropriate response was, "I think my mother dropped me as a child."
I am posting these links for my use for later but I think some here may find them interesting. A lot of people I know in real life have no clue I have been sick. I have been collecting some links for my wife so she can share with people as to explain my conditions.
Overview of Trigeminal Neuralgia and Microvascular Decompression
http://youtu.be/wYpWgeC3K-s
ABC on Trigeminal Neuralgia (the top picture becomes a video, click to play)
http://abcnews.go.com/Health/eliminating-pain-piece-felt-painkillers/story?id=14666567
20/20 on Superior Canal Dehiscence Syndrome
http://youtu.be/YkGsiyJyuRI
And videos I WON'T allow her to share, but very cool none the less, are about the surgery. Ok, they are cool except I get squirmish knowing I will be doing it. I love blood and guts, long ago I had wanted to be a surgeon and I really enjoyed working in the ED and surgical departments, but there is something about someone opening my head (no where else, just my head) that makes me... squirm. Seeing how delicate and small all those little vessels are and how just touching the auditory of facial nerve can cause big issues... !
Narrated Microvascular Decompression Video of Real Patient
http://youtu.be/C0G4NUwQIRQ
http://youtu.be/x2RoGxfkOb4
Enjoy!
I am trying to have a good sense of humor about all of this. The surgeries are, on a scale of 1 to 10 for brain surgeries 10 being the most dangerous, 1s. It really isn't that bad. being out of work for 10-12 weeks isn't cool though, but then again waking up last night feeling like I was spinning violently in bed (vertigo) isn't fun either. Or the other night where I opened my eyes and my left eye was bouncing like a basket ball hahaha SCDS is such a screwy condition.Then again when I introduce myself, "Hi, my name is Joshua, I have a hole in my head" everyone who knows me says, "Duh, tell us something we DON'T know!" My friends didn't need a CT scan to confirm the hole
My theory is my brain tried to run away through the SCD hole and when that failed it resorted to self strangulation (TN).Which reminds me, the nurse in the pre-op interview said, "I don't mean to be rude but I would really like to ask this: do you have significant head trauma?" She was quite stumped on how I could have two rare conditions on the same side of my head. The only appropriate response was, "I think my mother dropped me as a child."
Good luck man , I will keep you in my thoughts.
My gf is going through some stuff , constant pain in her neck , one of the nodes will swell up , we keep getting told that nothing is wrong but the pain still stays. She doesn't want to do more tests but i keep pushing her. ITs best to find out whats going on then to let her stay in pain .
We've found out over the last 2 years (we've been dating 2 and a half years) that she is alergic to
Dairy
Eggs
Orange
Apples
Once she started avoiding these she felt much much better , however its still all there.
My gf is going through some stuff , constant pain in her neck , one of the nodes will swell up , we keep getting told that nothing is wrong but the pain still stays. She doesn't want to do more tests but i keep pushing her. ITs best to find out whats going on then to let her stay in pain .
We've found out over the last 2 years (we've been dating 2 and a half years) that she is alergic to
Dairy
Eggs
Orange
Apples
Once she started avoiding these she felt much much better , however its still all there.
T-minus 12 hours Thanks for all the well wishes and kindness guys. Over the years quite a few of you I have had the privilege of spending some quality gaming time with. Faaaar too many to name (if you have seen me nibbling away at your leaderboard scores in Trials, Fruit Ninja, Forza 4, etc you know I count you among my gaming friends! Or enemies... or frenemies... whatever) An extra tip of the hat to Timber and NavNuc for their above the call of duty service and sacrifice and Al, NRP, Robert, Scott, Brit, Hot Chick, and the rest of the Halo crew for forcing me to get bionic implants ::cough:: and enjoy console gaming. There are too many great people here to name (I almost forgot someone above so I KNOW I am missing others) but for every name above there are 5 other folks here I have greatly enjoyed over the years. I am gonna be fine but it is nice to take a moment to reflect -- you guys are by far the best online tech community I know. Here is to some awesome gaming in 2012... after I finish my surgeries... and my thesis Maybe I should just call this gen a wash and see y'all on the other side of next gen haha Thanks guys and I will let everyone know how things are going when I get back on my feet. No promises when that will be as I don't know how my SCDS will be like after the first surgery as fatigue really makes me extra sick. My wife will have some updates on her website though if anyone is interested.
Again, thanks everyone
Thanks for all the well wishes and kindness guys. Over the years quite a few of you I have had the privilege of spending some quality gaming time with. Faaaar too many to name (if you have seen me nibbling away at your leaderboard scores in Trials, Fruit Ninja, Forza 4, etc you know I count you among my gaming friends! Or enemies... or frenemies... whatever) An extra tip of the hat to Timber and NavNuc for their above the call of duty service and sacrifice and Al, NRP, Robert, Scott, Brit, Hot Chick, and the rest of the Halo crew for forcing me to get bionic implants ::cough:: and enjoy console gaming. There are too many great people here to name (I almost forgot someone above so I KNOW I am missing others) but for every name above there are 5 other folks here I have greatly enjoyed over the years. I am gonna be fine but it is nice to take a moment to reflect -- you guys are by far the best online tech community I know. Here is to some awesome gaming in 2012... after I finish my surgeries... and my thesis Maybe I should just call this gen a wash and see y'all on the other side of next gen haha Thanks guys and I will let everyone know how things are going when I get back on my feet. No promises when that will be as I don't know how my SCDS will be like after the first surgery as fatigue really makes me extra sick. My wife will have some updates on her website though if anyone is interested.Again, thanks everyone
