9 months down

Bec is now 9 months post-op. She had a checkup with Dr. Piper on March 15th and received a great report. Dr. Piper was pleased with her CT scan and is still hopeful that no further surgeries are necessary. One side of her jaw still isn't as strong as the other side, so he wants her to continue the current vitamins in hopes of strengthening the condyle area. Depending on how the jaw continues healing, the only other surgery needed would be a bite surgery after ortho is complete. As I mentioned, Dr. Piper doesn't think that surgery will be necessary. 

After the morning appointment with Dr. Piper, Bec was able to get her surgical brackets removed. Per Dr. Piper's request, 6 brackets were left in place so the splint could still be banded at night until the orthodontic braces appointment. 

No brackets! That only lasted about 48 hours. On Thursday the 17th, Dr. Bowers placed normal orthodontic braces while expecting a full 2 years before Bec's bite is corrected. Braces will help fix the bite that's changed because of the surgery. In order to ensure the fat grafts stay successful, an even bite is necessary. While Bec is wearing braces, she wears rubber bands on both sides to take pressure off the fat grafts. Right now, Dr. Piper wants her to wear them 12 hours (mostly while sleeping). 

While we were in St. Petersburg, we were able to catch up with Natalie and Kent. Natalie had surgery the same day as Bec and is doing very well. They've kept in touch, so it was great to be able to meet for dinner. Ceviche is a great restaurant close to Piper's office:

It's been a crazy, life changing 9 months. It's awesome that Bec was able to find Dr. Piper. She's only had a few migraines in 9 months. Prior to surgery, she had a migraine a few times a month. Being nearly pain free is a great improvement. The next appointment in St. Pete is in 6 months. Life is finally becoming normal after this crazy year. 

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.