This is a blog I've created so friends and family can follow along with my progress and as a resource for others considering a Total Joint Replacement surgery for TMJ.
My name is Sarah Sweet. I'm 30 years old and married with a 1 1/2 year old son. I'm about 4 months away from having my TJR surgery. Let me tell you how I got here.
Over 10 years ago I started experiencing pain in my jaw, my face, my neck and shoulders, and constant headaches. I also had my jaw lock shut for hours at a time and my jaw popped with a horrible loud noise. As time went on, these symptoms only intensified until I sought medical help. My dentist at the time referred me to a TMJ specialist who immediately started me on an upper and lower orthotic appliance. This only worsened my condition. I found another TMJ specialist (Dr. Rod Willey) who took over my care. He first explained to me the different theories of treating TMJ and the different TMJ problems you could have.
Dr. Wiley told me some dr's believe to correct the TMJ, you must force your jaw bones into the ideal, skeletal position. Others, like him, believed you needed to see where your facial muscles wanted to go and then edge the jaw into this position so the muscles were no longer straining to get where they wanted to be. His technique is what worked for me. He started me on TENS treatment (running electrical impulses through the face) and gave me a new orthotic. I was only allowed to speak 3 hours a day, so my job at a bank call center ended quickly. I saw a chiropractor 2 times a week. After 6 months of treatment I felt a lot better, but now I needed to move my teeth so they could take over the job of the orthotic splint (because you can't live in a splint forever without constant maintenance). Dr. Wiley then passed me onto Orthodontics.
I wore braces for 3 years to realign my bite. Due to the constant movement of teeth and instability, a lot of pain returned during this process. The orthodontist decided I should see an Oral surgeon because the braces "just weren't going to get me there." BTW...I really hate orthodontists.
I started seeing Dr. Michael Barbick (oral surgeon). He decided I needed an orthognathic surgery to move my bottom jaw forward. He completed the surgery and I got my braces off about 4 months later. I felt pretty good for about a year. Little did I know the worst was yet to come.
Somewhere among this timeline I developed another chronic pain condition called Interstital Cystitis. This means my bladder is constantly inflamed for unknown reasons. They don't know what causes it and I tried a multitude of treatments for this too, but that's another story. Oddly, there have been studies conducted showing people with one chronic pain condition often getting another. There were many subjects found to have both IC and TMJ... theory being it's a haywire nerve system. Who knows.
Though the surgery resolved my jaw locking, much of the jaw popping, the pain returned with a vengeance. I started getting debilitating migraines. Not just headaches as I'd had before, but migraines! This also gradually worsened to where I was getting a migraine 3-4 times a week and sometimes lasting up to 3 days each. I had horrible nausea, dizziness, vertigo, sound sensitivity, light sensitivity, visual auras that blurred and spotted my sight, and pounding, agonizing pain in my temples and base of my skull. The jaw pain returned along with neck and upper back pain. My jaw rarely popped (though I could make it pop if I tried), I constantly heard a grinding noise when I ate and talked.
I couldn't understand where the migraines came from as that had never happened to me before. I sought out a neurologist who did a brain MRI (all normal) and started me on Topamax (or the slang Dope-a-max as it is known for scrambling your brain so you can hardly function). I also tried beta-blockers, antidepressants, and Botox injections for the migraines. The Topamax helped some but I could hardly function. I had trouble listening and understanding my coworkers when they spoke. Loud noises have me anxiety attacks. More than once I almost fell asleep at the wheel. I found it hard to exist out of bed. I was so drowsy all the time. I tried alternative therapies like vitamin supplements and acupuncture. Nothing helped and I ended up in the ER multiple times in unbearable pain. Nothing else made sense to me other than, it had to be related to my TMJ, which was also bothering me but kind of got ignored when pain in my head took over my body. My neurologist also gave up on me and told me just to go to the hospital every time I got a migraine. I needed help!
I sought out Dr. Duane Keller (who is amazing). He ordered a TMJ MRI and I got some very bad news. The discs in my TMJ joints were displaced, degenerative, and stuck to the top of the bone. In other words they were useless and all that grinding noise, was bone rubbing on bone. The bones were arthritic. He knew I would need surgery but he wanted to try all he could with me before that last final option. We tried splint therapy to no avail. A Total Joint Replacement surgery was where I was headed.
I started seeing Dr. Reza Movahed (oral surgeon) he confirmed the diagnosis. I would need my old joints cut out, replaced with metal ones, my lower jaw repositioned and my upper jaw cut away from my skull and moved forward. I was going to be the bionic woman alright. I will look something like this:
This was a terrifying surgery and I was already missing so much work. I wanted to give medications another try. My job was getting fed up with me and I gained a hostile work environment as my coworkers were very NOT understanding about my many absences and "special treatment." I decided to leave and seek out a new job where so could get a fresh start and not be "the sick girl" everyone hates. After 2 months at my new job they fired me because "though I had valuable skills, they were looking for someone with different job skills." A total excuse. They wanted to get out fast before they wouldn't be able to fire me for a medical condition. My pride took a huge blow. For those of you reading this with other invisible illnesses, you'll understand how when people can't SEE something physically wrong with you, they have little sympathy and understanding. I've lost friendships I treasured through all of this and it has truly destroyed my life. I have many things to be grateful for, don't get me wrong, but this illness took away my ability to work, keeps me from enjoying many social activities, strains my relationships, and keeps me from being the mom and wife I want to be.
After many discussions with my husband, we decided it was now or never and we scheduled the surgery. That also unfortunately meant getting braces back on which will probably be on for 2-3 years. I also started seeing a new neurologist and going to physical therapy for my jaw and neck.
It's 4 months away and going to be a long and difficult recovery. I will keep you all posted on my progress as I move along. Thanks for reading and for your support!
My name is Sarah Sweet. I'm 30 years old and married with a 1 1/2 year old son. I'm about 4 months away from having my TJR surgery. Let me tell you how I got here.
Over 10 years ago I started experiencing pain in my jaw, my face, my neck and shoulders, and constant headaches. I also had my jaw lock shut for hours at a time and my jaw popped with a horrible loud noise. As time went on, these symptoms only intensified until I sought medical help. My dentist at the time referred me to a TMJ specialist who immediately started me on an upper and lower orthotic appliance. This only worsened my condition. I found another TMJ specialist (Dr. Rod Willey) who took over my care. He first explained to me the different theories of treating TMJ and the different TMJ problems you could have.
Dr. Wiley told me some dr's believe to correct the TMJ, you must force your jaw bones into the ideal, skeletal position. Others, like him, believed you needed to see where your facial muscles wanted to go and then edge the jaw into this position so the muscles were no longer straining to get where they wanted to be. His technique is what worked for me. He started me on TENS treatment (running electrical impulses through the face) and gave me a new orthotic. I was only allowed to speak 3 hours a day, so my job at a bank call center ended quickly. I saw a chiropractor 2 times a week. After 6 months of treatment I felt a lot better, but now I needed to move my teeth so they could take over the job of the orthotic splint (because you can't live in a splint forever without constant maintenance). Dr. Wiley then passed me onto Orthodontics.
I wore braces for 3 years to realign my bite. Due to the constant movement of teeth and instability, a lot of pain returned during this process. The orthodontist decided I should see an Oral surgeon because the braces "just weren't going to get me there." BTW...I really hate orthodontists.
I started seeing Dr. Michael Barbick (oral surgeon). He decided I needed an orthognathic surgery to move my bottom jaw forward. He completed the surgery and I got my braces off about 4 months later. I felt pretty good for about a year. Little did I know the worst was yet to come.
Somewhere among this timeline I developed another chronic pain condition called Interstital Cystitis. This means my bladder is constantly inflamed for unknown reasons. They don't know what causes it and I tried a multitude of treatments for this too, but that's another story. Oddly, there have been studies conducted showing people with one chronic pain condition often getting another. There were many subjects found to have both IC and TMJ... theory being it's a haywire nerve system. Who knows.
Though the surgery resolved my jaw locking, much of the jaw popping, the pain returned with a vengeance. I started getting debilitating migraines. Not just headaches as I'd had before, but migraines! This also gradually worsened to where I was getting a migraine 3-4 times a week and sometimes lasting up to 3 days each. I had horrible nausea, dizziness, vertigo, sound sensitivity, light sensitivity, visual auras that blurred and spotted my sight, and pounding, agonizing pain in my temples and base of my skull. The jaw pain returned along with neck and upper back pain. My jaw rarely popped (though I could make it pop if I tried), I constantly heard a grinding noise when I ate and talked.
I couldn't understand where the migraines came from as that had never happened to me before. I sought out a neurologist who did a brain MRI (all normal) and started me on Topamax (or the slang Dope-a-max as it is known for scrambling your brain so you can hardly function). I also tried beta-blockers, antidepressants, and Botox injections for the migraines. The Topamax helped some but I could hardly function. I had trouble listening and understanding my coworkers when they spoke. Loud noises have me anxiety attacks. More than once I almost fell asleep at the wheel. I found it hard to exist out of bed. I was so drowsy all the time. I tried alternative therapies like vitamin supplements and acupuncture. Nothing helped and I ended up in the ER multiple times in unbearable pain. Nothing else made sense to me other than, it had to be related to my TMJ, which was also bothering me but kind of got ignored when pain in my head took over my body. My neurologist also gave up on me and told me just to go to the hospital every time I got a migraine. I needed help!
I sought out Dr. Duane Keller (who is amazing). He ordered a TMJ MRI and I got some very bad news. The discs in my TMJ joints were displaced, degenerative, and stuck to the top of the bone. In other words they were useless and all that grinding noise, was bone rubbing on bone. The bones were arthritic. He knew I would need surgery but he wanted to try all he could with me before that last final option. We tried splint therapy to no avail. A Total Joint Replacement surgery was where I was headed.
I started seeing Dr. Reza Movahed (oral surgeon) he confirmed the diagnosis. I would need my old joints cut out, replaced with metal ones, my lower jaw repositioned and my upper jaw cut away from my skull and moved forward. I was going to be the bionic woman alright. I will look something like this:
This was a terrifying surgery and I was already missing so much work. I wanted to give medications another try. My job was getting fed up with me and I gained a hostile work environment as my coworkers were very NOT understanding about my many absences and "special treatment." I decided to leave and seek out a new job where so could get a fresh start and not be "the sick girl" everyone hates. After 2 months at my new job they fired me because "though I had valuable skills, they were looking for someone with different job skills." A total excuse. They wanted to get out fast before they wouldn't be able to fire me for a medical condition. My pride took a huge blow. For those of you reading this with other invisible illnesses, you'll understand how when people can't SEE something physically wrong with you, they have little sympathy and understanding. I've lost friendships I treasured through all of this and it has truly destroyed my life. I have many things to be grateful for, don't get me wrong, but this illness took away my ability to work, keeps me from enjoying many social activities, strains my relationships, and keeps me from being the mom and wife I want to be.
After many discussions with my husband, we decided it was now or never and we scheduled the surgery. That also unfortunately meant getting braces back on which will probably be on for 2-3 years. I also started seeing a new neurologist and going to physical therapy for my jaw and neck.
It's 4 months away and going to be a long and difficult recovery. I will keep you all posted on my progress as I move along. Thanks for reading and for your support!
HI, just curious if you had your surgery yet and how post surgery life is going? I am scheduled to have a Left TMJ replacement next year and am really looking for good news or success stories. I'm scared to death to start this 1+ year journey towards the surgery. I am supposed to have 2 teeth removed later this week and then start my 2nd round of braces 2 weeks later followed by the surgery in about 15-18 months from starting my braces. Praying for some good news and relief.
ReplyDeleteI can’t express how thankful I am for your blog! I’ve been reading countless double jaw surgery blogs for the last couple years hoping it’s “close enough” to the Joint Replacement surgery il be getting this summer, then finally I stumbled onto yours!! Thank you so much! It’s helped tremendously with all of my questions, but as you can imagine I have a million more, would you kindly contact me through email so we can chat :) a.labelle@hotmail.com
ReplyDelete