I went to the dentist today and was told not only do I need a root canal, I also need to have one tooth pulled (the root canal would be too difficult, and it would only save the tooth for a few years). I have had RSD in my right foot for two years now.

I went to the dentist for a simple filling replacement about six months ago. It was pure agony. My face swole up, and my pain skyrocketed for about two weeks. I do not think it is safe to have either the root canal or extraction, but I have to don something at this point. I am terrified that the RSD will spread to my face.

On top of that, I have called about a hundred dentist (endodontist, oral surgeons) and NONE of them will take me as a patient. I need to do something. Please help.

lill,
I have had root canal, and extractions.
(So with your root canal, to hell with it, get it pulled!)
unless it's a 'fronty'.

None required any 'extra' pain meds, other than what I'm taking daily.
My dentist knows me, and I trust him.
Last I had a molar extraction (don't trust the root canal too much), and it was UnEventful.
I was sent home with some gauze, and took my normal pain meds, (Methadone) and, I put it in the gaping hole in my mouth, and let it disintegrate.
It worked better than lidocaine, or, whatever the heck they use.

I'm sure, it would have worked as well, as if I took it normally.

Don't get yourself worked up over dental work, truly, it's NOTHING, compared to RSD!

I mean it!

Pete

asb

PS If you call a hundred other dentist's and are paranoid, naturally, they won't take you!

Am I wrong?

Peace, and be pain free!

Pete

RSD, 27 years

PM me, if you wish....

Just want to share a word of caution here about dental extractions and medications. ALL pain meds are meant to be taken as prescribed. It is NEVER a good idea to put any pain medication or aspirin inside the hole of an extraction site. The medication will absorb the blood clot and prevent the bone from healing in completely. This usually leads to a very painful infection called a dry socket. Oral medications are not meant to be placed directly in or on any open wound or surgical site.

Just wanted to pass that information along to everyone!

Bryanna

Hi Lilli, I don't blame you for being cautious and scared. I've had RSD 15 years and had a root canal, while not knowing I had RSD. I wasn't diagnosed for 4 years. My regular dentist did not have knowledge of RSD, but did research. He gives me antibiotics the day of any visit or even cleaning. I also take nitrous oxide (gas mask) during each procedure. I take my regular meds also. Being in a relaxed state I personally believe is very important as a preventive measure. I do visualization and meditation while in a stressful situation like the dentist office.
While the oral surgeon was doing the root canal, my heart started speeding out of control, I pointed to my heart and he stopped and I found out he gave me an injection of a drug that prolongs deadening drug. I had an allergic reaction to the injection ( I forget the name right now) that can cause death if the heart runs out of control. He had to give me a counter measure drug. I did get trigeminal nerve disorder on left side of face after the root canal on left side, but don't know if there is a connection. I suspect it does and TN is extremely painful like RSD. Feels like an ice pick stuck in temple and affects one side of face.
Hope you find someone to help you. One of your new friends, loretta

I am sorry you are having to deal with this. I too would be cautious. I am not saying this is for you but I was told by a dentist I had 2 caveties. Anyhow the way he stated it was weird. It was something like I could wait to fill them if I wanted but he would do it cause it is not big deal. He was a very expensive dentist like unreal so he makes a lot of money. Well anyhow I am having orthodontic work and was going for opinions and taking my xrays etc to all. I found out I did not have any cavities. This happened to a lady I know too. Do you think maybe another opinion to make sure? If you hae to get this done I would really talk to the person who is doing it and explain to them about your condition. Some may say they know about rsd but in reality they don't. I hope you feel better

Good Morning,
I had a bad tooth a couple years ago that needed to come out, and under the advice of my RSD doc, it was done by an oral surgeon (familiar with RSD) at the hospital and under anesthesia (sp?) I didnt have any problems afterwards. Have you asked your RSD doc for a recommendation to an oral surgeon, usually they know who to entrust their patients to.

For me personally, any major dental work will be done this way

feel better soon

Lili,I also have RSD and unlike you,I just had to have a back tooth extrated.However I went to my dentist first who had to numb it up then drian all the pus out of the tooth! I had been having pain and was very swollen from the middle of the R side of my chin all the way to the R side of my ear! Then he sent me to the Oral Surgery Dept. I had to pay $60.00 for laughing gas. As you know by now many of us are on SSDI.I had been taking Amoxicillin 500mg. for about 1 month before I got my tooth pulled out,and still took it for two week's afterword's! I also was given the gauze to put in my mouth,however I kept bleeding so then they told me to wet a tea bag and try that instead of gauze.It worked great! With my insurance I could not have a root canal or any implant's done,thank goodness it was the very back tooth that they took out! Even with just what I had done I was very swollen for about one and half week's! Then the Oral Surgeon Dr. said to me,I hope with your RSD that you don't loose all of your teeth! I looked at him kind of like this Then he told me that he had just had a patient in that week who also had RSD,and had to have all her teeth pulled out! I wish you peace and day's that are free of pain! Breezy55

lillizziem -

Please, please, please, check out the six articles written for the lay reader on the "treatment" page of the RSDSA site, under the heading "CRPS and Dentistry" at http://www.rsds.org/3/treatment/index.html

Personally, I wouldn't want that kind of work done on me by anyone other than an oral surgeon, who should know how to utilize continuous regional anesthesia for the procedure, or might even bring in an anesthesiologist for that purpose. (And of course I've seen what you've gone through in trying to find an oral sugeon to date.)

Are there by any chance one or more medical/dental schools in your area? They tend to come in handy in situations like this, and are generally not afraid to tackle an "exotic" case when it comes their way. That, and they are often places where the best doctors accept the thinnest of medical/dental insurance coverage.

Good luck!

Mike

Thank you all so much. I have an appointment to consult with an oral surgeon ( to have one tooth pulled) and another endodontist is researching RSD to see if he can help me. Unfortunatly that one does need a root canal, it is up front. The reason I am apprehensive is that I did go to the dentist about six months ago ( after having RSD for 18 months), and had a filling replaced. It had a little decay in it, so I had to be numbed up. The dentist gave me laughing gas, I gave myself a Klonopin, and as soon as the numbing medicaiton wore off, I was in pure agony. The next morning I woke up and that side of my face was swollen, so much so, my eye was swollen shut. The pain was agonizing, not only in my mouth and face, but also in my foot where my RSD is. I had to go to the ER they put in an IV and gave me antibiotics every twelve hours, and sent me home with an RX for morphine shots, since I couldn't open my mouth. The pain was out of control for almost two weeks. Before RSD this has never ever happened. To top it off, I have a very small mouth. I have already had to have four permanate teeth pulled, just to have room for the rest of my teeth. the tooth that needs to be pulled actually does not fit in my mouth properly anyways. I am at the point now that I if these two wont help me, just not telling them and dealing with the consequenses later. The antibiotics are helping a little, but they bring on their own problems.
I have had other health issues and diseases in my past, but this, this is pure hell. I would not wish this disease on my worst enemy. Everything is a fight. I have never seen anything like this. You are all so brave, looking RSD in the face, and still fighting. Thank you

lillizziem -

There are two things you should know here. First, the reason peripheral nerve blocks/continuous regional anesthesia (or just a dentist injecting you with two or three times as much local anesthetic than would normally be the case) are stressed for CRPS patients - as opposed to relying on a general anesthetic - is that a general anesthetic simply knocks you unconscious, but does nothing to keep the pain nerves from going into overdrive and ultimately flooding the dorsal horn of the spinal column, which in turn may trigger "central sensitization" and a neuro-autoinflammatory response, as the area where the procedure is being done is flooded with a wide range of immunological agents: witness the swelling in your face the first time around. At which point, there is too good a chance that you will have managed to induce "spreading" to an area of the body that was previously not generally affected by your RSD/CRPS. From the first and by far the most moving article I recall seeing on the subject, "The Painful Truth: The Iraq war is a new kind of hell, with more survivors - but more maimed, shattered limbs - than ever. A revolution in battlefield medicine is helping them conquer the pain." WIRED, Issue 13.02 - February 2005 [at p. 4/6]:

When an arm or a leg is wrenched from the body by trauma or surgical amputation, torrents of signals from the severed nerves travel up the spinal cord and converge in the cortex. In the weeks following the loss of the limb, the brain redraws its map of the body by growing new neural connections. Pain specialists theorize that windup creates glitches in this new map, causing acute pain from the injury to be hardwired into the body as chronic pain. A 2001 brain-imaging study in Germany found a strong correlation between disturbances in the process of cortical reorganization and the development of phantom-limb syndrome.

A brain under general anesthesia is still bombarded by frantic pain signals; it just can't do anything about them, therefore the patient is still susceptible to chronic pain. Nerve blocks intercept the cascades of bad news before they sensitize the central pain pathways. Blocks also dilate capillaries in the damaged tissue, improving blood flow and accelerating healing.

By the time a soldier typically sees an anesthesiologist, the windup process has already begun, but several studies have shown that use of regional anesthesia before, during, or after the removal of a limb may reduce the incidence of chronic pain. Danish patients given epidural blocks before surgical leg amputation showed a dramatic reduction in postoperative discomfort. Other research has shown that even the short-term administration of a block reduces the need for narcotics in the recovery room.

http://www.wired.com/wired/archive/1...ain&topic_set=

Now for the good news, It was my experience and that of quite a number of people with whom I've been in contact that the absolute level of physical pain was at its worst in the first three years if the affliction, Yes, other issues may pop up, but the sheer level of physical pain seems to top out for many people by the fourth year. I don't know whether that's due to the pain, in the chronic stage, not being maintained by any neuro-inflammation in the body, but at that point significant "cortical reorganization" in the brain, or simply that the capacity to feel the most severe pain somehow burns out along the way. (Citations available upon request.) Having said this, I caution that this is all anecdotal, but it may explain how some people who have had this for a while start to cope with it.*

Mike


* For me, my break came a year into this when a senior pain psychologist referred me to an MBSR (Mindfulness Based Stress Reduction) instructor in my area. It's a ten week program that combines 2 & 1/2 hour small group classes, in comfortable rooms with lots of cushions, which is geared to dampening down the chaos, largely with the aid of guided meditations and simple yoga exercises that are great for regaining the proprioceptive skills that CRPS specifically undercuts. For the rest of the week, students are asked to practice guided meditation and yoga exercises with the aid of pre-recorded instruction. MBSR was developed over 30 years ago, largely for chronic pain patients, by Jon Kabat-Zinn, PhD, of the University of Mass. Medical School, which continues to administer the program and has trained thousands of instructors over the years. Here’s one of their homepages explaining the program: http://www.umassmed.edu/cfm/stress/index.aspx And here’s a link to a search engine that will find teachers in your area: http://w3.umassmed.edu/MBSR/public/searchmember.aspx Finally, a hint regarding insurance coverage. Many but not all of the MBSR instructors are also licensed mental health professionals. And if you go with someone who is so licensed, your health insurance will likely pick up most of the cost of the program, which varies by the region in which the class is being offered.