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    Old 06-23-2005, 02:19 PM   #1
    Skooze
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    HELP! RSD & Dental Pain (myofacial?)

    Aloha everyone! I'm sure this topic has been discussed before, but I just had my first tooth pulled since being dx'd with RSD 5 years ago. My RSD is in the upper left extremity, from a work accident in 8/99. I closed my wc case in Jan 2004, & never have looked back. Since then, in 8/04 I had another MRI on my neck(where the surgery was done12/02 at C6-7) and it showed more damage. This time it showed C4-5 & C5-6disc bulges, with Hypersignal intensity at C6 Level with enhanced contrast(when they injected the dye). Findings are worrisome for metastatic focus. Clinical correlation is requested.
    For any of you that doesn't know what that mean or me (I dropped out of the boards for 6 months-too much drama), Bone cancer is suspected. Thus my neuro & all my other dr's are very careful not to do a biopsy of the neck, because it could inflame the RSD, & I could be back on my cane or in a wheelchair. My left breast has been repeatedly tested. I also had a full bone body scan in 11/04. This time it showed problems in the myofacial area of the left side of my jaw. Since being dx'd with RSD, I have had 1 root canal on an upper front tooth, & I'm not sure which hurt more--the root canal or the $750, because I just have medicare. Then they wanted another $3k for the crown (welcome to paradise), and I also was having other dental pain on the left side of my jaw, I never bothered to cap it. I just recently found out, that my mother had degenterative bone disease and had all of her teeth replaced when she was my age 45.

    Long story short, I had the lower left molar pulled yesterday. It only took the dentist 5 minutes to pull the tooth, beings there wasn't much left ot pull, and after the novicanine wore off, it hurt SOOOOOOOO BAAADDD! I took 3 percocets, which did nothing, and I'm on 180 mg. of morphine. The dentist only gave me an anti-inflamatory. When I woke up this morning my left jaw is SO swollen--it looks like I have a golf ball in there. I can't even bend over. The dentist tells me to put ice on it which we know is a no no ! Any one else have such dental pain??? My attorney told me that he has another chronic pain client, who went to the same dental clinic, and the dentist he got knew about RSD, and said that the drug Neurontin will rot your teeth, or detriorate them. Anyone else heard of this?? I used to be on neurontin for 2 years, when I begged my dr.'s to take me off it, because I was walking into too many walls and was dizzy all the time. My neuro also believes that the RSD is spreading into my left jaw. I remember reading someplace to avoid dental work with RSD, but this tooth was begginning to abcess, & I was on antibiotics until I could get it pulled. I was on 2400 mg. of Neurontin. I see my PCP tommorrow, & any input from anyone ewould be greatly appreciated. Aloha Skooze

     
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    Old 06-24-2005, 04:12 PM   #2
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    Re: HELP! RSD & Dental Pain (myofacial?)

    Hello Skooze,

    I too suffer from Myofacial pain. I have been DX by a DDS, with RSD. I am assuming that my Injury site was my Neck (almost 20 years). I have alot of facial pain everything from headaches to a droopy eye. My Teeth hurt soooooooooooo bad that I will go weeks without eating a full meal. My 4 top front teeth are loose due to Bone loss (but they do not know why I have Bone loss) and they have recommended that I have all four teeth root canaled, but I did not do it because there is no decay or abcess. Now they said they will bond the teeth as needed. I hate to have my teeth cleaned because I will be in pain for a week after.

    In the beginning of my Medical Journey (which has not ended yet) they had me on 3200 mg daily, for almost 2 years. I noticed the bone loss after I stopped taking the Neurontin. My Docs were ****** that I stopped taking it, but I really did not see a difference. I felt that I needed to stop taking all the crap they had me on, so I could start fresh. I can't say for sure if the Neurontin is the cause or just a helper, I also have A thyroid Disorder, which may have caused it also. There are so many factors and I really don't have a supportive Medical Team, so I guess I will never know and if it was the Neurontin, No one is going to admit it.

    I hope your Appt. goes well. I hope I helped.

    Kim

     
    Old 06-26-2005, 10:34 AM   #3
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    Re: HELP! RSD & Dental Pain (myofacial?)

    Aloha Budko! Thanks for your reply, it made my day I have a friend who died with only 2 teeth, and was on NeROTTEN for 3 years, and it never helped her either. They were fighting to treat her dental has a medical problem because she was on Medicaid. My dear friend, Kathy, passed away April 30, 2005, after a 12 year battle with RSD and leukemia. At her celebration of life, I announced that I was going to start the support group up again, in her memory.

    We had the same PCP, the same attorney, and the same drug NeROTTEN, and I saw my PCP on Friday. She has had teeth pulled, but never saw such swelling 2 days after the fact. She told me to go to the dentist to report it. When I did, he claimed that I rinsed away the blood clot, I had so much bleeding afterwards that I had to chaqnge the gauze every 10 minutes. To do this I gently rinsed away the blood. He said that I rinsed away the clot--thus I am on antibiotics again for the 3rd week straight, along with an anti-inflamitory, Diflunisal, and after 4 days the swelling is subsiding. He also told me that my jaw would turn black anfd blue. My neuro, has said that the RSD can spread in the myofacial area, & I have so many dental problems, that I am seriously thinking of pulling the whole left side, tooth by tooth, so I can chew again! I'm 5' 6" and weigh 104. I'm tired of eating soft foods for 3 weeks!

    My doctors, too, did not want me to stop the NeROTTEN! I was up to 2400 mg a day. I called the drug manufacturer, & they told me that there was no proof that it helped RSD, along with 11 other off-label uses. It was to be used as a cojuncture med along with other for seizures. This was right after they giot slapped with the 2nd largest fine for a drug company promoting a drug for off label uses. LIVE, LEARN & PASS IT ON!

    I now am in a Quaqmire as what to do with the remaining teeth. If you say just cleaning your teeth hurts for a week after, I have a feeling I'll be in the same boat. Plus I have no dental insurance. Doesn't take a rocket scientist to figure this one out, I'm lucky that I do have a somewhat supportive medical team, but I do the research for them, and present it to them as not to offend them. Dr's are too busy seeing patients, to do research.

    I'd save my money on the root canals, cause they hurt worse than having the tooth extracted. I just wish there was more research for RSD and dental pain! Where is your RSD? Mine is in the upper left extremity, so I'm more concedrned about the cancer bit, & when my PCP told me that you can get cancer in the jaw! I try not to dwell on it. Maybe the MRI that I'll have in July will answer the ?. Anyone else with dental horror stories??
    Thanks Budko. Aloha Skooze

     
    Old 06-27-2005, 02:04 PM   #4
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    Re: HELP! RSD & Dental Pain (myofacial?)

    Skooze,

    I am not sure where my original injury site is. I have been suffering for 3 years, but they are blaming the RSD on an Accident I had over 15 years ago. It all started about 2 months before I had my Gallbladder removed. When I had the Gallbladder removed, it all went to crap. It started with Very Bad Headaches and now my whole left side and only my right arm (this is new) are victims of RSD, I think. The Symptoms are so Grand and Many that sometimes I don't even know what to complain about, so I just concentrate on the worst and forget the rest.

    I am feeling really lost about my medical care and don't even know where I am. One day all these Docs are going to feel the Wrath of Kim Budko!~ I have seen over 13 Doctors and as I see it, I should of found at least One Good Doctor, don't ya think?

    Have a great day,
    Kim

     
    Old 06-29-2005, 02:04 AM   #5
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    Re: HELP! RSD & Dental Pain (myofacial?)

    Aloha Kim! Yeah you would THINK that after seing that many dr's (maybe 13 is unlucky) that you would find one supportive dr. who knows what the heck RSD is and all the other side effects that go with it. My kid's PCP, teaches alot of medical students. These newbies come into the room, and are more concerned about me & RSD, because they study this, & to see someone who actully HAS it, makes me feel like I'm in a freak show, not to mention my kids who are teenagers, turn into a visit for them, turns into a 15 minute show & tell to the newbie med studentsl I finally put my foot down & said no more med students, if they are supposed to see my kids.
    The flip side of this Is THAT THE NEWBIES ARE LEARNING ABOUT RSD IN MED SCHOOL! They know more than the dr's who have alot of practice under their belt, it's just that they don't have the time to research or attend seminars, or read medical journals, that informs them about RSD! So maybe you should try to find a younger DR., through word of mouth, from some one else that you know that has RSD. I started a support group 2 years ago, & i met alot of people who suffer from this. Even on an island with 120,000 in population!, I know of 12 people who suffer day in and out.

    Sorry to hear about your intro to RSD. None of them are good stories. Are you from a work accident? Cause that is another double whammy on top of having RSD! I know what you mean about seeing the Dr. I have so many problems ongoing that I try and write stuff down all month long, before I even see them. RSD does spread, & mine is spreading into my lower left leg, It can spread with way too many variables. It has a mind of it's own! Can you switch dr's? A good dr. is the key in helping to mange the pain. Have you tried a pain mgt dr? I just use my PCP, neuro, and ortho. Lately I've been to a cancer one, because it showd up in my MRI of the neck. I get a repeat MRI on the 11th off July/ I'm wondering if the cancer doesn't show up in this one as well! My tooth was pulled 1 week ago. & it still hurts.!

    I wish yu well in your search, & I'm going to do some more research on NeROTTON & dental decay. I know their is a correlation. Hang in there! I'll keep you posted! Alloha Skoose

     
    Old 06-29-2005, 09:07 AM   #6
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    Re: HELP! RSD & Dental Pain (myofacial?)

    No, my Injury, was not Work related. I really don't know how I got RSD. I was in a Head on Collison when I was 16. I was seen by a Chrioprator (ms) for 2 years. I don't really remember being in a lot of pain, then.

    I was in Const. for 12 years. I had just passed my General Contractors Exam. So, 2 months prior to having my Gallbladder removed, I got horrible headaches and a Droppy Eyelid. I had my Gallbladder removed and 1 month after that I was in horrible pain in head area and tingly on the left side only, I had visual problems also. 6 months Later I was Hospitalized for Leftside Paralysis and now here I am, almost 3 years later.

    I have had 10 MRI's. EP's, EMG's, Spinal Tap, C Scan and numerous blood and other tests. And nothing has showed up. I went to Denver U Hospital looking for answers and Nothing!!!!!!!!!!!!!!!!!!!!!!!!!!!

    I have read that alot of RSD'ers have/had Surgery. Is this due to RSD or the Original Injury?

    I feel so alone and If this New RSD Doc tells me he can not help me, I think I will really lose it. I remember waking up last night, cussing up a storm, "Why can't I just get through one night sleep without hurting?" I hurt my wrsit 2 weeks ago and it is just killing me. IT started in the wrist and now it hurts all the way to my elbow and 3 fingers. I can't ACE it cuz it swells up. I hate not knowing how to take care of myself. I try not to look back on my life and see what I was. I remember there was a time that I could work a 50 hour week and still come home and bust it out, now I have to rely on my husband to open a frigin water bottle. Talk about breakin a person down. I don't know where I am mentally (apparently in a bad spot), but I am angry, I feel slided. AHHHHHHHHHHHHHHHHHHHHHHH! Who am I? Where did I go? What has pain done to me? Uh OH! I am in a really bad spot.


    Thanks
    Kim

     
    Old 06-29-2005, 03:01 PM   #7
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    Exclamation Re: HELP! RSD & Dental Pain (myofacial?)

    Quote:
    Originally Posted by Skooze
    Aloha everyone! I'm sure this topic has been discussed before, but I just had my first tooth pulled since being dx'd with RSD 5 years ago. My RSD is in the upper left extremity, from a work accident in 8/99. I closed my wc case in Jan 2004, & never have looked back. Since then, in 8/04 I had another MRI on my neck(where the surgery was done12/02 at C6-7) and it showed more damage. This time it showed C4-5 & C5-6disc bulges, with Hypersignal intensity at C6 Level with enhanced contrast(when they injected the dye). Findings are worrisome for metastatic focus. Clinical correlation is requested.
    For any of you that doesn't know what that mean or me (I dropped out of the boards for 6 months-too much drama), Bone cancer is suspected. Thus my neuro & all my other dr's are very careful not to do a biopsy of the neck, because it could inflame the RSD, & I could be back on my cane or in a wheelchair. My left breast has been repeatedly tested. I also had a full bone body scan in 11/04. This time it showed problems in the myofacial area of the left side of my jaw. Since being dx'd with RSD, I have had 1 root canal on an upper front tooth, & I'm not sure which hurt more--the root canal or the $750, because I just have medicare. Then they wanted another $3k for the crown (welcome to paradise), and I also was having other dental pain on the left side of my jaw, I never bothered to cap it. I just recently found out, that my mother had degenterative bone disease and had all of her teeth replaced when she was my age 45.

    Long story short, I had the lower left molar pulled yesterday. It only took the dentist 5 minutes to pull the tooth, beings there wasn't much left ot pull, and after the novicanine wore off, it hurt SOOOOOOOO BAAADDD! I took 3 percocets, which did nothing, and I'm on 180 mg. of morphine. The dentist only gave me an anti-inflamatory. When I woke up this morning my left jaw is SO swollen--it looks like I have a golf ball in there. I can't even bend over. The dentist tells me to put ice on it which we know is a no no ! Any one else have such dental pain??? My attorney told me that he has another chronic pain client, who went to the same dental clinic, and the dentist he got knew about RSD, and said that the drug Neurontin will rot your teeth, or detriorate them. Anyone else heard of this?? I used to be on neurontin for 2 years, when I begged my dr.'s to take me off it, because I was walking into too many walls and was dizzy all the time. My neuro also believes that the RSD is spreading into my left jaw. I remember reading someplace to avoid dental work with RSD, but this tooth was begginning to abcess, & I was on antibiotics until I could get it pulled. I was on 2400 mg. of Neurontin. I see my PCP tommorrow, & any input from anyone ewould be greatly appreciated. Aloha Skooze
    I'm very concerned about what you said about neurontin rotting your teeth?
    where did you hear that Skooze?
    I was on neurontin too , up to 2400 mg and yes you are in a fog... I slowly brought myself down to 600mg but it wasn't enough so my neurologist put me onto it up to 900 mg...
    I'm also very interested in what you said about the dental work. I just had an old filling replaced 2 1/2 weeks ago and last week my tooth began to really bother me so much that I was getting shooting pain up into my eyes and around to my bottom jaw right underneath the upper tooth so the pain would shoot around to the jaw... My dentist took xrays and said he couldn't see anything but put me on antibiotics anyway to see if it was an infection stemming from the tooth. I do feel a little bit better but my tooth is still very sensitive, he said that if I don't feel better he wants to do a root canal!!
    and I'm not ready for that.. no sir.. I want to get a second opinion and try to find a dentist who knows something about RSD. I'll ask my neurologist.


     
    Old 06-30-2005, 10:02 AM   #8
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    Re: HELP! RSD & Dental Pain (myofacial?)

    Aloha Evyeryone! It's early here, 6am, & I don't type the best right now. I took my meds a 1/2 hour ago, but I still might have some typos. I think I opened a can a worms of here.
    I'll try to answer your questions in order that I received them. First wil be to Rrodomyhero- My lawyer told me that he has a cnother chronic pain client who was on Neurontin or NeROTTON, & that where I went to have my tooth pulled is amobile dental clinic. Dentists voluntreer their time to help the needy who don't have dental insurnce (Like us adults where medicaid or medicare doesn't cover it!) He sid that one dentist there who worked on his client told him that there are studies that neROTTON over time will rot your teeeth. My dearfriend Kathy whp passed away, April 30, 05, was on 3600 mg for over 3 years. She died with just 2 teeth left, & weighed 80 pounds. My dental problems started too when I was on neROTTON 4 years ago. I remember having a root canal on my lower left (the one I just had pulled, and another one in Jan 2003 on an upper left. My teeth kept huting, so my neuro said to go back to mr. root canal and have him check it out, bgecause my normal dentist, took xrays, & found nothing wrong. Well Mr. Root Canal happy dentist spent 10 minutes, and after more Xrays, said itnothing shows up on your teeth The dental pain, and he started poking both of them. The top one he just did, said it needed another root canal $750?? , and wehn he poked the bottom one I almost kicked him in pain. The problem is that when I had another ful body bone scan in 11/04, looking for bone cancer, it showed up in my left jaw! That's why it didn't show up on any dental xrays, because it was in the bone the whole time. I never recapped the top root canal, cause they wanted $3K to crown it (welcome to hawaii). After my friend lost all of her teeth, I said I'd rather wait till it had to be pulled.
    Itoo have alot of shooting p[ain in my jaw area, with blinding headaches. My neuro has documented that the RSD can spread into the myofacial area, sinsce my neck surgery was so close to the c level in your neck, which I believe is C4 & 5. I'd have to look on my RSD support group papers to be sure. The dentist who ulled my tooth, on,ly took 5 minutes, & their was immediate relief of pressure until the novacine wore offf! When I sa my PCP she said to go back to the dentist, and show him myswollen jaw, cause she has never had a tooth pulled, that swelled that much! He told me to take anti biotics, (which I 've been taking for 3 weeks now, and an antiinflamitory. It's slowly calming down a bit now but allmy teeth hurt. I'm tired of eathing soft foods. I only weigh 104 on a 5' 6'' frame. But I do my best.
    c3 covers the area on my chart--the jcheeks, outer ear, face bones, teeth trifacial nerve. The only research I ever found was adhesive arachnoiditis, and Sjogren's syndrome--which in RSD affects the eyes and teeth.

    Now to get to Kim's problem. Deep breath. I think research is done that RSD can be caused from surgery. People who have surgery tend to develop RSD. While I was watching tis ping pong game between my neuro & ortho as which surgery to do first and which surgery wc would pay for, my left hand was turning red, whit and blue! Extreme dystonia developed, I held my left arm in a fixed position to protect it from further harm. The neck surgery won, and I had to then fight with the Dept. of Labor to get them to pay for it which too another 6 months. My dr's suspected RSD but never told me. After the surgery, I was doing much better until I started PT, or pain and torture, for the 4th time. I started soaking the sheets there, and even with gentle manipulation, I was having extreme temp. changes. MY PT wrote a letter to my neuro, saying he suspects RSD and over the next 3 months I was kicked out of PT again. Eric didn't want to be responsible for my health. It was a very trying time for me. I quit the support group I started, and became very depressed and bed riddin. My 2 girls, I'm a single mom, had to take care of me and them. They were 15 and 11 at the time. I then got into a car wreck, from the neROTTON, which made me more depressed. I would do things and could not remember where I was going. It took a good year for the neROTTON to get out my system. Sometimes I still have that RSD memory loss, & I forget where I put things! So KIm, I can truly sympathisize with you. If it makes you feel any better, I flew to San Fran to see a RSD specialist on my money, and he didn't believe that I had RSD. WC never got that report, because they never paid for it. I started to closed my case in DEC 2003 , too sick to even sign the papers. My attorney had to come to my home to do this. My immune system was shot, and I was sick all the time. I too had thoughts of killing me and reading the obits. My friend Kathy, who had started on the STS machine and who came to the support group in a wheelchair, then crutches, was suddenly walking without them.
    I wanted to start treatments with the STS machine, but wc denied them! After I got my settlement, I started treatments, and after the 3rd treatment I slept for the first night in 5 years straight through! I bought the machine for home use, and after 1 year, I am alive and moving and I'm starting to get my life back. I now have a friend Laurie, who is a bartender ( I was a waitress), and after 2 months, she too is moving more than she ever has. She never watches TV, but still has bought of crying, because of her family's demands (they think she's is cured cause she is getting back to her old self), but she is overdoing it. You got to take baby steps. You have to think how long did it ake me to get here. There is no majic pill for RSD, it takes time and the right tool that works for you to get your life back to where you can function one baby step at a time.

    I hope I answere your questions. I have to take my 13 year old to the airport now. She won a sport scholarship to go to camp in CA for 17 days. But I'll be back. Take care and have a pain free day. Follow your dreams, & It's good to be bak on the boards again. Aloha Skooze

     
    Old 08-02-2005, 02:13 AM   #9
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    Re: HELP! RSD & Dental Pain (myofacial?)

    Hey Timko-- I bumped this up just for you! Aloha Skooze

     
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