6 months down!

The 6 month appointment is over, and we are very excited, relieved and amazed at the recovery and results at only 6 months. I am very proud of Bec and how great she's done through the whole process. Following the doctor's orders is always a key to success, and I feel that Bec's recovery is a reflection on how well she's followed orders. Sure, there have been some cheats along the way...but her recovery is going so well - and the patience and diligence she's shown along the way has helped the recovery go smoothly. 

The thought of the 6 month appointment was not as stressful or anxious as the 3 month appointment, knowing the recovery was going well. Bec went through the standard procedures...CT scan, jaw measurements and short consultation with Dr. Piper. Measurements were great. Next we found out that as long as the splint was still fitting on her teeth, this most likely meant everything was healing just fine. In addition, the tech that performs the CT scan said that at this point, the discs are solid enough to withstand most trauma. In other words, if something were to happen (like a car accident, etc) now, the discs would most likely hold. After being rear-ended twice over the past 16 months, this was a legitimate concern we had after surgery. It's a relief to know we wouldn't need to worry as much going forward. 

The consultation with Dr. Piper went very well. He was pleased with her progress and had no concerns at all. He gave her the go ahead to only wear her splint once during the day for 1-2 hours and all night. This will be the protocol until we see him again in March. In addition, Dr. Piper said that Bec can now eat 3 soft-chew meals each day. He discouraged hard lettuce but said she could even eat softer salads. Dr. Piper also mentioned that braces will fix Bec's bite after she is finished with her splint in March. In other words, an additional surgery is likely unnecessary. Back when we were first referred to Dr. Piper, we were told that there was a possibility of 2-3 surgeries total, so knowing the only surgery is behind her is a great feeling. 

Bec was very happy to see Cassie back at the Piper Clinic. Cassie is great and makes everyone feel welcome at the clinic. I remember feeling grateful to Cassie during the 14 hour consultation day back in May, because she kept checking on us and explaining every detail during the day. 

Sometime in the next 3 months, Bec will be getting an orthodontics consult to review with Dr. Piper at her next appointment. At the 9 month appointment, Bec will get her surgical brackets removed and will be splint free - as long as she gets her braces on within a week of the 9 month appointment. Once she has her braces, she will have rubber bands on her braces for 12 hours during the day to take pressure off the jaw joints. After the 9 month appointment, Dr. Piper anticipates only seeing her at 15 & 24 months post-op. The light at the end of the tunnel is getting much closer!

As I reflect on the past year, I am happy, relieved and excited to see Bec get  a better quality of life. She used to have up to 2 migraine type headaches each week...headaches that sent her to bed unable to function. Now, I'm happy to say that I don't remember the last migraine she's had. Life is getting so much better, and I hope it only gets better from here. When I set up this blog, I titled it "TMJ: the hope of a better future". Sure enough, Bec's future seems to be getting better. I'm grateful that we finally found the right doctors to help her quality of life become better. 

While we were down at the 6 month appointment, we enjoyed spending time together and relaxing. I will update everyone again in March after the 9 month appointment. 

(It was weird walking around in the 70 degree weather, looking at Christmas lights. Christmas is supposed to be cold, right?)

3 month checkup

Today, September 15th, was the day we were looking forward to before Rebecca even had surgery, the 3 month checkup. I remember talking about the surgery with more of a 3 month mindset instead of the full 9 month recovery. The 3 month checkup would answer many questions, would hopefully put our minds at rest, and would most of all give Bec the permission to eat 1 meal each day!

We started the trip to St. Pete on Monday, the 14th. Since we had good notice of the appointment times (instead of 3 weeks to plan a flight like we did for the consultation), we found a great deal non-stop from O'Hare to Tampa. We arrived in Tampa around 5pm...

Since we've been in the St. Pete area several times in the past 4 months, we knew the area pretty well and found a nice apartment to stay in across the street from St. Pete Beach. After we got settled into our room, we met Natalie for coffee so her and Bec could discuss their surgery stories (Natalie had surgery the same day as Bec...and I totally forgot to take a pic to share). It was great seeing her. 

The next morning, the 15th, was the big day. We arrived at Dr. Piper's office at 9:30, and they took Bec for a CT scan that we would later see and discuss with Dr. Piper. After the CT, Tanille came in and did a preliminary check of Bec's progress. Tanille has been great through this whole process and has been a huge help with scheduling appointments and helping gather the info we needed to provide to our insurance company (and, no, our insurance still hasn't paid a dime...and it's not looking promising to get anything). Here is a pic of Bec with Tanille:

While Bec was getting checked by Tanille, we asked whether it was ok that Bec was able to open her mouth and talk with the splint in. Previously, Bec asked the physician assistant, Jeff, if this was normal, and he said not to worry. However, both Tanille and later Dr. Piper said that she should not open her mouth to talk with the splint in. Dr. Piper said that she should leave her teeth in the splint and talk through it. This obviously caused some extra anxiety on Bec's behalf, because she had been told wrong for the past 3 months. She was worried the fat grafts were going to be damaged. 

After a brief wait, Dr. Piper came in and did a brief check of the splint and thought everything looked good. Next, we went across the hall to see the results of the CT scan. Dr. Piper sits at a monitor to see the CT for the first time. We both sit next to him at 2 other monitors so we can see the results as well. As I mentioned, Bec was very anxious after hearing she wasn't following all precautions (since she opened her mouth and her teeth came out of the splint while talking), but Dr. Piper said right away that everything looked great. We were able to see the space between her lower mandible and the skull, where previously there was just bone on bone. The fat graft was doing its job!! What a relief. In addition, it appears the degeneration from years of bone on bone has reversed. Dr. Piper mentioned nothing about a full joint replacement. This was mentioned as a possibility in the consultation, especially if the bone continued degenerating. This was another huge relief knowing that the surgery and vitamins helped reverse the degeneration! Dr. Piper even thinks that braces alone will be able to assist in getting Bec's bite back to normal (currently, only a few teeth can even touch). Dr. Piper is awesome (and his mustache is also pretty awesome):

We do have another decision to make concerning another surgery. Because Bec's jaw stopped growing when she was 5, her left jaw bone is much smaller. Dr. Piper would be able to help lengthen the left jaw bone to make that side look more normal. Bec isn't sure if she wants to go through that surgery, but we have at least 3 months to make that decision.  For now, we are relieved that the surgery and 3 months of hard work have paid off. Bec is nearly pain free, and I couldn't be happier that she is going to have a normal diet with minimal pain very soon. 

After Dr. Piper, we had a consultation with Dr. Hobbs. Since Bec continued treatment back home after the surgery, he was very pleased with her progress. She is regaining the curve in her neck, but has a little work left. Over the years, she's had a lot of migraines, but those headaches have already decreased. Dr. Hobbs thinks if she is treated twice a month for the next few months, even more of the headaches will go away. We were excited to get the good news about her neck as well. 

After seeing Dr. Hobbs, we made a quick trip to see Dr. Jackson since one of Bec's brackets were loose. After that appointment, it was time for fooood!

Of course, the first meal after not chewing for 3 months was awesome. It was weird seeing her chew, and she was stuffed - a feeling she hasn't had in a while. Bec loves feeling normal at a restaurant again. The first meal was simple but delicious...a chicken salad sandwich with some french fries and heath bar pie for dessert. The view with the first meal wasn't bad either (we ate at Spinners on St. Pete Beach):

The second meal on the 16th, right before boarding the flight back home, was just as awesome...a burger and fries:

Now we're on the way home to see our kiddos after a rushed, amazing trip to St. Pete. 

The next few months will be much easier. Bec doesn't have to wear the splint as much. Right now, she wears it every night along with 4 periods of 2 hours during the day. One more month and she will only have to wear it 3 times during the day, 2 months and it's only twice during the day, working up to no splint during the daytime in only 4 months! We have another appointment on December 8th to see how everything is healing. I will update everyone again then...

2 Months!

2 months down and 1 to go before the elusive first soft chew meal! In many ways, the 2 months have flown by, and in many other ways, it seems like the splint breaks have been a part of her and a part of her schedule for so long. 

Rebecca is doing great, and I have to admit that I am proud of her. This might be the most difficult thing we've faced in our marriage, but Bec has handled this surgery better than I anticipated both emotionally and physically. Is everyday great? Absolutely not. But, she has pushed through like the amazing, strong person she is. She takes care of the kids by herself while I am working, cooks meals for us even when she can't chew them, has kept the kids active throughout the summer months so they don't feel like their summer has been affected, and has taken on a new role of Secretary of the Grove Elementary PTO - because she is awesome and cares about our kids' education. She is crazy awesome, and I'm completely in love with her and proud to be next to her along this journey. 

Bec is nearly pain free. She is grateful that everything seems to be healing correctly so far. The 3 month appointment in St. Petersburg will help calm her nerves regarding the degeneration that had started in her jaw. Dr. Piper thinks that degeneration will stop and possibly reverse into some new bone growth. We might know at the 3 month appointment whether she will need an additional surgery after the orthodontic braces. We are hoping for no additional degeneration and no additional surgeries. 

Bec is doing great on her therabite exercises and is almost completely down on the last setting - 5. She has recently backed off more on the muscle relaxers. She is also getting close to 5, 1 hour splint breaks per day and only has 3 bands on each side. Here are a few updated pics with and without the splint:

Bec has experimented with lots of food and sticks mainly to soups or other food that can be easily swallowed. Food doesn't sound good most days, but not eating normally is the hardest around bigger groups of people. She has kept a positive attitude throughout, and I keep reminding her how close we are to the 3 months. 

Rebecca's support system with other Piper patients has been great. I'm so glad we met a couple from Seattle the day before Bec's initial consultation. Kathleen has been a constant support and a great friend throughout this process. Whenever Bec has a question, she can get ahold of Kathleen right away. Kathleen has provided great advice and great emotional support for Bec as someone who really does understand. Bec has also been able to keep in contact with 2 ladies that had surgery the same week she did. The Jaw Crew has been a great support system, and Bec has met friends through the process. 

I will update everyone after the 3 month appointment on September 15th. But before ending this post, I have to share a pic of Bec and a new member of the family that will help her through her bad days...

Post-op Weeks 2 & 3

It's been nearly 3 weeks since surgery! Bec is still doing great, in my opinion. Here is some of what's happened since we've been home:

Week 2: Bec had a severe headache that kept her in bed for a few days. Luckily, we had a phone call appointment scheduled with the physician assistant from Piper's office (Jeff) on one of those days. Jeff was pleased with the progress that Bec made on her therabite exercises. However, he thought we cut back on the muscle relaxers too fast which was causing the severe headache. Instead of taking 1/4 of a muscle relaxer 4 times a day, Jeff suggested 1/2 a pill 4 times a day. After a few days, this solution seemed to work. Luckily, Bec's mom stayed with us most of the week to help take care of the kids (and laundry!) while I worked. 

Week 3: Bec regained her energy this week and has been busy organizing the house and shopping. She is also feeling good enough to plan 2 birthday parties in the next few weeks. She has continued with 5, 15 minute breaks each day from her splint. It's pretty hard to do the exercises, eat (I mean drink) food, and brush your teeth in a short 15 minutes. We are really looking forward to the 30 minute breaks that start in a few days! All the incisions are also healing very well. You can't even tell she had surgery around her ears, and her abdomen incision is feeling better. 

Here are a few recent pics that show how good Bec is feeling:

One of my hopes in starting this blog is that others going through similar situations will run across Rebecca's story and find some answers and hope for their journeys. For those people that run across this blog, here are a few tips (from the caretaker point of view):

1. This surgery costs a lot of money with little hope of being reimbursed by insurance companies. It's stressful. The money might hit your bank account the day you are leaving for surgery. You might wonder if you will get everything done in time. But it's worth it. A better future is worth all the stress. 

2. If you are the caretaker, download a pillbox smartphone app. The alerts will save you from forgetting medicine - especially since the patient is supposed to remain active - which means being away from your hotel/condo most of the day. 

3. The Jaw Crew on Facebook is a great support group for those going through Dr. Piper's fat graft surgery. Bec met a great friend the night before her consultation appointment that has been a HUGE help through this process. I feel it's important to get as much info as possible and to get as connected as possible with other people in similar situations. 

4. Find other blogs with other perspectives. The other two blogs I know of are:

http://mytmjdstory.blogspot.com/

http://grin-andbearit.blogspot.com/

These blogs were a HUGE help and have tons of great information. 

5. The meds post-op will make the patient very groggy and will cause them to forget most post-surgery outings. The meds might cause extra emotions. But they definitely help keep the pain under control. It's worth it to stay on all the meds on the exact schedule that Dr. Piper recommends. 

6. Don't worry too much about finding a special pharmacy that your insurance will cover. The Prescription Shop (the place Dr. Piper recommends) took our insurance and covered everything except the heating pad. It was one thing that insurance has covered so far! Also, if you don't already have one, purchase a pill cutter here. It's a great $6 investment!

7. Make sure you keep on top of the staff scheduling your approintments at the Piper Clinic. They are all very nice people, but we had many schedule problems throughout our 2 weeks in St. Petersburg. You will get a calendar with all your appointments when you arrive for the Friday appointment pre-surgery, but keep asking about upcoming visits at every appointment. 

8. Don't be afraid to schedule another appointment with Dr. Jackson if your braces are causing a ton of discomfort. Bec had to see him post-op because a bracket came loose. She asked him to adjust nearly all the hooks on the brackets, and it gave her immediate relief. 

9. Stay positive! There will be ups and downs. Being positive is a great support both to someone that has been through a big surgery and to someone that is trying to comprehend everything post surgery while on strong medicine. 

10. Take everything one day at a time.

Home!

We made it home! It's so nice to be back home after 16 crazy days. Rebecca did very well on the trip back. Here is a recap of our final few days in St. Petersburg:

Tuesday, June 16th: Since Rebecca was drained from the whole process, I took her to the beach for dinner to try and get her mind off everything. We ate at Spinners on St. Pete beach. Bec was able to have some soup that was put in a blender. This was the first time we attempted eating out, and the restaurant staff was very accommodating. The view from the restaurant was awesome. We didn't actually have a table on the part that spins, but we still had a great view:

Wednesday, June 17th: Rebecca saw Dr. Piper for the final time today. We had several questions since it would be 3 months before we saw him again. One of the holes in the splint was causing some discomfort due to a sharp edge, so Lisa was able to polish the splint to make it more comfortable. In addition, one of the posts on the splint needed fixed so Bec could band the splint properly. Dr. Piper gave Bec a vitamin schedule to follow in hopes it would help the condyle in her jaw to stop degenerating and possibly grow some. Today also included the removal of the stitches from her abdomen (where they took the fat grafts). 

Becca also noticed her back bracket was loose again, so we had to schedule a 5pm appointment with Dr. Jackson. Luckily, Dr. Jackson is at the St. Petersburg office on Wednesday afternoons and Thursday mornings, so we didn't have to spend extra time driving up to his Largo office. After the bracket was glued back, Bec re-banded her splint. While re-banding, she felt something pop, and sure enough, the bracket came loose again. Dr. Jackson re-attached the bracket, and she hasn't had any problems since. Evidently this is common due to the splint. 

Thursday, June 18th: We had one last appointment with Dr. Hobbs before heading back to Illinois. It was hard for Rebecca to leave the security of the doctor office and return to Illinois, but it was also exciting to head home. We met 2 of the other 3 surgery patients that had surgery the same week as Bec, so it will be nice for her to keep in contact with others going through the same process. In addition, Bec has met some great people on The Jaw Crew Facebook page that have helped her with various questions and concerns. The surgery and recovery is a huge process, but the support system we have in place is great. Our next appointment with Dr. Piper is in September. We will find out then how well everything is healing. 

Until September, Bec will have 5 breaks per day where she does exercises, eats (non-chew diet - so she basically drinks), and enjoys some freedom from the splint. For those that might be curious to see what the exercise looks like, here is a pic of her using the Therabite:

I'm relieved the surgery is over and glad to be home to start the recovery. Bec is super strong and is doing amazing so far. I'm sure there will be ups and downs over this process, but I'm excited and still hopeful that this is the beginning of a much better future...

Post-op Days 2-5

Saturday, June 13th: The combination of meds hit hard today and caused Rebecca a ton of drowsiness. I tried halving the muscle relaxers but that caused some small muscle spasms in the jaw area, so I decided to keep her on the full dose. We visited the Museum of Science and Industry in Tampa and enjoyed a cool IMAX on the future of space exploration. However, the kids weren't too impressed with the museum, so we left and went shopping for a bit at a mall in Tampa so Bec could walk around some more. Even though she has been extremely drowsy, as long as we are moving she is doing well. The minute she sits down, she falls asleep. All in all, today was a great day, and Bec is feeling better than I expected. 

Sunday, June 14th: Today is Gracie's 3rd birthday! Of course we brought presents for her (even though we had no extra room in the car), and we started the day by opening presents and singing happy birthday. Later that evening, we had a little party for her and had some cake. 

To keep Rebecca busy, we went to the Florida Acquarium today. We also went on a short dolphin cruise and saw a few Dolphins in the bay. The meds were making her even more drowsy today, but Bec was able to enjoy the aquarium. The med schedule is crazy. I downloaded a pill app to help keep track of everything, and here is a pic of her pillbox to give you an idea:

Bec is really looking forward to tomorrow so she can get her jaw unwired and have breaks from the splint.

Monday, June 15th: Today's the day Bec's jaw is unwired! We started the day off with some Starbucks to try and get a little kick of energy:

Then we headed to Dr. Piper's office. Rebecca's abdomen incision (where they took the fat grafts) has been bothering her. There is a ton of bruising above and below the incision, but Dr. Piper said this is normal. He said the bruising could even go down her thigh. After checking the abdomen incision, they finally removed the splint and introduced Bec to the jaw exercises she will be doing throughout her recovery. She was glad to have a little freedom from her splint. Here is her new look post-surgery (there is still some swelling, but the a-symmetry she had on the left side has shifted a little):

She was also able to move the rubber bands around and has a new look with the splint (she has a total of 10 bands for the next few weeks...in a couple of weeks she switches to 6 bands):

Today was a busy day. We now have a med schedule in addition to splint schedule to manage. The exercises have caused some additional pain and swelling. That is expected and should subside soon. Bec is able to remove her splint 5 times a day for 15 minutes. In a little over 2 weeks, she will have 30 minute breaks 5 times per day. 

Tuesday, June 16th: We had another checkup at Dr. Piper's this morning followed by some neck therapy. Bec has increased drowsiness today and is noticeably drained from this whole process. Dr. Piper's staff assured her this is normal and told her that she's doing exceptionally well. Dr. Piper told her that her speech with the splint in is great. Her pain levels are managed very well, even without pain meds around the clock. Bec will be released tomorrow, but we will be staying until Thursday so she can have therapy on her neck one additional day. 

Surgery and the first few days post-op

Thursday, June 11th: Surgery is over! Rebecca had surgery on both sides of her jaw, removing the discs and replacing them with fat grafts. The surgery started at 12:35pm and ended at 4:54pm. Bec was in a lot of pain when she got to the recovery room, but they were able to start managing the pain very well before she arrived in her room around 6:30pm. When she got to the room, she was fully awake and excited to see me (of course, I was super excited to see her as well). She had no nausea from the anesthesia, which was great since that was one of her biggest fears. Around 8:30pm, we were finally able to get her out of bed and start walking the halls. Dr Piper expects his patients (at least the 2nd surgery of the day patients) to walk the halls 5-6 times before going to bed. Bec was able to walk every 30 minutes because she was determined to get 6 walks in before sleeping. In addition, she drank tons of fluids and had 4 ensures before bed. Throughout this process, she never got nauseous and was only a little dizzy. 

Her first selfie after surgery (that's an ice pack around her face):

Walking the halls:

We finally tried going to sleep around 11:30, only to be woken up at 11:45 by someone coming in for vitals. It seemed like they woke us up every hour through the night for something.  

Friday, June 12th: Dr. Piper's physician assistant (Jeff) came in around 7:30am to check on Rebecca. Around 9:30am, Rebecca was discharged from the hospital, and we headed straight to Dr. Piper's office for a checkup (after stopping at McDonald's for a vanilla milkshake). Bec had a CT scan to check the new discs, and then she had all her bandages removed and the incision sites cleaned. While that was happening, staff went over the medicine schedule with me and gave me a fancy printout with each day's schedule. The medicine schedule is pretty crazy - there are only a few waking hours that do not include medicine. Before leaving the office, Bec had some therapy on her neck. 

After getting back to our condo and seeing the girls, we took a quick nap. After the nap and after looking/studying her medicine schedule, we decided to go shopping to keep Bec active. We went to a huge outlet mall in Ellenton and were there close to 3 hours. Bec felt great and walked around the whole time. 

Here are a couple more selfies from Friday (the swelling around her ears increased quite a bit on Friday since we switched from ice to heating pads):

Saturday, June 13th: Rebecca is feeling great this morning. She didn't have pain meds from 12am-7am but was not in too much pain. The swelling has also increased a little more. We are planning to go into Tampa today and visit a museum of science and industry to keep active for today. 

As a note to anyone that might find this blog before surgery, the hospital provides you with syringes (with an extended catheter) to drink ensure and other fluids. Rebecca used the syringes in the hospital but found that smoothie straws (pink in the pic below) were much easier to use once she was out of the hospital. 

What a crazy week!

We knew this week would be crazy. With our great streak of luck over the past year, the week ended up even crazier than we expected. 

Monday: Today was a full morning of appointments followed by surgical braces. We met Dr. Hobbs for the first time today to go over the therapy he will provide for Rebecca post surgery. Dr. Jackson put the braces on. (And she looks just as amazing with braces on, in case anyone was curious.)

Monday was a tough day, with the reality of surgery on Thursday. Rebecca's mom volunteered to watch the kids for a few hours while we went to the beach. We had a great, relaxing time. 

Tuesday: The first appointment today was at 1pm. She learned how to put bands on the brackets, and Dr. Piper  went over her health history in addition to making sure her splint fit correctly. 

After seeing Dr. Piper, we dropped her prescriptions off at the Prescription Shop in St. Petersburg and headed to the Palms of Pasadena hospital for blood work. 

Wednesday: Today was supposed to be a fun and free final day of the current normal for us. We decided that we would spend the day at the Tampa Aquarium. However, we were about 10 minutes from the aquarium when we were rear ended on the Gandy bridge. We were only going 10-15mph when we were rear ended by some probably going 40mph. We are all sore, and we have quite a bit of damage to our car. But a collision center was able to get the car fixed temporarily so we can make it back home. 

During the car accident, one of Bec's brackets came loose. After our car was fixed, we had to go see Dr. Jackson to get the bracket glued back. We finally made it back to our condo to enjoy a light meal. I'm sure no one will be surprised, but here is a pic of the last real food Bec will enjoy for 3 months (cheesecake with tons of caramel and whipped cream):

Thursday: Today is surgery day! We are hopeful for a complete recovery. Bec was excited today and very relaxed. I can't wait to see her after surgery...

It's really happening...

Last Thursday night (June 4th) we arrived in St. Petersburg for 2 weeks of pre-op appointments, TMJ surgery, and post-op appointments. Rebecca had her first appointment bright and early on Friday morning. That appointment consisted of wax molds and impressions for the splint Bec will wear after surgery. In addition, they did a pretty detailed health history review for their records. We were at the office most of the morning. 

The next few days consisted of some fun activities with the kids planned ahead of the busy upcoming week. On Saturday, we went to the Clearwater Marine Aquarium to see the dolphin stars of Dolphin Tale 1 & 2 (Winter and Hope). That was a huge hit with the kids. 

Sunday, we spent the day at Busch Gardens. We all had a blast and were able to forget about the real reason that we are in Florida. Rebecca's mom was able to travel with us so she could help with the kids (especially after the surgery), and it was definitely nice having 3 adults versus 4 kids at a theme park. 

Reality, and the busy week, starts bright and early tomorrow with an appointment at Dr. Piper's, a consultation with Dr. Hobbs, followed by surgical braces at Dr. Jackson's. Even though surgery itself is kind of depressing, I'm excited that Bec will be able to live more pain free and more normal than she has in years. This week, and the next year or two, will be quite the journey. But I wouldn't choose to journey with anyone else...

Surgery date!

The last few days have been a little crazy. On Wednesday night, Becca and I discussed how the surgery would most likely be in September or October. We decided to start planning for the summer and to put the surgery out of our minds...until we got a call on Thursday around 12:30 from Dr. Pipers office. They had a summer cancellation and wanted to know if we were interested. The surgery date is June 11th...less than 4 weeks away. 

We have to be in St. Petersburg by Friday, June 5th for the start of the pre-surgery doctor visits. Friday will be molds, Saturday will be the day for the surgical braces, Sunday will be an off day (I assume), and Monday through Wednesday will include other appointments and pre-surgery testing. Thursday the 11th will be the big day. Bec will be in the hospital over night and released the next morning. We will stay in St. Petersburg for a week after the surgery, and then it's time to come home...

This has been a crazy ride so far. We moved in December, decided to try a new doctor after moving, saw a TMJ specialist on April 2nd, saw Dr. Piper on May 5th, and scheduled surgery for June 11th. I set up the blog thinking there wouldn't be much activity for the next 6 months, but that was a wrong assumption. I'll be blogging a lot over the next few months and truly hope this is an easy way to keep everyone updated. See ya in a few weeks...

Consultation Appointment

The appointment went great. Dr. Piper is so much different than other doctors...he's caring, thorough, and willing to answer any and all questions that his patients have. We left his office close to 10pm last night and didn't feel rushed at all. 

To give you an idea of Dr. Piper's schedule yesterday...there were 3 brand new patient consultations, meaning 3 new patients arrived by 7am. Each new patient started with a CT scan in the office, molds, wax bites used for an MRI later in the day, tons of pictures of the mouth, and an initial visit with Dr. Piper. Dr. Piper also starts seeing his postop patients at 8am. I would guess he saw 10-15 postop patients before noon. In between seeing his postop patients, Dr. Piper also comes back to see the 3 new patients for a further exam that gives him a better health history and allows him to see the current jaw situation. At 1pm, Dr. Piper has follow up phone conversations for patients that have been through prior consultations. After those phone conversations, he starts the longer health history visit with the 3 new patients, followed by the full consultation and treatment plans. Yesterday sounded like a routine day. In other words, Dr. Piper routinely finishes his day on Mondays and Tuesdays (days that he sees new patients) around 10pm. But, remember as I mentioned earlier, he did not rush or make us feel bad for asking additional questions. 

Rebecca's day went as follows: we arrived at 6:50am and were the 2nd patient; around 7:15, she was taken back for a CT scan, molds, wax bites, and an initial, short visit with Dr. Piper; around 9am she was finished with these preliminary steps; around 11am, she had a full health history done by Dr. Piper's physician assistant followed by a 15-20 minute visit with Dr. Piper; around 12:15, she had to redo her molds because they didn't take very well (mainly due to the fact she couldn't open wide enough); at 12:45, we headed to the MRI office for her 1pm appointment; at 1:15, she was called back to get ready for he MRI; the MRI started around 1:45 and was complete around 2:30; once we were back at the office around 3, we watched a 35 minute video explaining the evening consultation with Dr Piper; around 3:45, we were given a break until 6; we arrived back at the office around 6 to wait for the evening consultation; we met with Dr. Piper starting at 7:05 and left his office around 9:25; we met with the patient coordinator after that meeting to discuss surgery scheduling and costs in addition to what they will do with insurance companies; and we finally arrived back to our hotel room at 10pm, a whole 7 and 1/2 hours before we needed to be packed and ready to head to the airport. 

So...what did we find out? We were given tons of information last night. We have 5 pages of handwritten notes from last night's consultation, and we will receive a full report within a week containing all tests, the MRI, and Dr. Piper's dictated notes. We went into the consultation hoping that Rebecca's joints were salvageable. We found out the previous night that the condyle on each side needed to be at least 50 square millimeters in order for Dr. Piper to do the surgery. Luckily, boths of Rebecca's condyles are larger than the minimum requirements. I was much more relaxed after finding out about those measurements. Here are the highlights of what we found:

- As Dr. Holmes told Rebecca, Dr. Piper agreed that there was a trauma early in her development years causing these problems. Dr. Piper thinks the trauma happened closer to 5 years of age. 

- Rebecca's left jaw is the size of a 5 year old's jaw. This is the case because of the trauma at a young age. The trauma caused damage to the growth plates, meaning her left jaw stopped growing at that point.

- Dr. Piper is cautiously optimistic that Rebecca has enough bone that has not degenerated - meaning that he hopes no rib graft procedure would be necessary. 

- Dr. Piper has a 98% success rate with his surgery. If Rebecca's bone still degenerates after the surgery, she would be in the 2% and the only option would be a total joint replacement. The total joint replacement is only done in Dallas, Texas and isn't a lifetime solution to someone in their 30s. 

- Most jaw doctors just want to complete a bite surgery without trying to correct the initial joint problem. Because of this common practice, the pain does not go away and the problem is not solved. A bite surgery involves cutting the jaw in several places and realigning the jaw with screws. This is a major operation with more complications than Dr. Pipers surgery. 

- Dr. Piper feels that he can solve the pain problem with his fat graft surgery. Other surgeries might be involved at a later date (most likely 2+ years later), but that just depends on how well the fat graft works in the jaw. 

- The fat graft surgery will allow Rebecca close to normal function in her jaw. It will not mean that she looks different or that her jaw bone will be a normal size. 

- After surgery and after the extensive 9-12 month healing process, Rebecca will need braces to adjust her bite. 

There is a ton more information and a ton more that we learned, but those are the highlights. 

So where do we go from here? Rebecca thinks Dr. Piper is amazing and thinks this procedure is best for her. After 20+ years of trying to manage her pain, finding a solution that has such promising outcomes is great. Many people have stopped us and asked why we are rushing into this without finding another opinion. This isn't a first opinion. Or a second opinion. Rebecca started seeing doctors in St. Louis 20 years ago, followed by a specialist in Decatur that made 3 splints for her over the years in order to manage pain, in addition to 2 doctors in Bloomington that both agreed Dr. Piper was her only option. There are other places we could check. However, all of these other options will lead to the options we've been given. If we would explore every option presented to us, we would be spending a lot of extra money (without being reimbursed by insurance), time, and energy that just isn't there. We appreciate options that have been presented by others, and we have honestly looked into those options. There is tons of research available on the Internet. However, Rebecca is physically and emotionally drained from this process and can't imagine trying to find other doctors, especially knowing we will eventually come to this conclusion. 

We don't have surgery scheduled right now. The summer months are booked solid for Dr. Piper. There is still a possibility Rebecca will be able to have the surgery during the summer due to cancellations. We will know more in the next few weeks and can hopefully secure a date in order to start planning. 

We are excited, relieved, anxious, and grateful that we have this opportunity. This is the beginning of what we still hope is a better future...

Consultation Trip

Monday was a travel day to St. Petersburg, Florida. We left home at 7:30am and drove to Chicago for our flight at noon. After a short layover in Charlotte, North Carolina, we arrived in Tampa around 6pm. 

We had dinner with someone Rebecca met on the Jaw Crew Facebook page - a support group for Dr. Piper patients. Kathleen was in town for her 3 months postop appointment. It was great to meet someone that had recently been through the surgery. We badgered them with questions for almost 3 hours. It was nice to meet Kathleen's husband, Tyler, and her mother as well. We had a great dinner with them at Red Mesa Cantina. 

After just a few hours of sleep, it was finally appointment day! We had a quick breakfast at the hotel and walked a few blocks to the Piper Clinic for a full day of testing and consultations. We are excited for a plan that will bring relief from Rebecca's pain and a future that is full of possibilities. I will let you know what we find out...

Initial Consultation

After 4 phone calls to the Piper Clinic in St. Petersburg, Florida, we have finally scheduled an initial consultation. Appointments are normally scheduled 4 months in advance, but we were lucky to call when they had a recent cancellation. Our initial consultation is scheduled for May 5, 2015.

I thought I would start this blog to document the TMJ journey my wife, Rebecca, has started. After meeting with a TMJ specialist on April 2nd and finding out that there were limited options, we started researching to find people who had been through similar situations, specifically other patients that had stories on their surgery and recovery related to the Piper Clinic. We successfully found 3 other blogs related to these surgeries/recoveries, and they were extremely helpful and provided a lot of information. I won't say that we are any less anxious about the upcoming months, but the blogs we found at least provided answers that we needed at the time.

Rebecca's jaw has continued getting worse, even in just the 2 weeks since seeing the TMJ specialist. Many foods are hard and nearly impossible for her to eat. She has been living on yogurt, soup, and mashed potatoes. The TMJ specialist did a lot of testing on her jaw during the consultation, and I assume that's why she has had additional pain and problems eating the past 2 weeks.

We have a long journey ahead. An initial consultation, 2 weeks in Florida for surgery and post-op care, a soft food diet for Rebecca for many months, appointments every 3 months, braces, and I'm sure many more surprises in the future. I hope this blog serves as a good way to keep everyone updated on the progress of the surgery and recovery, and I hope that others are able to find this blog when they have a similar diagnosis, similar fears, and a similar hope for a full recovery.

Hope

April 2, 2015: So many feelings today...anticipation of finding an answer after a diagnosis 20 years ago; being overwhelmed at what seems like the only option; frustration that profits and money are more important than health and a pain-free life; and excitement that we finally feel like we've found an answer.

20 years ago my wife was diagnosed with juvenile rheumatoid arthritis and started having problems with her jaw. Naturally, the TMJ in her jaw got lumped into the arthritis diagnosis. Some doctors thought her jaw stopped growing. Some thought she should get a titanium replacement of some sort. Some thought she should get braces to fix the misalignment. Some thought breaking the jaw to get it to grow again might work. At 15, the pain wasn't consuming every day life, so a treatment plan was put on hold.

Fast forward almost 20 years...a husband and 4 kids later, I see my amazing wife unable to eat many foods she loves, sometimes unable to talk well in the mornings, and sometimes with a migraine due to jaw problems. (I would just like to say, most of her friends probably don't know much about this because she is amazing and doesn't complain much...and doesn't want people to worry about her) After moving to Normal, I decided to look into other treatment options...after all, medicine has improved over the 20 years since her diagnosis. And that's where today comes into play...

Today held the anticipation of finally meeting with a TMJ specialist to talk about surgical options. We met with a very knowledgeable TMJ specialist in Bloomington today that laid out a plan that seems right. A plan that involves extensive surgery, but a plan that gives the hope of minimal future pain. The doctor provided answers that seemed a little surprising also.

We found out today that the jaw problems were not a result of the arthritis but rather the result of some traumatic injury to the jaw. I'm sure it would be hard to figure out what specific injury caused this specific problem, but something caused both of Rebecca's discs in her jaw to become dislocated in her development years. No discs, and bone constantly rubbing against bone means that at age 32, Bec's left jaw has gradually grinded away - meaning that only 25%-40% of her left jaw bone still remains intact. If left untreated, the doctor said in 5-10 years, she might not be able to even open her mouth.

The overwhelming part involves the specific procedure that will need completed. I will spare the details in this post at least, but most doctors won't even touch trying to fix that problem. The answer to that question became apparent today as well...

I can't say that I'm different than anyone else, and I remember choosing my occupation at least partly due to my estimated future income potential. Most people interested in dental work wouldn't be interested in pursuing a TMJ speciality because insurance companies think it's a cosmetic procedure and won't pay a dime for anything related to TMJ. So if TMJ specialists can't earn a decent living because people can't afford to pay them for their services - who would want to specialize in TMJ related surgery? Insurance companies are too concerned with profits. They've shut down the initiative of many doctors by not covering a surgery that alters someone's entire life. The few TMJ specialists that consider surgery an option aren't powerful enough to lobby against insurance companies to ensure this is a covered procedure. So medicine is ultimately a for-profit business, and the well-being of patients suffer. Calling a TMJ surgery that my wife needs a cosmetic procedure is ridiculous. In 5-10 years if nothing is done and she can't eat, you're saying a jaw problem is cosmetic? Bec does have the excitement of a future without pain, but that is something that will cost us (people who pay thousands of dollars a year on medical and dental insurance) six figures plus travel expenses...because insurance companies only care about profits and are willing to throw ethics out the window.

But there is excitement. We will be seeing a doctor in Florida for a consultation about a proven surgery. Sure, the surgery and recovery sounds scary. But life without pain, life without migraines from a jaw that is 60%-75% gone, and life being able to enjoy foods that you love is worth the setbacks.

(I love you, Rebecca! I think you are amazing and one of the strongest people I know!)