Appointments and Appliances

I've had two appointments since the last update, and need to fill you on the latest.  Again, I will TRY to be as brief as possible, but...I'm wordy and so much is happening!  In the last update I had mentioned that I was headed to the ear/nose/throat/sleep specialist and that my 1st doctor had pulled some strings to get me in the same week.  It was interesting appointment. I was a bit disappointed with this doctor initially.  He hadn't read any of my file, looked at my cat scans or sleep study and after asking me some questions about my sleep habits, seemed to wonder why I was there.  He did examine me then and told me that my deviated septum is pretty severe.  It is supposed to be a straight vertical line, but mine is bent at a 75 degree angle, which probably is affecting my breathing.  He asked me if I thought I had difficulty breathing and I said I didn't notice a problem, but it's just the way I am and I am used to it, so how would I really know?  Upon leaving he told me that he would look over the file and reports, talk to  my first doctor and then let me know what he thought.  I was like, "WHAT?, That's it?"  So, I felt like it was a bit of a wasted trip.
Fast forward to the next week (last Thursday).  I was very excited to go to this appointment for a couple of reasons. 1. I would get my mouth appliances that were fitted for me instead of my temporary one that drove me nuts. 2. I would get to meet the creator of this whole treatment process. The assistant fit me to the appliances and then took a new cat scan with the daytime appliance in and another with the nighttime set in to make sure it was set like it was supposed to be.  Then the doctors came in and I was able to meet the creator of it all...it was awesome to hear from him, see the two doctors interact and analyze me and for this doctor to agree with the treatment plan, other than to say that we need to step it up and attack even harder so that we can get rid of my pain.  I also discovered that there are only 28 doctors in the US trained in this...God has His hand in all of this and the timing of it...I can totally feel that.  11 years ago when this all started, my main doctor wasn't out of med school yet...God's timing is perfect!   As they talked to me, the 1st doctor, Dr. K, told me that he wished he could've "warned" me about the ENT/sleep doctor.  He told me he likes to meet with and examine the patient, with no prior knowledge of the situation (scan results, sleep results, etc...) and then he examines the results and my group of 3 doctors sat down and discussed it together to collaborate and work on a plan for me. They did tell me that I will have to have surgery to correct my deviated septum.  When I asked more questions about this (I mean, really, who WANTS to have surgery?), we realized that I had misunderstood, in a way, my original diagnosis.  So...they believe that the root of all of my injuries (jaw, foot and back) goes back to my deviated septum in my nose causing me to not be able to breathe properly.  The inability to breathe properly through my nose has in turn affected my mouth and jaw issues, which has then spread itself and eventually manifested in my neck. WOW!!!  So, this treatment, along with the surgery for my deviated septum could truly fix me!
By the end of the appointment, both Doctors K and Doctor Creator gave me a long list of vitamins that I had to go get at the Vitamin Shoppe.  I was so clueless walking into the store and spent quite awhile trying to find everything...so 45 minutes and over $100 later, I headed home again, along with stopping to get a prescription of anti-inflammatories as well. Seeing the two doctors together was exciting, encouraging and hopeful for me.  Doctor Creator pushed Dr. K to treat me more aggressively...instead of spreading things out, to take a no holds barred approach to get me better. He told me that the reason he created this treatment was because he had suffered with migraines for years and no one or nothing (meds) helped him at all. He had enough and was determined to fix himself...and he did!  Now his goal is to help as many others as possible through his network for doctors that he has trained. He looked me in the eye and told me that I had suffered long enough and that I was going to get better!
The first few night of sleeping with the night appliance have been challenging.  The nightwear is pretty invasive.  Here's a picture of the night guards...there is actually a small appliance on the bottom and a much larger one on top that has a ring hanging down from it so that I can't fully close my mouth.

 I know it is hard to see and it is a bit dark...I don't put it in until RIGHT before bed because I can barely talk in it.  It is very invasive and uncomfortable, but I'm slowly getting used to it.  The next picture is my day appliance that I wear at all times, even while I am eating (which is also a challenge).  It is hard to see in the picture because they are clear. I'm adjusting pretty quickly to the day guard.

I go back at the end of this week...I am hopeful.  I have already had a few LESS-Pain days. I'm taking less Tylenol and the "diet" of gluten free, dairy free and sugar free is going really well!  To God be ALL glory in this...He is amazing and I see him working at every turn.  I can't begin to show it all here (or maybe you see it yourself), but He is so evident at every appointment and the timing of it all. Thank you God, for hope, patience, sustenance and joy!

Impressions

I think I will try to log and track my updates on my treatments here, and just link them to Facebook.  I know many want to follow the progress and it is difficult to keep everyone in the loop.

Impressions...this title is two-fold. My impressions of my doctors treating me right now are nothing short of amazing. Have I mentioned that I love my new doctor?  Each time that I go (3 times now), along with visiting the others on my team of doctors and office staff that I interact with...this group of people are truly amazing and even if I am not healed through this, I feel blessed to have met and worked with these people.

I went for another visit on Monday and had impressions taken of my mouth in order to get my mouthguards ordered. It was easier than I anticipated (thankfully) and not even a single gag from me!  Hooray!  We reviewed my plan, as well as completed strength testing, that I will do each time that I go to monitor my progress throughout treatment.  They then prepared me for my take-home sleep study and gave me the machine to take home.  I took a picture of me in it, but I will refrain from posting it because I also had calamine lotion all over from a case of poison ivy and it is a bit scary!  He told me he was trying to get the sleep study done as quickly as possible so that he could get the results to the 3rd doctor I will be seeing.  When he asked if I had an appointment with him yet, I told him that it was not scheduled until July 22.  He told me that wasn't acceptable and that he would talk to that doctor that evening and try to get me in during the next week and that I should hear from his office in the next couple of days!  He then told me that normally the appliances are in within a few days, but asked if I would be willing to wait a week and a half to come back for them because the doctor that "created and researched" this process that we are following will be in town and he would really like for him to meet me and examine me too.  I happily agreed...what's one more doctor prodding me, and if it is the guy who created what may heal me...I'm more than happy and excited to meet him!  So, I go back to the dentist/dr. on Thursday, the 26 for the appliances and to meet with both doctors.  I was SUPPOSED to also go to my shot doctor for my foot at the end of this appointment, but it went long and I missed it! Thankfully, since I had to return the sleep study machine on Tuesday morning, the shot doctor got me in on Tuesday morning so I would only have to drive that long drive once instead of multiple times.

Kiara and I set off to return the sleep study and head to the doctor on Tuesday morning.  As I returned the sleep study, they handed me a note from the doctor that had a new appointment for the ear/nose/throat and sleep study specialist...instead of July 22, I will now see him THIS Thursday, June 19!!!  I guess my doc has some pull!  He wanted this visit to take place before seeing him next week with this doctor who created this.  Off to the shot doctor we went then.  He believes that I have strained/sprained the tendons and ligaments in the front arch of my foot.  He gave me several shots and then taped my foot.  I am not limited in my activities, as long as I have my foot taped at all times to secure and support that area of the foot. I will tape it every day for 4 weeks and then return to see how it is doing.

This is the summer of doctor appointments apparently, but I am so thankful for being off as I can't imagine how many days I would have eaten up going to all of these appointments.

A side note that I didn't mention...Monday started out a little frazzled.  Last week when I went to the dentist it took me about 45 minutes...Monday, I got stopped in traffic for a broken down RV that they were hooking to a tow truck and moving so I was running behind.  Then when I got to close to the dentist, I got stopped at a railroad tracks for about 13 minutes!!!  It took me an hour and 10-15 minutes this trip.  I had to call to tell them I was still coming but that I had difficulties! Luckily they still took me back but boy was I frazzled by the time I rushed in 15 minutes late!

So, that's where I am at this point.  I feel hopeful. I feel happy. Even being on this crazy gluten free, dairy free, sugar free diet!  My impressions of this treatment so far... are very good!

Glimmer of Hope

The last year or so, I have kept to myself quite a bit with my neck pain.  In the last 4 months, my pain has increased significantly and after taking over a year off of any attempts to seek treatment/healing, I felt God telling me that it was time to begin again. Phil and I sat down and laid out a 'plan' of action...who/what we would try first and go from there...my first 3 choices on the plan of action either fell through, or I couldn't be seen for months, so I went on to my fourth choice. (Don't tell that doctor he was my 4th choice--Ha!)  I went back to my "shot doctor" that I had seen a couple of years ago as he had written me a note out of the blue that he had some ideas and new training that might help me. I met with him and he tole me he was working with a team of doctors that they have had great success treating those with chronic pain that other treatments alone had not helped.  The odd thing...the Dr. was a dentist.  I've tried so many odd things through the past 10 1/2 years that it didn't really phase me and I said, let's go for it.  So...I saw this dentist at the end of May for a consultation.  He told me he saw enough red flags that he wanted to pursue doing some tests with me to determine if he thought he could help me.  At this initial visit I have to say that I was BEYOND impressed with the Doctor and his office staff.  I have NEVER been to an office where I felt so welcomed, taken care of and understood.  He went through my entire 10 1/2 year history in detail with me and really listened to me.
So...we set up a "next" appointment to have some extensive (and expensive) testing done.  Below is the overview/update/plan of action from that appointment.

Some have been waiting patiently for this blog, others did not even know it was coming...I will try to keep it concise but a 2 1/2 hour appointment with a doctor has SO much information to pass on!
The appointment started with a battery of tests...measurements of my mouth, placement of jaws, pictures of all that, pics of my posture from all angles, pressure points of pain on my upper body, a cat scan from the shoulders on up, strength tests, including a "chronic pain test" to test whether I truly had this pain or it was in my head (he didn't tell me ahead of time on that one or I might've flipped out!) and much more. With this chronic pain test, he did something that was very good for me emotionally...if you want to know details of how he did it, I can tell you but I will leave it out as this is a long one.  Anyway, at the end of the test he got down to my eye level and said to me "You have chronic pain." He paused as I looked confused and thought.."Duh, that's why I'm here!"  He then told me what I was thinking and said he just did a test that has been proven 99% of the time accurately to show whether a patient is truly suffering from chronic pain and it isn't mental and he said it was beyond obvious that I AM in chronic pain.  He is really only the 2nd doctor to ever say these words to me.  I cried and he teared up...
Then he analyzed all of the data they had collected with me, step by step, to show me and explain to me what they had found.  The simple explanation....He believes that my neck pain is not the actual injury point (which is why in 10 1/2 years, they can't find anything truly wrong with my neck), but believes my neck pain is a result of my body compensating for other injuries over time.  He believes there are multiple injuries in my body, but wants to focus on what he calls the primary injuries. He believes my injuries are: Jaw injury, foot injury, lower back injury, along with a deviated septum in my nose which is causing an inability to breathe properly (which contributes to the jaw problems).   So, what's the plan?  Our big focus was on the physical treatment, but we also discussed whole health of body, mind and spirit/emotions.
THE PLAN--
1.  I will be fitted Monday for mouth guards that will be worn 24/7...a bottom guard to be worn during the day and a top guard to wear at night. I have a temporary generic one right now that is not going well...I keep gagging on it it because of it's design...so pray that my real ones come in quickly!
2.  I will go back to my "shot doctor" on Monday afternoon for him to work on my foot. This doesn't necessarily mean shots to my foot, as he does other things too.  Oh...and the foot injury...I had no idea my foot was injured but he did a pressure point thing and I about came out of the chair because of the pain...he did the same on the other foot and no pain at all.  Very bizarre!
3.  The deviated septum problem will be analyzed by a ear/nose/throat specialist who also specializes in sleep issues.  Before going to him, I will be taking an at-home sleep study test for him to analyze.  They do not think I have a sleep problem related to the deviated septum, but want to be sure.  I do not wake up rested, but he feels strongly that is because of my pain, not because of a sleep problem.  He wants to be sure that is the case.
4. He has asked me as a whole health approach to go gluten free, sugar free, and dairy free.  This is partly because these foods have inflammatory tendencies and we want to rid my body of that so that it can heal more effectively.  But the idea of simply "eating and being healthy" can only promote feeling better and working with my body to heal.
5. This is a process...I will not feel better overnight once all of this begins.  He reminded me I have suffered for 10 1/2 years and it likely started before that even...my body is going to take time to recover, heal and move forward.
Soothing salve moments-->
1. Acknowledging I have chronic pain and tearing up with me.
2. In our discussion that he thinks that I CAN be helped and feel better after so long, we both got emotional and he had to step out a minute. When he returned he told me that my story has really touched him and he wants so desperately to help me and was so thankful that the tests came out how they did so that we can keep moving forward.
3. He talked to me about how good of a "faker" I have become, as I fooled him in my first visit as well about the level of my pain.  In fact, very few people at my schools this year have any idea that I suffer from pain.  Only the few that I felt necessary to tell.  He talked with me about how I fake it all day long to everyone and that he bets I even fool my family and they don't realize how badly I feel some days, and talked about how he bets that I come home from work and want to curl into a ball and hide from the world and have nothing left to give my family.  At this point the tears were rolling down my cheeks.  He encouraged me to try to be a bit more "real" with my family especially so that they can see the changes (hopefully) that are taking place...he also told me (which I knew) that "faking it" is taking a huge emotional toll on me and that will hinder the healing.
4. He told me that each time I come I will re-hear what is going on with me, what they are currently doing and what they will do next.  He said that he knew my mind was going all over, especially with questions of why this hasn't been discovered before and that I can't process it all at once because of this long journey.  He encouraged me to not think about all of the past treatments and how they didn't work and question why, but to simply move forward and look forward with him and work whole-heartedly on the NOW.
5. There are more, but my mind can't think of them all...have I mentioned that I LOVE this doctor???

So, I am hopeful.  The treatment is very expensive and they are out of network (of course) so most of it is going to be out of pocket...insurance has said it will pay 'up to 50%' but the office manager told me that my insurance usually does not pay well with other patients they have had and to plan on managing it on our own. But Phil and I feel like we have to do this...we have to try it.  To have someone believe in me, believe it is possible to be healed after all this time, to be encouraged and understood in such a way...if nothing else, emotionally it has been amazing.  As I look back and think this was choice number 4 on our action plan, I am so thankful that the first 3 didn't work out, as it could've been months or even years before I reached this doctor.  Pray with me that this is it!!!!  But more importantly, pray with me that I can continue to give the honor and glory to God and receive His strength and hope first and foremost.

Sorry for the incredibly long post...I only scratched the surface believe it or not...send me an email or facebook if you want to know more details or have specific questions.  Thank you for sharing this journey with me...God is amazing and is doing GREAT things...I just KNOW it! :)