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Old 11-28-2010, 08:47 AM   #121
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Re: Bilateral joint replacement/rheumatoid arthritis

Hey all...

This thread has gotten busy once again.

Good luck to those of you looking at TJR as your option. Make sure you get many many opinions before you go down this road. If it is the correct option-you'll be amazed at how much better you can feel.

TMJ wise-things are looking pretty good. The other health issues have kept me very busy. I've been inpatient 3X over the last 2 months. Crazy. The RA inflammation is messing with my joint rehab. As we continue to decrease the prednisone, the inflammation increases. I've received 3 infusions of my new RA med. I love the port-a-cath: makes infusions so much easier. Hopefully the meds will kick in and decrease all the inflammation.

Hope you all had a great Thanksgiving. Let the Christmas fun begin.

 
Old 11-28-2010, 11:01 AM   #122
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Re: Bilateral joint replacement/rheumatoid arthritis

Hi Rockkyd,
Good to hear that your TMJ recuperation is going well, although a little slower than you would like due to the RA issues. My mother had a port and it was so easy for her to receive the necessary meds especially antibiotics. It was nearly impossible for care takers to find a vein and then so complicated due to the sclederma skin. I am sorry that you have been hospitalized and can't seem to get ahead of the battle with the RA inflammation. You still amaze me with your mental strength, positive attitude and endless fortitude there must be days that seem very trying indeed. God bless you as we enter the season for blessings and priceless gifts.
I continue to wait to hear from Mayo Clinic on the possibility to be included in the TMJ hemijoint replacement study that is being conducted by Dr. Gene Keller. I don't expect to hear anything more until after the first of the year.
Take care and keep in touch.
c

 
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Old 11-30-2010, 10:56 AM   #123
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Re: Bilateral joint replacement/rheumatoid arthritis

Hi all! I hope everyone had a nice Thanksgiving.
I went to get a second opinion from Dr Piper before agreeing to the joint replacement. The appt was very interesting and he proposed a bilat fat graft with muscle flaps, discetomy, scar tissue removal, and recontoring of the bone, plus 2 years of braces with bite correction surgery in the future. I have been thinking about this since I saw him and honestly do not feel comfortable with that option. He mentioned a possibility of further surgeries if the graft doesn't take, and a high possibility of further bone damage (I have severe arthritis). That just sounds like a recipe to go back into the cycle of surgeries I am trying to stop!!
My only concern with my current drs plan (left TJR and maxilla correction sugery) is with my right joint, which I've only had 2 arthrocenteses on in the past. The disc is severely displaced and damaged. I do not see it as a "replacement candidate", but am so hesitant to try the other open joint procedures I have had on the left. Any suggestions on what has worked for yall?

 
Old 12-02-2010, 07:53 PM   #124
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Re: Bilateral joint replacement/rheumatoid arthritis

Hi Navymid,
Gosh it is so hard making such difficult decisions when the experts disagree on treatment. I got three opinions during the last year. Two concur on bilateral joint replacement surgery, the third opinion says it's too extreme and he recommends a hemijoint (fossa) with reconstruction of the condyle. I am going with the third opinion. I know you must feel really confused and floundering for an answer. I am sorry there is no simple answer to this problem for any of us. The procedure Dr. P is recommending sounds really complicated, but my oral surgeon also suggested using fat graphs which supposedly packs the surgery areas and allows for slower healing and less scar tissue. I understand fat deposits is not uncommon in joint replacements of any type. Let me know what you decide. I am interested and again sorry you have mixed opinions.
c

 
Old 12-09-2010, 08:38 AM   #125
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Re: Bilateral joint replacement/rheumatoid arthritis

Sorbil,

Thanks for the reply. I decided to go with my current surgeon's reccommendation of the total replacement (TMJ Concepts) and a maxilla surgery at the same time to correct my bite. His plan just seems much more definitive whereas there are so many "what if's" and issues that Dr P said had a high likeliness of complications in my case. I am having to get braces to correct my bite changes before the surgery and will get them put on next week. The ortho is estimating 6-8 months of braces before the surgery then 8-12 afterwards. I hope it goes by fast!

 
Old 12-15-2010, 09:27 AM   #126
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Re: Bilateral joint replacement/rheumatoid arthritis

Hello Everyone!

I know it has been quite sometime since I posted about the surgery and have not written since. I guess i've been avoiding checking the board due to the anxiety that was secretly building up to the surgery date. But the surgery finally happened on December 4th, 2010.

I'm exactly a week and a half down. The surgery went really really well. The first 3 days were a breeze as it was pretty much a blur with all the medications and anesthesia. I was in the hospital for 4 days. The 4th day was the hardest as this was the day where they weaned me off of the MAGIC pain relief button. I was getting Dilauded via IV and just had to push the button to get pain relief. When they finally decided to wean me off of it, it was absolute hell. It was misery and I swear they should have a better/smoother plan when transitioning from IV to oral meds. Once they finally got me somewhat comfortable I was discharged and the couple days after that were horrible. i had to make sure I was on top of taking my meds or else I would be in pain. On the 5th day I experienced the worse experience yet so far. They were like muscle spasm/jaw clenching/grinding tightening I had never experienced before that would only come and go as they pleased. It happened twice and I'm hoping they never come again. It was a feeling of not being able to control the movement of my jaw. It chose where i wanted to go for ranging from 5-25 mins.
I definitely went through a phase of regretting the surgery and wishing I had thought about it more and more because of the pain I was in and how uncomfortable I was and having issues adjusting but I have to tell you once I got through those couple days it completely turned around. I am so happy I had the surgery. My boyfriend and family did a great job of rooting me on and saying positive things to me to encourage me about recovery. And I reminded myself that every day that goes by, every second, every minute was only towards more of my recovery. And Now i'm so glad i had the surgery. The hard part is over and now the new beginning is to come. I have my 2nd doctor appointment tomorrow post discharge and I think they will be teaching me how to remove the rubberbands from my arch bars so I can eat. I'm still eating liquids but only bc the rubberbands are in the way otherwise i can tell I could eat anything. Talking confidently took a week and a half. My advice to anyone is to stay positive, the first week is the hardest part, sleep/rest as much as you can to recover and rejuvenate and also to kill time I'll keep you guys posted...my excitement is just now waiting for these arch bars to come out which probably won't be for 4 more weeks. Can't wait!
Happy Holidays everyone and again thanks for all the support!

-Kristine

 
Old 12-17-2010, 05:01 PM   #127
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Re: Bilateral joint replacement/rheumatoid arthritis

Kristine,

Glad to hear that things are going good now, and sorry to hear about the rough time you had after surgery! What a nice Christmas present- new joints!
Be sure to keep us updated on how the eating is going!!!

 
Old 12-29-2010, 07:23 AM   #128
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Re: Bilateral joint replacement/rheumatoid arthritis

I am so sorry to hear you may be facing bilateral total joint replacement surgery. I have actually been to VCU in Richmond a few times for Artroscopic surgery. I am now seeing a surgeon out of Baylor Hospital in Dallas, Texas. I had bilateral total joint surgery in October of 2009 after undergoing a Lefort 3-piece in 2005, Arthroscopic Surgery/right TMJ joint 2007, Lefort 4-piece combined with lower jaw in 2008, and finally bilateral total joint surgery in 2009 using TMJ Concepts.

I had 15mm ROM since my first jaw surgery in 2005 that really never has improved. I did achieve improved ROM following my Arthroscopic surgery in 2007 at VCU, but this was short lived and only lasted for a few days. I did obtain increased ROM for about 3 months folloiwng my bilateral total joint surgery, but is actually down to only 3mm to 5mm now. I am on three different meds for pain. So really do your research and ask lots of questions before considering TMJ Concepts joint replacement surgery. I will be heading back to Dallas within the next month to possibly undergo another surgery to determine what is wrong with the prostheses.

As far as having your surgery in two parts, that really depends on the surgeon and what they feel comfortable doing.

 
Old 12-29-2010, 12:54 PM   #129
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Re: Bilateral joint replacement/rheumatoid arthritis

For the first part he went in to clean out the diseased tissue and bone. He also wanted the pathology report. We've always assumed it was RA causing the fusion, but wanted to make sure. The 2nd surgery was for the joint placement.

 
Old 12-29-2010, 04:02 PM   #130
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Re: Bilateral joint replacement/rheumatoid arthritis

I think this is a good move to ensure there is nothing else going on before doing the joint surgery. Dr. Wolford found suspicious tissue during my joint surgery, but unfortunately, a complete pathology report was not done because he stated he didn't have enough tissue sample. So now I sometimes wonder if my present complications may have something to do with this suspicious tissue sample since complete testing was not done.

 
Old 01-27-2011, 07:21 PM   #131
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Re: Bilateral joint replacement/rheumatoid arthritis

So things are still moving along jaw wise. I still have a ton of swelling. After having a very high white cell count combined with the inflammation, my primary care dr. ordered a CT scan. He wanted to check for infection. Thank goodness it came back clean. But-the joints looked really cool! The crazy white count and inflammtion is due to the autoimmune mess that is my body. The joint itself looks great and he left quite a bit of space to eliminate the risk of adhesions or anklyosis. Since the bones were fusing together pre-surgery, the risk was pretty high. So, I am currently seeing a lymphodema specialist to help drain the excess fluid. For the first time I am probably the healthiest person in the waiting room since this therapy is usually used with cancer patients.
While the swelling is troublesome, the joint still feels way better than before the surgery. Pain is till there. This is the number one fact I would stress to anyone considering surgery. Pain may not go away, and it may in fact be worse. I did it just for function.
As far as the other issues, the pulse and blood pressure continue to be an issue and has put me inpatient quite a few times these last couple of months. Just started on a beta blocker that is helping. I have an echo every other month to check for fluid around the heart and a PFT to check lung function every 3 months. Still helpful that the current I.V. med that I am on will calm down my crazy immune system. All the lympodema treatments in the world won't be effective if we can't elliminate the source of the inflammation. If the cell count is off and my SED rate is still high, we will have to switch to another IV med. It can take up to 6 months to know if a certain med is effective. Obviously I am hoping the current one will kick in. 6 months is a long time to wait....
So, there is the latest in a nutshell. If anybody has a question regarding surgery, I'm more than happy to answer them. My healing process will be slower than most due to the "extra fun" I have going on. Don't read the above and get discouraged. As I've said many times-get numerous opinions. If surgery is deemed necessary, you will have a ton of questions and there aren't too many people out there that can answer them.

Last edited by rocckyd; 01-27-2011 at 07:24 PM.

 
Old 01-28-2011, 05:07 AM   #132
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Re: Bilateral joint replacement/rheumatoid arthritis

Hi Sorbil, Thinking of you and wondering if you have heard anything from Mayo yet. If not do you want me to ask my docs when I go to my next appt? Sort of put in a "good word for you" ?!!!

Beth

Last edited by knittingqueen; 01-28-2011 at 05:08 AM.

 
Old 02-02-2011, 01:58 PM   #133
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Re: Bilateral joint replacement/rheumatoid arthritis

WOW! This thread is still going! I hope everyone is having the best day they can! I went to Shands on the 10th of December and Dr. D was NOT happy about my lump near my left Fossa so he sent me for a 3D CTSCAN and the report said I had either a "Fluid filled sack or a tumor" so I had to go back to Shands on the 14th of January for a bioptsy and that did not help. He stuck the needle in my face six times and could NOT get the needle to go in to the "lump", it was like trying to stick a needle into a rock and get a sample, at one point two interns were pushing down on my "lump" while Dr. D. was pushing the needle up and it still would not go in, so no sample and by then I was in pain and really freaking out. So I went back to Shands on the 25th of January and had emergency surgery on the 26th. NO tumor, NO fluid filled sack. My left Fossa implant had come unscrewed and was sliding back and forth which created a pocket which in turn created scar tissue. I only had one scew out of four left in the left Fossa so Dr. D. tried to rescrew the left Fossa implant back down but I had lost way too much bone so he took the left Fossa TMJ Concept out and wired me shut. We have high hopes that the new muscle flap will heal properly and once I am unwired I can function without the left Fossa. I am sleeping better now knowing I do not have a tumor in my face. My TMJ Concept implant DID NOT FAIL, it was NOT broken, I had just lost the bone it was screwed down to so it came loose. Just another bump in the TMJ road.
Shirlett

Last edited by Shirlett; 02-02-2011 at 01:59 PM.

 
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Old 02-02-2011, 02:29 PM   #134
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Re: Bilateral joint replacement/rheumatoid arthritis

Shirlett, I am so sorry to hear of your recent trials. I got tears in my eyes reading your story! What a terrible thing to have to go through after you have been through so much! I pray the muscle will hear correctly so you will be able to function soon.

 
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Old 02-02-2011, 04:07 PM   #135
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Re: Bilateral joint replacement/rheumatoid arthritis

Shirlett,
An Adverse Event Report should still be filed with FDA MedWatch. You should talk to Terrie Cowley with TMJ Association about this. I was told any complications that take place following bilateral joint surgery need to be reported according to FDA. Bone loss was one of the complications. I had significant bone loss following my Mitek Anchor surgery in 2008. This was considered a failed Mitek Anchor surgery. It is ending up that their have been a few patients that have also had significant bone loss following their Mitek Anchor surgery. I did not have bone loss until after the Mitek surgery.

By reporting your condition to FDA helps future patients in preventing this adverse event from happening. They can investigate to figure out why you had significant bone loss along with review how many other patients had bone loss following their surgery. Just so you know, their have been reports of patients with tumors in the area of their prosteses. This has turned into cancer for a few patients and Terrie can tell you about these cases. Please for the sake of all of us bilateral joint replacement patients, file a report with FDA. This is not saying anyone did anything wrong, but just stating you did have adverse events. Patients are not educated on the fact that they need to report these complications with FDA.

 
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