Would you like some cheese with your whine.... | Arthritis Information

Hey guys...

Still feeling a bit rough. Obviously, the jaw is still bothering me, but I think a flare is brewing as well. No big surprised since the last week and a half have been rather rough.

I am sooo tired of soft/liquid food. The muscles of the jaw on both side are so tired, and the joints are still swollen as well. I thought it was starting to feel a bit better, but my son managed to head-but the right side. I bent down to kiss him goodnight and he popped his head up to give me one as well. NOT GOOD!!

I got most of the stitches out last week and the last few I get out on Tues. I am also doing PT 3 days a week. Not really helping yet.

BUT...good news......My neck and upper back feel great. I am serious...after years of not being able to turn my head around and back out of the driveway-I can do it. I can actually lay my head down on the pillow without it hurting. So, the surgery did have that benefit. That alone is enough to make me hug the surgeon when I see him on Tuesday.

Ok...wanted to end on a high note. Better end this post now before I start the neg.....

rocckyd.. glad to hear you 're doing so well..

what..... exactly...was the surgery for?

I have difficulty getting comfy in bed w/ the pillow due to cervical spine issues.... Is that what was going on for you? I'm sorry I don't remember exactly.

It was to "clean out" the jaw on either side. For whatever reason, the RA decided my jaw was the place to be. When the OS went in he found my left side was totally out of joint due to all the scar tissue and swelling. Rt. side wasn't so bad but still a ton of scar tissue and swelling as well. The jaw was also affecting the neck and back since those muscles are all connected. ooh.. wow.. what a mess!! So glad you had that done..

glad you're doing so much better too........... quick and speedy recovery!!!

Rebecca-
I'm glad to hear over all you are happy with the out come of your surgery! I can totally understand you being tired of a soft food diet. Is there a silver lining and your clothes are feeling looser these days?
Leave it to one of our kids to accidentally put us out of commission!
Hope you start feeling considerably better soon!

Sorry to hear about the head-butt. I hate when one of my kids do that to my jaw. It is pure pain! Makes you just wish it would have knocked ya out.

I hope you start feeling better soon.

Much hugs

Roccy, glad to get back from vacation and see that your surgery is done and you are healing up. It goes slowly, hang in there. Wish I could come up with some interesting soft foods but I bet you've thought of them all.Rebecca - well, good and bad, but at least the worst is over for now, and in the long run it will all be better. Hang in there, we all understand how hard it is - and everyone has a different journey on this road we are all on together. Huggles ~~ CathyThanks guys for your kind words. One of the main problems is that I went back to work too early. Dr. wanted me out for 2 weeks which would be this upcoming wed. I ended up going back on Fri. It was a half day since teachers had an inservice and I just showed a movie. In a perfect world I could take off the whole time but I am totally out of sick days. My paycheck will be half its normal amount.

The kids have been great. Even the ones that I seem to go round and round with regarding behavior were so glad to see me back. I always tell them to never complain about their teachers since you never know who you could get in their place!

My words don't come out quite the same either. My jaw doesn't move the same so some letter sounds are a bit off. Basically for now it just opens-15cm whoo hoo. I can't move it side to side and I can't move the lower jaw out at all. You don't realize how many ways you move your jaw to eat/drink until you end up spilling all down your front. Classy

On the postive-gotta always try to end postive...it is snowing today. We are supposed to get around 5 inches so that could close school tomorrow. Yeah....a day off with pay!!! This is actually our first snow all winter. Crazy since I live in the mountains. We were giving up hope. My PT is hoping to be able to come over tomorrow so we can take my son sledding. Obviously I can't really and he has been praying for snow all winter. Bring on the white stuff!!!!

Hi Rebecca, sounds like you're right on the recovery schedule. It's tough to recover because we ALL want instant recovery. Did you lose weight? If you did, it was worth it, unless you're thin to begin with. I always try and find the silver lining, I know it's there. It sounds like surgery really helped with your neck issues. I'm happy to hear that you're recovering well and that you see results already. Take care and have fun in the snow. Lindy LinB2009-03-01 11:03:50I hope things get better quickly! I know what you mean about turning in the driveway. My jaw has been making nasty noises recently and I'm worried.Hey Rebecca, I almost missed this post as I have been outta pocket just a bit. I am glad to hear you are doing so well. I know you are sick of this all, but you can see the light at the end of the tunnel huh? Have you been off the MTX? If so, when do you get to go back on?

Keep looking for the positive, silver lining, light at the end of the tunnel! I am still humming for you!
Hello Rebecca, I send you my best wishes for a sterling recovery and lifetime relief from prior issues with your jaw: RA strikes us in the most peculiar ways, your determination to rise above this setback is to be applauded and celebrated. Brava! Saw the surgeon today for the 2 week followup....

He is very happy with the left side, not with the right. Crazy since the left had more damage and more to remove during the procedure. He did warn me that the next two weeks will probably have an increase in pain. Basically it's like when you have a scar. As it heals, the tightens up. That is what is happening inside the jaw. Can't wait. He is worried about the right side since it is more painful and the muscles are very tight(according to him). The main concern right now is the the adhesions reform. That is why I keep going to PT for ultrasound and exercises. I go back in 2 weeks and we'll have a better idea then as to what is going on.

Still a very limited diet...AARRGGHHH.

Oh well...That what doesn't kill us makes us stronger...or makes us willing to kill for solid food :)

Rebecca, you have the right attitude, so you will prevail. All I can think of is what a great way to be forced into losing weight, as I need to drop a good 15 lbs. Keep us informed, as we all have jaw involvement as a possibility and you sharing your experience is very helpful. Thank you.

Well, things are not going quite as well as they could be jaw wise. My left side(which had more damage) is healing nicely. The right side, not so good. It is more swollen now then it was post-surgery. My PT called the surgeon on Thursday to talk things over with him, but he is out of town until next Thursday. My PT has done untrasound, e-stim, and TENS but the inflammation won't go down. The range of motion is also decreasing-not good.

My PT thinks that the RA is just going to town in there. Basically, she feels that my immune system-instead of healing the area, is "over-reacting" and also attacking the tissues. Hopefully the surgeon will have some ideas. Needless to say, I am still "enjoying" my Ensure and Cream of Wheat. Yummy....

This post has been edited by roccky: Today, 03:33 PM

Rebecca, don't the docs always seem to be out of town when you need answers! I am sorry you are still having the issues with the right side. When do you start back on your Rituxan, or are you already?

I am just craving salt! I was licking Pringles earlier!Awwww I'm sorry you still can't eat solid food! That must have gotten really old by now. Sure hope things start progressing faster in the recovery department for you!

Jaw surgery is a rough one. I think orthopedic surgeries are much harder to recover from than all my abdominal surgeries (I'm getting emptier by the year). I've had bad TMJ twice, once the dislocation lasted 10days.. awful and yet it did stop without surgery.

I also had a very bad stiff neck for over a year that was cured by other surgery, in my case, on my shoulder. Everything is so connected.

Can you avoid weight loss by drinking blended shakes with fruit, yogurt, protein powders, etc added? How do you drink? Can you use a straw? I hope that gets easier.

And about that head-butt... my little dog did that to me about 6months ago and I saw stars!

I hope your recovery goes smoothly,

CathyMarie

Working isn't really helping either. I am giving the kids notes of viruses and bacteria this week. I have to do it...they have spent the last 2 weeks working on their own and watching movies. At least tomorrow will be fairly easy. I have an Infectious Disease dr. coming to talk with them.

Thanks for all your kind words.

Well, the surgeon talked to my PT. I will see him on Tuesday-that will be one month post surgery. Right now he is thinking of moving the jaw while under general anesthesia in his office. Not nearly as complicated at the open joint surgery I just had. Anyway, he would move the jaw around to break up adhesions that have already formed since the Feb. procedure. Then, back to PT I guess.

This is getting really old.....

oh you poor thing! So sorry things aren't getting back to normal as smoothly and quickly as we all hoped it would be for you. Feel better soon![QUOTE=rocckyd]I am just craving salt! I was licking Pringles earlier![/QUOTE]

I'm sorry things aren't going so great for ya. I thought the surgery was going to help you out and provide the relief you needed. This is a shot in the dark, but have you tried baby food? I know it's bland, but if you added some salt or spices it might not be too bad.

I hope things get better quickly. Have a superfantastic and as comfortable as possible day!

Rebecca, I am so sorry you are having such a hard time. I really admire you for your attitude and for all you have continued to do in spite of all you have gone through!

You are really a great inspiration to those facing a challenge with their RA. I hope your path is smoother and you catch the breaks you so deserve and.... you can eat Pringles instead of licking them! Oh my goodness Rebecca, I am so sorry. Surgery again?

I hope you don't mind, I have a question for you. So I had what I thought was a "normal" TMJ disorder for years. I would have popping noises all the time, and occassionaly my jaw would get stuck in one position, but it had been a while. Usually it got bad only when I chewed gum, which I knew not to do.

Then RA...then 9 months later my huge jaw flare. So immediately my jaw went from popping noises to a tiny little series of grindy/crunchy noises...not loud but disgusting to listen to. Now I just started Humira and I can't tell if it's getting better or worse, because the noises are changing. Well the soft grinding noise is still there, but it's making some really sharp pops, not as loud as before and sort of smaller in scope.

Were you ever able to tell what was going based off of the noise? Did any doctor ever give you guidance? The oral surgeon who took the x-rays was like "yep, it's RA, you have erosions, I can't do anything for you, go on biologics." So eventually I am going to need to follow up with someone else a little more willing to get involved. I just imagine little bits of jaw floating around and I don't know what to do. I don't want to do anything for now, I'm sure you understand now more than ever, I just don't want anyone touching it...

I have found that the noises didn't always go along with the pain/damage.

It is definitely a complicated situation. I don't blame you for wanting to wait. I actually got by for a number of years using a splint at night and adjusting my diet as necessary. Then, for whatever reason, the RA decided to take up camp in the jaw joints. Finally the MRI showed such severe damage that something had to be done. It got to the point where the jaw was just no longer functioning.

If the feeling is sharp, it is probably your meniscus slipping back and forth. This is like a little pad that cushions the joint on each side. It can be very painful as it slips back into place. But, you can actually function without the meniscus. Your muscles learn to pick up the extra load.

PT worked for a bit as well. So much of the TMJ pain involves muscles. My PT taught me a number of tricks. But, I can't stress enough seeing somebody who knows about the TMJ. My surgeon is actually the only one is this area who does this type of surgery(I am taking within hours of here...) You might have to be willing to drive to get the care you deserve. Surgery should definitely be the last resort. According to the dr. and what I have read, the TMJ is the most complicated joint in the body. But, there are times it needs to be done.

Katie-Have you looked into PT? It might buy you time and some comfort until the biologics kick in. My problem was that we went up the biologic ladder and none of them slowed the damage in the jaw area. Maybe you will luck out.

Where are you in the south? You can PM me if you want, but I am south as well. I might be able to help you out in the dr. department.

Thanks everyone for you kind thoughts/words. Even my students picked up on how uncomfortable I was today. I would scream-but I can't open my mouth wide enough. So....here is a pathetic wimper.......

But, when all appears lost...remember-ITS FRIDAY!!Saw surgeon today. He was impressed(or should I say surprised) at the lack of my jaw opening. It has decreased since I saw him 2 weeks ago. Also, still obvious inflammation and tightness along the rt. side. He threw out getting another MRI and some other ideas but decided to manipulate the jaw himself first. He did just see the inside of it up close and personal a month ago, so the joint could have only changed so much. This is kinda what he did before Thanksgiving. It can be done in office-basically he'll put me under and he will move move the jaw around to break up adhesions and scar tissue. It will also give him a better idea of how much the jaw can really open and move. Right now, everything is so tight-obviously I am guarding it pretty severely. And, no more PT until it he moves it around again. He asked if it is helping and I said not really. I can see the therapist @4 and have ultrasound and TENS and be back @7:30 the next morning and it looks the same-sometimes even worse. So, now it's the waiting for insurance game. The plan is for next week. He said a Friday would be ideal so I wouldn't have to take off work again and would have the weekend to heal.

I should have asked what would happen if this didn't work. I guess my biggest fear is that this is as good as it gets. Depressing. Right now my jaw open around 15cm. This is the space inbetween the teeth. For most people-it is around 40cm.

I did take the day today-not that I have the days. I am hoping a day of Flexeril and pain killers will at least loosen it up and buy me some relief for a bit.

The saga continues.......

frustrating! No more PT so I guess that means you can't try to exercise it to get it opened more either. I could picture myself opening and closing my mouth...

Are you going this Friday? Best of luck to you!

Probably not this Friday since insurance has to respond. They hate TMJ issues and often drag their feet. Actually, according the to dr, many of his patients are denied by insurance. It's because the joint is not claimed by dental insurance or medical insurance. Each one thinks the other should cover it. Luckily, I am coded as RA, not TMJ. Plus, there is not really any training in the area. No certifications for dr.'s who treat it. A dentist can claim to know the joint, but it is not really a dental problem. My doctor's speciality is oral and maxillofacial pathology. That is one reason why there are so many horror stories online involving people and TMJ issues. They can have their teeth leveled(basically grinding them down), capped, bites adjusted, and joint replacement when not necessary. All of this causing crazy complications. Now, I am obviously having complications-but the overall picture is improving. The left side looks and feels wonderful. It hurts by the end of the day, but that is due to picking up the slack from the right. As we all know, RA seems to always want to make life a bit more complicated. I call it the "scenic route to healing".

I will end this message the way I have ended a few in the past. If you are having TMJ issues, please make sure you see someone who is truly knowledgeable. As we were talking, my dr. mentioned ways that these problems were solved in the past---awful solutions. He said that there are usually only a few dr.'s in each state who have really studied and understand joint. Even knowing his background, I did get other opinions. All deferred to him as the one to trust. I don't want to offend doctors by getting other opinions, but he encouraged it.

Katie G---how are you doing????

Wow...I admire your fortitude and attitude!
I sent you my very best wishes for continued improvement and a speedy resolution to your complications. "Scenic route to healing", indeed!

Cheers, Shug
Well, surprise of all surprise...I will be having the procedure done this Friday. Talk about a quick turnaround!Well I hope you get relief!!!!!!!Rebecca, I really hope this is the answer for you. Hang in there, girl! Good luck Rebecca! I am in SE Tenn, but see an RD in Nashville at Vandy. My endocrinologist is also there now. But I am 2 hours from Nashville, Atlanta, Birmingham, and Knoxville, so...they are all options. I'm sure you can figure out where I'm from...just watch Jimmy Fallon tonight ;)

My jaw is weird now. It appears less swollen, but it is hurting more when I eat recently. The noises are out of synch from when I open close, it's almost like it's making a noise on a lateral move. I can deal with the pain, but mostly because Mobic works well, and things like gum or bagles I can't do of course. Most of my day is spent reading/writing and not talking, but I have more problems the more I talk too.

I guess I should at least plan to get an MRI. I may talk to my RD about that. To at least get a baseline. I don't think I've ever had one of my jaw, despite all the problems I've had. I feel like my bite is starting to change.

Anyway, thinking positive thoughts for you, good luck on Friday!

KatieG2009-03-17 17:55:59

Good luck Rebecca and Katie too.... jaw troubles sound horrible.

Good advice about having your condition listed as RA instead of TMJ.

CathyMarie

thanks guys.

I just found out that it won't be done until 11:30 in the morning. That means I will have to go from mindnight till then without food/drink. You never realize you are hungry/thirsty until you aren't allowed to eat/drink.

Oh well......

My very best wishes for positive results after your procedure. May it be quick, pain free, and advantageous, Shug Good luck this morning!!!!!Good Luck, Rebecca!Thanks guys. I guess it went ok. I was obviouly not really a part of the whole procedure!

Jaw, of course, feels a bit rough. Kinda like I got punched around both sides of the ears. He sent me home to take pain meds regularly for a couple of days. He said allow at least 2 days of recovery and then back to light work. That works for me since it is the weekend.

He always sends me a copy of his notes so I can take them to my rheumy and pain dr. I'll get those on Monday so I'll know more about what he thinks. He did put my back in pt for a month. Joy.....

Rebecca, I am glad things seem to have gone smoothly for you. I hope the meds keep you comfy and relaxed and you have a nice, quiet, smooth weekend. Rest up this weekend- hope you're feeling better soon! Oh I'm so sorry you are going through this again, feel better soon! Rest, rest, rest!Becky, hang in there, we are pulling for you ~~ Cathy

Feeling pretty good today. I know that tomorrow and Sunday will be harder. All the nice meds you get during the procedure can usually carry you through the first day. Then everything tightens up while you sleep.

I do wish I knew what the problem was. I talked to my friend today(PT) and she talked to the dr. yesterday. He said if the thought it was more muscular than he would treat it one way, scar tissue another. No clue.... I'll just have to read the dr.'s notes on Monday and see what it says. I just don't want another open joint surgery for a good long while.

So, got a few good movies in the mail today(luv netflix!) and will do absolutely nothing tomorrow. My parents have my son. They are actually looking forward to this weekend. He has soccer(gotta luv 5yr old soccer) and then McDonalds with, his qoute-"The most super tunnels ever!" My dad built my nephew and my son a fort in the woods. Really it's only about 10ft in the treeline but they think they are hidden from sight. So, they'll be painting that this weekend. I am very blessed to have them here. RA sucks but it has allowed for my son to have a great relationship with his grandparents.