For those who are interested, I thought i'd post the medical list of symptoms associated with TMD. While there can be more than are on this list, and while each patient doesn't have all of these, I thought this could show just how complex of an issue it can be. I cannot believe reading it just how many symptoms I have. As my pain increases, the symptoms are becoming much more severe and the list is growing.
The Kinnie-Funt Visual Index of Head, Neck and Facial Pain and TMJ Dysfuction:
Eye Pain and Eye Problems:
-eye pain above, below, behind
- bloodshot eyes
- blurring of vision
- bulging appearance
- pressure behind the eyes
- light sensitivity
- watering of the eyes
- drooping of the eye lid
Head Pain, Headache Problems, Facial Pain:
- forehead pain
- temporal pain
- "migraine" type headache
- "cluster-type" headache
- sinus headache under the eyes
- posterior headaches, back of head, with or without shooting pains
- hair and/or scalp painful to touch
Mouth, Face, Cheek, and Chin Problems:
- discomfort or pain to any of these areas
- limited opening- inability to open the jaw smoothly or evenly
- jaw deviates to one side when opening
- inability to "find bite" with teeth
Teeth and Gum Problems:
- clenching or grinding at night
- looseness and or soreness of back teeth
- tooth pain
Jaw and Jaw Joint Problems:
- clicking, popping jaw joints
- grating sounds
- jaw locking opened or closed
- pain in cheek muscles
- uncontrollable jaw or tongue movements
Ear Pain, Ear Problems, and Postural Imbalances:
- hissing, buzzing, ringing, or roaring sounds
- diminished hearing
- ear pain without infection
- clogged, stuffy, "itchy" ears, feeling of fullness
- balance problems, "vertigo", dizziness, or disequilibrium
Throat Problems:
- swallowing difficulties
- tightness of throat
- sore throat without infection
- voice fluctuations
- laryngitis
- frequent coughing or constant clearing of throat
- feeling of foreign object in throat
- tongue pain- salivation (intense)
- pain of the hard palate in the mouth
Neck and Shoulder Problems:
- lack of mobility
- reduced range of movement
- stiffness
- neck pain
- tired, sore neck muscles
- shoulder aches
- back pain upper and lower
- arm and finger tingling, numbness and or pain
Wednesday, January 20, 2010
Tuesday, January 19, 2010
Emergency Arthrocentesis
After my last post, I ended up spending that monday night in the ER trying to get pain under control. Unfortunately, the rest of the week did not get any better. At my appointment on Wednesday at Hopkins, the doctor decided I needed arthrocentesis asap. My pain was uncontrollable and nothing else seemed to work.
I stayed overnight in Baltimore and went to his private practice the next day. We did the procedure under general on both joints. For those who do not know, arthrocentesis is done with two large needles, one pushing fluids and the other draining. During this procedure they are able to clean out the joints and inject cortisone. My doctor said it is also a good way to feel around and get a better idea of how damaged the joints are. It takes about 20 minutes per joint.
We discovered during this procedure my left joint is moderately damaged; they are not too concerned about it compared to the right side. The right is severely damaged, much more so than he had originally thought. He went ahead and made a mold for a mouthpiece during the procedure because I have trouble opening my jaw far enough when awake. The doctor now feels surgery is definitely in my near future, possibly as soon as 6 weeks away if insurance cooperates.
I have not been recovering as well as I had hoped from the procedure. The point of arthrocentesis is to relieve pain, but i'm still struggling significantly. Currently i'm taking at least 1 narcotic pain reliever a day, but hope to stop this soon. I'd rather stick with muscle relaxants and high dose Ibprofen if possible. While some pain from prior to the procedure is a little less, there is some new pain. I'm still very, very high on my pain scale.
I now have a new prescription for physical therapy, solely focused on my jaw. I'm my PT's first TMJ patient and he is excited to try some new things. I wouldn't want to go to anyone else even if they had experience; i've been with him for almost 8 months now and am comfortable where i'm at. I think we'll both learn something along this journey.
So, that is my update. It has been a very tough week but i'm hanging in there. Please pray i'm able to keep up with work as I wait for surgery. The pain is getting tougher to deal with each day that passes. My next appointment with the oral surgeon won't be until the insurance approves the mouthpiece and then it is made. It could be another two weeks and I don't know how i'll make it that long. Pray it goes fast.
I stayed overnight in Baltimore and went to his private practice the next day. We did the procedure under general on both joints. For those who do not know, arthrocentesis is done with two large needles, one pushing fluids and the other draining. During this procedure they are able to clean out the joints and inject cortisone. My doctor said it is also a good way to feel around and get a better idea of how damaged the joints are. It takes about 20 minutes per joint.
We discovered during this procedure my left joint is moderately damaged; they are not too concerned about it compared to the right side. The right is severely damaged, much more so than he had originally thought. He went ahead and made a mold for a mouthpiece during the procedure because I have trouble opening my jaw far enough when awake. The doctor now feels surgery is definitely in my near future, possibly as soon as 6 weeks away if insurance cooperates.
I have not been recovering as well as I had hoped from the procedure. The point of arthrocentesis is to relieve pain, but i'm still struggling significantly. Currently i'm taking at least 1 narcotic pain reliever a day, but hope to stop this soon. I'd rather stick with muscle relaxants and high dose Ibprofen if possible. While some pain from prior to the procedure is a little less, there is some new pain. I'm still very, very high on my pain scale.
I now have a new prescription for physical therapy, solely focused on my jaw. I'm my PT's first TMJ patient and he is excited to try some new things. I wouldn't want to go to anyone else even if they had experience; i've been with him for almost 8 months now and am comfortable where i'm at. I think we'll both learn something along this journey.
So, that is my update. It has been a very tough week but i'm hanging in there. Please pray i'm able to keep up with work as I wait for surgery. The pain is getting tougher to deal with each day that passes. My next appointment with the oral surgeon won't be until the insurance approves the mouthpiece and then it is made. It could be another two weeks and I don't know how i'll make it that long. Pray it goes fast.
Monday, January 11, 2010
Hit the Wall
While I would love to claim i'm feeling as content as my furry child Melanchthon pictured here, that would be by far the falsest statement I have made in my 29 years here on earth. Mel is indeed curled up here at my feet, happy and as lazy as ever. All three of my fur-children continue on today as they do everyday; eating, sleeping, getting up only to use the restroom when it is deemed absolutely necessary.
Today I have finally hit my wall. I awoke this morning realizing the second I opened my eyes it was not going to be a good day. While it is Monday (usually good news as it is my day off) the news was not good as the pain was immediate. The nerves around my eyes were immediately shooting pain just at the movement of my eyelids.
I went to physical therapy which helped for a little while. I then went to another doctor appointment where we decided I should start to wean off topamax since it is not helping at all (on for migraine symptoms). The drive is two hours each way to this doctor appointment; part of the joy of living in the rural part of the country.
I have been in tears all day. My pain levels have been a bit nuts and I think my emotions have gotten the better of me. I'm at that place where you hit the wall and everything comes tumbling down. I've done a fairly decent job of keeping up a front for people so they don't seen just how bad things really are. I'm wondering how well i'll do with that now that the floodgates have opened. I can't seem to stop crying anymore. The littlest things are causing me to cry now.
I'm hoping and praying my emotional and physical health can hang on just a bit longer...at least till we get to surgery. I need to stay strong for the sake of keeping my job and my sanity.
Saturday, January 9, 2010
Initial Consult
I apologize that it has taken so long to post about my appointment. The past few days I have been extra tired. It's been exceedingly difficult to maintain my schedule with the fatigue. By the time I would sit down to post, I would fall asleep!
The hospital was much larger than I expected it to be. While I had visited before, I never actually went inside. This would had been a good idea, as it took much longer to make my way through than I anticipated. It would a good thing I arrived early because by the time I made my way from the parking garage to the oral surgeons, I only had five minutes to spare! It took about 20 minutes to walk from my car to the appointment. Amazing!
They did a panoramic x-ray which I expected. I hadn't had one done in a number of years so it was good to have a new one done. I was glad I had brought so much of my medical history with me, including a written report from my ENT, the original write-up from my accident, and a list of all the medications and treatments I have had over the last few years. It was much longer than I had realized but shows just how much treatment i've really gone through.
What we have found so far is that the condyles of my jaw are flat with bone spurs on them. The condyles are supposed to be rounded so this is not good news but is to be expected with the length of time I have had TMD and the clenching/grinding I have been doing for 22 years. They also found I have signicant myofascial problems which we already knew. We will not know much else without an MRI.
The appointment was about an hour long. There is little hope for conservative treatment due to the fact i've already done almost everything there is to do. They do not want me using the NTI splint anymore because it is doing more damage than good. The doctors (there were two) prescribed 800mg 3 times a day of motrin plus a new muscle relaxant (skelaxin) to see if it will help. In a couple weeks i'll go in to make a mold for a new mouthpiece to wear 24 hours a day. They are hoping this will help a bit.
If this doesn't work they will do athrocentesis. This is an outpatient procedure where the doctors go into the jaw laproscopically, clean out the joints and look around to get a better picture of what is going on. While they do this they inject steroids into the joint. If this doesn't work we will move forward with surgery.
The surgery we are planning on is twofold: The doctors will round out the condyles to give them a normal shape, hopefully prevents the discs from getting lost again. They will then attempt to get the discs back to where they belong. If the discs are too far damaged, they will remove the discs permanently.
90% of cases of TMD do get better with conservative treatment. The doctors said they would have expected to see mine respond better by this point. I will admit, I hold little hope for mine to get better without surgery; maybe i'm just too much of a pessimist at this time and place in my life. I think i've just been through too many treatments to have hope anymore. When the doctor wrote out the prescriptions I just kind of rolled my eyes. I've been doing NSAIDS and muscle relaxants for so long, why would a higher dose do any good? Oh well, you just go with it and make them happy. He told me it is to look good for insurance. He said most of these steps are too look good for insurance, and because most cases do get better. He also said though that no doctor ever expects to see a jaw look like mine at 29 years old. So I guess i'm just the weirdo. :)
My physical therapist encouraged me to call the doctor back after my appointment to ask for trigger point injections. He felt the motrin/muscle relaxant therapy was not enough for me. Since I would have to wait three weeks before seeing the doctor again, he didn't want me to continue hurting. My PT feels the muscles are too tight to be relieved through pills and I really need the injections. So, I called hopkins up again and have an appointment for the 13th. They wouldn't let me leave a message for the doctor to ask if he would be willing to do the injections. All I was able to do was make the appointment. I hope the doctor is willing to do it, otherwise it is a wasted 6 hours of driving. Oh well, here's hoping! The shots don't sound pleasant, but if it helps relieve the pain for a while, it is a good thing.
Overall, the appointment was amazing. He is a tremendous doctor, considered I guess the #1 in Maryland and one of the top in the nation. He treated me with a lot of respect and listened so well. I've never felt so validated in regards to my TMD and I really feel like i'm in good hands. It is the first time I know there is some direction with this and I have hope that maybe one day I won't be in pain. Just having that hope makes it all worth it.
The hospital was much larger than I expected it to be. While I had visited before, I never actually went inside. This would had been a good idea, as it took much longer to make my way through than I anticipated. It would a good thing I arrived early because by the time I made my way from the parking garage to the oral surgeons, I only had five minutes to spare! It took about 20 minutes to walk from my car to the appointment. Amazing!
They did a panoramic x-ray which I expected. I hadn't had one done in a number of years so it was good to have a new one done. I was glad I had brought so much of my medical history with me, including a written report from my ENT, the original write-up from my accident, and a list of all the medications and treatments I have had over the last few years. It was much longer than I had realized but shows just how much treatment i've really gone through.
What we have found so far is that the condyles of my jaw are flat with bone spurs on them. The condyles are supposed to be rounded so this is not good news but is to be expected with the length of time I have had TMD and the clenching/grinding I have been doing for 22 years. They also found I have signicant myofascial problems which we already knew. We will not know much else without an MRI.
The appointment was about an hour long. There is little hope for conservative treatment due to the fact i've already done almost everything there is to do. They do not want me using the NTI splint anymore because it is doing more damage than good. The doctors (there were two) prescribed 800mg 3 times a day of motrin plus a new muscle relaxant (skelaxin) to see if it will help. In a couple weeks i'll go in to make a mold for a new mouthpiece to wear 24 hours a day. They are hoping this will help a bit.
If this doesn't work they will do athrocentesis. This is an outpatient procedure where the doctors go into the jaw laproscopically, clean out the joints and look around to get a better picture of what is going on. While they do this they inject steroids into the joint. If this doesn't work we will move forward with surgery.
The surgery we are planning on is twofold: The doctors will round out the condyles to give them a normal shape, hopefully prevents the discs from getting lost again. They will then attempt to get the discs back to where they belong. If the discs are too far damaged, they will remove the discs permanently.
90% of cases of TMD do get better with conservative treatment. The doctors said they would have expected to see mine respond better by this point. I will admit, I hold little hope for mine to get better without surgery; maybe i'm just too much of a pessimist at this time and place in my life. I think i've just been through too many treatments to have hope anymore. When the doctor wrote out the prescriptions I just kind of rolled my eyes. I've been doing NSAIDS and muscle relaxants for so long, why would a higher dose do any good? Oh well, you just go with it and make them happy. He told me it is to look good for insurance. He said most of these steps are too look good for insurance, and because most cases do get better. He also said though that no doctor ever expects to see a jaw look like mine at 29 years old. So I guess i'm just the weirdo. :)
My physical therapist encouraged me to call the doctor back after my appointment to ask for trigger point injections. He felt the motrin/muscle relaxant therapy was not enough for me. Since I would have to wait three weeks before seeing the doctor again, he didn't want me to continue hurting. My PT feels the muscles are too tight to be relieved through pills and I really need the injections. So, I called hopkins up again and have an appointment for the 13th. They wouldn't let me leave a message for the doctor to ask if he would be willing to do the injections. All I was able to do was make the appointment. I hope the doctor is willing to do it, otherwise it is a wasted 6 hours of driving. Oh well, here's hoping! The shots don't sound pleasant, but if it helps relieve the pain for a while, it is a good thing.
Overall, the appointment was amazing. He is a tremendous doctor, considered I guess the #1 in Maryland and one of the top in the nation. He treated me with a lot of respect and listened so well. I've never felt so validated in regards to my TMD and I really feel like i'm in good hands. It is the first time I know there is some direction with this and I have hope that maybe one day I won't be in pain. Just having that hope makes it all worth it.
Wednesday, January 6, 2010
Brief Update
I'm back from the appointment at Hopkin's. Everything went extremely well. The physicians there are beyond amazing. Fortunately and unfortunately the medications he gave me are already starting to kick in. One i'm only supposed to take at night as it makes me sleep; let's just say it is working beautifully at the moment. :-) So, I will give you a detailed update tomorrow.
Thank you for checking in and most of all your prayers.
Thank you for checking in and most of all your prayers.
Finally Here
Well, the day is finally here. I will be headed to the oral surgeon's office later today. I'm a bit nervous and am praying to finally have some answers and possibly relief. My hope is that there is something they can do today to at least provide some temporary relief. My physical therapist thinks he may do some trigger point injections do bring down some inflammation which should relieve some pain. Sounds quite pleasant. *smile* I'll take anything if it means less hurt.
If you could, please say a prayer or two they are able to find some answers. I'm really hoping this is the doctor that is able to help. I'll update when I get home tonight. I know I won't come home with tons if information as this is only the first consultation, but at least it is the start.
There is new snow outside so I hope the weather isn't going to be too icky today. It is a three hour drive each way. Gotta love Pennsylvania!
If you could, please say a prayer or two they are able to find some answers. I'm really hoping this is the doctor that is able to help. I'll update when I get home tonight. I know I won't come home with tons if information as this is only the first consultation, but at least it is the start.
There is new snow outside so I hope the weather isn't going to be too icky today. It is a three hour drive each way. Gotta love Pennsylvania!
Sunday, January 3, 2010
The Good Days
It is when you are at your lowest that God sometimes sweeps in and blesses you with a good day. I love those little surprises.
Today I was preaching on how God came to us in Christ's birth, and how he continues to still come today. As we enter this new year, we can look forward, we can look ahead with anticipation, knowing that God promises to be with us each step of the way.
I was blessed this morning to awaken to a day where I felt God's presence in my life. I felt God come down and touch me, heal me, with a day where the pain was not overwhelming. I was able to enjoy myself as I led worship. I didn't lose my words like I have so many other Sundays recently due to the fog overtaking me, a dizzy spell, or the pain being too much. I was able to have clear conversations and follow what others were saying throughout the Sunday morning, during the visitation I did after services, and this evening as I had guests at my home.
Today, I felt somewhat normal. While the pain is still present, while I know I am not healed by any stretch of the imagination, it was indeed a good day. It was one where I was able to get everything done that needed to be done, and there was even time to have some fun. And for this, I can be thankful. It is days such as this I praise God and will hold onto when the not so good days arise.
Today I was preaching on how God came to us in Christ's birth, and how he continues to still come today. As we enter this new year, we can look forward, we can look ahead with anticipation, knowing that God promises to be with us each step of the way.
I was blessed this morning to awaken to a day where I felt God's presence in my life. I felt God come down and touch me, heal me, with a day where the pain was not overwhelming. I was able to enjoy myself as I led worship. I didn't lose my words like I have so many other Sundays recently due to the fog overtaking me, a dizzy spell, or the pain being too much. I was able to have clear conversations and follow what others were saying throughout the Sunday morning, during the visitation I did after services, and this evening as I had guests at my home.
Today, I felt somewhat normal. While the pain is still present, while I know I am not healed by any stretch of the imagination, it was indeed a good day. It was one where I was able to get everything done that needed to be done, and there was even time to have some fun. And for this, I can be thankful. It is days such as this I praise God and will hold onto when the not so good days arise.
Saturday, January 2, 2010
Sure, if you say so...
Have you ever found yourself at your physicians office, at your wits end, just saying, "yeah, sure doc, if you say so". It is when you get to that point where you are tired of them not quite hearing you when you say, "no doctor, really, it isn't stress" or "really, i'm telling you, they aren't migraines" or " for the 10,000th time, this medication really has never made a difference"!
I've found over the last few months, or really over the last few years, i've said this more and more. "Yeah, sure doc, whatever you say". "Of course it is the stress. Wow, definitely, it must be those darn migraines again." "Gosh, maybe I really do need anti-depressants and it is not jaw pain".
There are so many medical conditions out there that are misunderstood, and I am finding TMD has got to be one of those that fits within at least the top 20 or even top 10 of the most misunderstood in our medical community. It is so misunderstood that insurance companies often cannot even agree whether it is medical or dental, so often it is not covered by either. Praise be to God that I have coverage, but it is a very rare case someone is blessed with this (mine falls under medical).
My doctors here at home have little to no experience with TMD. I am actually one of the first cases my physical therapists have seen of TMD in their office. The one physical therapist from the College that came in the other day is a professor at St. Francis University, and he has seen less than 10 cases in his career. My own physician believes TMD is myofascial at heart and I just need to "relax" as he loves to say. The most he has done is refer me to a neurologist. When we found nothing wrong with my brain he agreed it is my neck and jaw, sent me to PT, prescribed me some drugs, and suggested I again, "relax". Not once was I referred to an oral surgeon. I had to do this on my own, remembering this was strongly urged by an ENT back in 2002 (he believed I needed surgery then but I didn't have insurance to cover it).
Anyway, back to my point. I have found myself getting to the point that I am just nodding my head, going along with what doctors say as I don't feel like battling it anymore. It seems their minds are made up before you even open your mouth. What feels even more true is that their ears are totally closed up. Do they ever listen to what you say? I swear I wonder if my primary doc even knows my jaw hurts? Just relax? I'm telling you if I hear that one more time i'm gonna smack someone! :) I know part of TMD is stress, but how do you relax when your jaw hurts all the time? Part of clenching is due to pain. Pain creates stress. I do meditation stuff, massage, heat and the like...which of course is awesome and can help, but it doesn't take away from the fact that my jaw is massively out of whack. Pain is pain Dr. Dude!
Alright, those good muscle relaxants are kicking in so it is time for bed before I start typing anything too crazy. Goodnight dear virtual readers...
The Overplanner
Some may consider me an overly-annoying planner. While in most areas of my life I am a chaotic mess, when it comes to planning out my future, well...let's just say the OCD traits come flying out.
It seems whenever something "big" is coming up, I tend to research things to death, always laying out the "what-if's" and having some sort of plan in place in case, A, B, or C happen. It is not neccesarily because I am worried about something or even excited; it is just what I do to get my brain in order. I actually find it to have a calming effect on me.
This trait in me has especially been prevalent when it comes to my health. I've seen it in its crowning glory on days when my TMD pain it at it's worst. Maybe it is a coping mechanism, but I tend to overdo it sometimes.
As my jaw has been so bad lately, especially as the clock ticks closer to my surgeon appointment, I have been doing more of my "what if" planning. I guess it is because I know the door of my future can swing in so many directions.
My work requires my jaw to work quite well, as I am a public speaker. Those I work with have been divided in terms of support while my health has progressively gotten worse. I do worry about what will happen when surgery comes calling, and of course what will happen if things don't go in a positive direction afterward. What if I do require more surgeries in the future? What if I have to look into alternative lines of work later in life?
I was silly to voice some of these things to a family member tonight. Bad idea, I know. I am learning those around you do not want to hear what the little voice in your head is thinking. While you may think it is logical to make lists in your head, research surgical procedures, doctors, etc online...not everyone does. My thinking ahead brings soothing and comfort to me but to my others it may simply tell them that I am neurotic and expecting the worst.
I wonder sometimes if this is a normal reaction to such life events? Do others do such planning and research in the midst of possible surgeries or other life-altering situations?
I think next time I do my research or have my thoughts, maybe i'll just blog about it rather than telling my loved ones. It may be a bit safer. :-)
It seems whenever something "big" is coming up, I tend to research things to death, always laying out the "what-if's" and having some sort of plan in place in case, A, B, or C happen. It is not neccesarily because I am worried about something or even excited; it is just what I do to get my brain in order. I actually find it to have a calming effect on me.
This trait in me has especially been prevalent when it comes to my health. I've seen it in its crowning glory on days when my TMD pain it at it's worst. Maybe it is a coping mechanism, but I tend to overdo it sometimes.
As my jaw has been so bad lately, especially as the clock ticks closer to my surgeon appointment, I have been doing more of my "what if" planning. I guess it is because I know the door of my future can swing in so many directions.
My work requires my jaw to work quite well, as I am a public speaker. Those I work with have been divided in terms of support while my health has progressively gotten worse. I do worry about what will happen when surgery comes calling, and of course what will happen if things don't go in a positive direction afterward. What if I do require more surgeries in the future? What if I have to look into alternative lines of work later in life?
I was silly to voice some of these things to a family member tonight. Bad idea, I know. I am learning those around you do not want to hear what the little voice in your head is thinking. While you may think it is logical to make lists in your head, research surgical procedures, doctors, etc online...not everyone does. My thinking ahead brings soothing and comfort to me but to my others it may simply tell them that I am neurotic and expecting the worst.
I wonder sometimes if this is a normal reaction to such life events? Do others do such planning and research in the midst of possible surgeries or other life-altering situations?
I think next time I do my research or have my thoughts, maybe i'll just blog about it rather than telling my loved ones. It may be a bit safer. :-)
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