Hi-I am new here and I have cervical stenosis--similar problems to chiari. Just saw Dr heffez again after seeing him for first time in 99...been putting off a laminectomy/fusion all these years but getting closer to going for it.
One of the reasons I am getting more motivated to take surgery plunge is dental work is getting more challenging (to say the least). I had my first tooth extraction (since having wisdom teeth out like 35 years ago) in Nov after 2xfailed root canal and made mistake of getting sedation and my neck probably got put in extension---something I avoid the last 20 years. I was flared up for like 3 months. And I need another rootcanal soon and have been afraid to even get my teeth cleaned since the extraction.
The molar that is either cracked or decayed is under a crown on top right now so I dont trust they know for sure what is wrong--but if I eat anything that needs chewing (like if its not yogurt or rice) I risk irritatiing that tooth and it can flare me up for days--can trigger central pain syndrome and even some of the neck/headache stuff I associated with stenosis. So I feel like I have to address it soon yet I cannot handle thought either of months of flare again afterwards--total catch 22.
and when I look down the road of the years I have left I can't fathom getting flared up for months at a time every time I go to the dentist . I only wash my hair once a month or less these days to avoid flaring pain and weird neuro sx. Its really controlling my life. Yet I work fulltime with accomodations and breaks and lots of days off prn. I also take a good walk more days than not. So its really hard to pull the plug and get surgery....so 2 separate but related issues---stenosis and teeth needs :)
So how do you guys handle the trauma of dental stuff?? I will be sure to wear a collar in the future, make sure my neck stays level as much as possible, but I think that drilling traumatizes my head and neck no matter how still and level I keep my neck...nothing to do about that is there? One doc suggested trying short course of prednisone but I have tried that stuff only once and made me feel pretty wired in horrible way in minute dose. I am really chemically sensitive so taking neurontin and nsaids for a month won't work--nsaids bother GERD and most meds like gabapentin or any that are psychoactive I can usually tolerate briefly in baby dose and then have to stop from side effects. So would rather think of something protective to do on the front end.
i wonder what folks that had seriouis injureis in wars etc do--have dentists figured out something to help vets coming back...because that is what I feel like.....but when I have called around to dental offices to ask about any special knowledge or accomodations that might do for spinal head injuries I am appalled there is no standard protocol as far as I can tell. At least not in WI. It looks like maybe some states more progressive like maybe WA....
anyway, any thoughts, experience etc about any of the above greatly appreciated ! right now feel like punting but have to move forward somehow.
Following. I am also curious as to how many of us have dental problems. My teeth are horrible but I've gone to the dentist every 6 months since I was a baby. I've also had root canal failures which the endo said hardly ever happen to his patients.
interesting point--not sure if I mentioned but I have also always had good dental care and flossed my teeth etc (altho I do eat a lot of chocolate :) )
it was mysterious that the root canal failed 2x before extraction, but one theory was a crack in the tooth from all the work allowed infection to get in
but would be a confounding angle if folks with chiari and stenosis have larger proportion of dental problems....I have been puzzled as to why I have had the least amount of spinal pain since taking zithromax for pneumonia in the winter,still uncomfortable neuro symptoms but less sharp/burn pain in spine....unexpected side effect that has lasted for 6 weeks
Hello!
I can start off by saying that I have TMJ/D with abfractions and broken teeth. I have grinding and jaw clenching and crepitus and chronic tendinitis In the jaw and facial pain. I also have tinnitus which the dental problems may or may not be a contributor to, so I would say yes, some of us do suffer from dental problems. I have not been able to afford to have my teeth worked on so I cannot give any suggestions there but when I have they usually have to pry the blocks out of my mouth because I end up with my jaw freezing. It does sound reasonable that a cervical collar may assist in stabilizing your neck during the procedures. When I had full dental coverage I was referred to a head and neck specialist/oral surgeon. He was very knowledgeable about how all of the components mesh together and my recommendation to you would to be to contact a specialist for guidance as opposed to s dentist who primarily just deals with tooth or mouth problems. A specialist may know immediately how to address your specific situation and perhaps can advise your dentist if need be.
As for it causing imparement in things like washing your hair thier are some adaptive approaches as well as alternatives to standard shampooing that may help you to regain some normalicy to your daily routine where you do not end up having to compromise so much on hygiene. Unless you are exposed to an environment where you are being environmentally exposed to dirt etc it is a falicy that hair needs to be washed every day. There are women with course hair who might only wash thier hair once a week through out thier lives. So it’s not something that most people actually need to subject themselves to daily so you can relax a little there. For the rest of the time. They make no rince shampoos and there are also no poo methods of hair care that you can switch to. For in between days if your hair is getting oily you can use things like cornstarch, baking soda or other options as a dry shampoo for oil absorption. There are all kinds of recipes to try that help to keep the hair cleaner between Washings. For some people rinsing hair with diluted vinegar works well. Getting and using a hand held shower head while sitting on a shower chair in the tub and hanging your head forward or keeping it upright instead of arching your neck backwards is helpful for some people or sitting in the tub and pouring water over your head with a cup is an option too. You may even be able to wash your hair in a sink in the house If you place a seat in front of it and lean your head forward under the water or use a cup if the faucet is low. And as much as I hated to do it, I cut my hair short and don’t regret it. My hair was very long (past my butt) and an accent of mine but I have disk degeneration in my neck amoung other issues. My hair was falling out excessively and it was heavy especially when wet. So I cut it short. Anything from a chin length bob to a pixie cut has been great and instead of dwelling on my short haircut I have fun with it by dying my hair alternative colors and expressing myself with head scarfs. It’s so much easier to deal with. It’s so much less strain on my neck and I save a butt load on haircare supplies. So take it into consideration anything you can do to make life simpler for yourself is going to help.
Last thing that I can give you an opinion on is your difficulties with medications. I am a tiny person and I get a lot of side effects with medications. Those of us who are hyper sensitive can have success if we are dosed by weight and if we are titrated on the medications one by one slowly. Sometimes you have to be taken off of the medications for awhile and put back on them so that the side effects can be controlled. Sometimes a lot of different combinations have to be tried until a good combo that works for you can be found. Some people who fail on neurontin have success on other things like lyrica or Kepra. And steroids do not all have the same mechanism of action or half life. I do well on dexamethasone and trimacinilone but methylprednisone makes me feel worse and prednisone is great for me for hives but not for arthritis. So I feel your pain when it comes to taking medications. I would find a good chronic pain specialist who will work with you closely and who also uses alternative pain management methods. They maybe able to offer you hydrotherapy and acupuncture/dry needling and things like knesiology taping of the neck as well as a tens trial and or possible implementations of an internal stimulator. I found that pharmaceuticals at well managed super low doses in a good combination along with physical medicine and rehabilitation with alternative methods for pain management to be the way to go and perhaps that is a balance you will find helpful too.
Lastly there is a therapy for chronic pain that is called Acknowledge and Commit Therapy. It has been determined in some studies to be the most effective cognitive/behavioral therapy for chronic pain. It is something that you have to have the will to do wishin yourself but the basic concept is you acknowledge that you have pain but that you have activities that you wish to accomplish despite your pain and you commit yourself to doing those activities that you really enjoy to increase your quality of life in the moment. You very much have to live in the moment. Many of us pay for the things we do later. Following this therapy allows you to be more productive some days because you live in the now and commit to do what you can and you choose not to worry about what later or tomorrow is going to bring. You do it anyhow. You still pay for it later, but you accept that when it comes. You endure it and get through the flare up and acknowledge the pain and commit to what you are missing out on again. It’s easier said then done but it is a concept that athletes and those with a strong work ethic can readily pick up and once applied is very familiar and meshes well.
I can empathize with your plight and mostly all I can say is hang in there! It’s not an easy path your traveling down. But I do offer you my prayers if it is appropriate. I hope some idea in here can be of some use to you. HUGS!!! Kris
Kris--thanks for the detailed info and answer! excellent stuff---especially the part about asking for dental specialist---will give that try. I want to respond more but am toast at the moment--wanted to say thanks for now tho!
I too have had dental issues. I recently had upper left molar extracted. I went to any dentist that could get me in and explained my Chiari beforehand. She did her home work before extraction. Suggested Valium before coming in and took very good care with me. I then scheduled root plaining in four sittings taking Valium before each visit. Always having my neck supported throughout all visits.
What the hygienist discovered in those months was how quickly the plaque built up on that left side. Like in a month. She believed it was due to sleeping on that side, which I do. Just a thought.
I will say here that I moved from altitude of 8,000 ft to South Carolina to see if that would help symptoms. I also quit my job and made myself just stop doing so much. It all changed my life.
We are heading back to altitude in two weeks and I’m very curious to find out how it will go.
Floss floss.
thanks you guys---really helps to hear others experiences and ideas. Kris here is the thing--when I got hurt from the extraction in Nov I went to one of the supposedly best guys in town : "completed a five year oral and maxillofacial surgery residency" it wasn't a dentist but higher level. I explained the whole situation ahead of time, he said "I got this" and rec'd the sedation because said helps prevent worse pain later in chronic pain folks--but my concern was I wouldn't be cognizant enough to hold head (to prevent extension of neck)if I did twilight sedaiton and I am pretty sure that was one of the worst mistakes we made, to do sedation--he was supposedly trying to only sedate me a little so I could hold head in correct position (for my issues)but I dont recall a thing--so anyway--next time I get dental work going to wear the collar and never allow sedation again, I think i also had bad reaction to those chemicals. He said he would try to avoid putting my neck in extension but he was getting the last molar on the bottom and I have no idea how that went--but I was in flare up for almost 3 mos after.
Next time I will wear collar and I think I need to put slight cushion above and below the neck collar too though because I don't want it jamming into my neck as lean back in the chair. Man I wish we were in star trek future where they could just wave a wand and fix stuff :)
Interestingly Soup, I am trying to switch sleeping from right to left side occasionally-I have gone long periods feeling that it felt better for various reasons to be more on one side or another. Lately I alternate more frequently.
kris thanks too for your perspective on the shampooing,yea I was happy to learn there is the green movement of people not washing their hair for organic reasons lol so I will just pretend I am on their bandwagon. ;)
that is interesting about the action committment therapy. A friend of mine does that. when i got in flare up after dentist this l last time I read a book called "Back in control" by Hanscom, a neurosurgeon, it is written more with low back problems in mind but some good ideas for chronic pain and he recommended the CBT books by David Burns who is on Ted Talks too and some other books like "How to be sick" by a buddhist law professor with cfs. It has all been helpful. One thing tho that Hanscom does point out, is that if you do have a structural spinal type problem that is really getting in the way of recovery and surgery would be only way to alleviate it then sometimes all those therapeutic efforts in mental health realm can only get you to a certain point---I think its sort of analagous to living with a spouse that beats you up--you could go to domestic shetler and psychotherapy and get revitalized perhaps but if you keep living with them and they keep beating you up, well you keep losing ground again and it might be hard to evolve to higher level in Malsow sense. Hanscom thinks surgery way over used in low back stuff and he is true believer that psychotherapy can cure just about everything. But I know I am in catch -22 feeling like choice of no surgery or surgery---that both have big downsides. Heffez validated in eval recently as did a top neuruosurgeon in Seattle in Feb---that my stenosis is causing a lot of pain and disability and surgery they think has high probability of helping alleviate a lot of that. However its not mandatory and there are risks.
Anyway, the reason I bring that up about therapy is that for example pacing is a really important part of my self care and making things work to point they do ( I do work full time with accommodations of sorts) and so is walking most days---and more often than not i know how far I can push myself but there is definitely a fatigue and neurological cap on how far I can push self and timing etc is part of it--I wouldn't want to ever put on myself or someone else a "pull yourself up by your bootstrap" or "mind over matter" sort of vibe because I know that can feel devastating or be dangerous if one isn't self aware about their boundaries . I know there are people who are just scared and with time and CBT etc probably could do more---but the worst thing is to be at your max ability safely and to have someone else doubt yr doing the best you can.....I am not sure how one stays graceful all the time in bad flares but I am trying to open mind and work on it. but sometimes I think a good analogy for "normies" would be to tell them to put their hand on a stove and turn it on and then as it heats up tell them to keep smiling and do some meditation....maybe Tony Robbins could do it but at one point should someone pull their hand away or if they get crabby is it understandable.....tricky stuff
oh also Soup I want to har about altitude and plaque and yes I do floss every day lol since I was a teenager!!
But maybe I can see it there is another specialist max surgeon in town like you suggested Kris--I still feel like, after what I went thru and the responses i have gotten the last couple months calling around dental offices asking how to find someone specializing in dealing with folks with tricky head/neck med issues--that dental field 99% not prepared and has no protocol to fall back on---Kris do you feel you live ina progressive state medically/dentalwise?
I can't say I feel that I do lol
Seattle,WA impresses me as more evolved in specialised needs, WA comes up a lot when google dental and spinal special needs, more research and more special care, but still may not be saying a lot, compared to where things could be
I would lke to hear more Kris how that action therapy helps you Kris if you open to share here or in private note
and Soup, one other thing, for about 12 years I only worked 50% at a fairly low stress job with accommodations and so I hear you about taking care of ourself and slowing down--I decided to challenge myself to work more a few years ago --for variety of reasons, money part of it,part of it bucket list thing to challenge self but i let go of creative and social endeavors to do it--but I sort of feel that as I get into my older age that "service" is most important thing for now to me so I dont mind doing less of other stuff for now--but if I wouldnt have had semiretirement so long in early mid age I wouldnt be up for working more
that said if things get bad my priority is to try to take care of myself so would try to find way to work less if i feel its spiraling down too bad
of course if i do the surgery it could either make it much easier to work fulltime, wouldnt have to pace schedule to be by a couch for mid day to work from prone position for awhile to recover--or could get worse and need to get on total disability---its that toss up that tortures me cus from wht i can see from variety of forums on these topics its a crap shoot
treesforforest said:
thanks you guys---really helps to hear others experiences and ideas. Kris here is the thing--when I got hurt from the extraction in Nov I went to one of the supposedly best guys in town : "completed a five year oral and maxillofacial surgery residency" it wasn't a dentist but higher level. I explained the whole situation ahead of time, he said "I got this" and rec'd the sedation because said helps prevent worse pain later in chronic pain folks--but my concern was I wouldn't be cognizant enough to hold head (to prevent extension of neck)if I did twilight sedaiton and I am pretty sure that was one of the worst mistakes we made, to do sedation--he was supposedly trying to only sedate me a little so I could hold head in correct position (for my issues)but I dont recall a thing--so anyway--next time I get dental work going to wear the collar and never allow sedation again, I think i also had bad reaction to those chemicals. He said he would try to avoid putting my neck in extension but he was getting the last molar on the bottom and I have no idea how that went--but I was in flare up for almost 3 mos after.
Next time I will wear collar and I think I need to put slight cushion above and below the neck collar too though because I don't want it jamming into my neck as lean back in the chair. Man I wish we were in star trek future where they could just wave a wand and fix stuff :)
Hello! I hope this finds you as well as can be under the circumstance. Did I write “action” ??? I don’t know if that’s my broken brain or the stupid autocorrect, but I meant to say acceptance and commitment therapy ACT for short. Some schools of though put it as a subclass of CBT and other set it side by side, but they are finding in those with chronic pain especially those with moderate to severe long term chronic pain which is particularly difficult to treat that ACT is proving to be as or more effective as other CBT models and in application can significantly improve functioning and quality of life. It’s only recently becoming more prevalent in the chronic pain world.
Basically it is a principal that alot of: athletes, soldiers or others public service positions or things like agriculture, manual labor etc as well as those with strong work ethics already are familiar with and have probably put into practice in thier lives without thinking about it. Many people with those backgrounds are likely to adapt to ACT easily and find it very familiar as it is already engrained and we apply it subconsciously.
It can be different for every person and I’m no behavior health specialist so I won’t try to go into the layers or what combination of things or tools go into ACT or that they use to get people to alter thier behaviors, but I can try to explain the basic principals which are fairly simple.
ACT for chronic pain is simply Acknowledging that you have pain and then committing to engage in things you value despite the pain. It is altering your behavior to be very present focused and encourages you to live in the moment so that you can get more value out of life. It’s a bit more complex then that but there is tons of info on the internet about the therapy itself because it’s been used for things like anxiety here in western culture for a little while now and can be found in other forms in spiritual practices as long as history has been documented.
ACT doesn’t cure your chronic pain or fix what is causing your chronic pain or lessen your chronic pain. It just teaches you how to function within your limitations despite your pain. It teaches you not to think about the pain you might have later or tomorrow or the pain that you’ve had in the past. It teaches you to acknowledge that you are in pain, to accept that pain as your current normal and then to set the pain aside so you can commit to doing things you most value instead of avoiding them because of the pain. It is a way of learning to live in companionship with your pain as opposed to being ruled by it.
Like and athlete who tapes up an injury and turns around and gets back in the game.
Like a soldier that finishes his march on bleeding feet.
Like a policeman who jumps into an icy river to rescue a stranded dog.
Like a farmer that ignores his aching back to ensure all the livestock have thier morning meal.
Like the single mum or dad who feel sick as a dog and still go to work cause they have little mouths to feel. Most of us have already used act without thinking about it cause you don’t have much of a choice otherwise. We just weren’t necessarily mindful about it but once you get a little training in and pick up the tools and the skills it’s not that hard to adapt to the mindset.
But I agree with you. I think it is just one component part and its more of an attitude to adopt as part of a comprehensive chronic pain program and definitely not a cure all. Physical Therapy, Alternative therapy, pharmaceuticals, surgery if appropriate or whatever other physical medical treatment is appropriate for the condition etc etc all play a part and a role and there is a balance and different recipie for everyone. All we can do is share our discoveries with each other and hope that someone gets some benefit out of it in part.
I am going to have to research the info you mentioned, because I am curious and interested in what you have to bring to the table as well. Thank You for the reply. Hang in there!!! Hugs! Kris
yes "acceptance committment" that is what my friend does--sounds like good approach, I will google around
I have been into so many books this year....the big flare I had in the winter did motivate searching renewed so that is something good to come out of it anyway---I just got Oliver Sachs new autobiography--am stoked--love that guy!
but I agree with a lot you are saying Kris about how to cope and make most of hard situation---I am trying to think how to explain express the part I have a little blip of confusion/question about it---with the cervical stenosis and disc problem with some hypermobility in my case for example--- the pain from risky physical actitivies well its not like how I picture for example straight up fibromyaglia or bad headache to be.....there are certain activities that I feel are dangerous for me--for example it wouldn't be prudent to go ride a bike or do aerobics---things that might shift position of neck and then press on nerves more or cause flare of cervical instability---trust me I tried so many years so many ways to push to do more than just take walks--I was a scrapper and tough but I finally had to accept it was like hitting head a against a brick wall. And I went to body workers for many years for "subluxation" feelings in neck brought on by inappropriate chiropractic initially and then from pushing my boundaries--fortunately after 20years of that it finally calmed down some in last 4 years knock on wood (the instability) but I might still really need a fusion if I did go surgical route as laminectomy alone may not be enough---so I don't know if with chiari its like that too---where it can be risky, not just temporarily painful, to do rambunctious activities. I for example try to go for a walk for an hour every day most of the time, unless really sick or really bad flare--walking ok--but setting a goal of going jogging would be devastating--the dysfunction and pain would last for weeks maybe months and its possible it could throw me into surgery not feeling optional. I sort of felt like surgery wasnt optional the first 2 months after the dental extraction last Nov--I was like this is ridiculous--now its calmed down--and am finally going to deal with a cavity Friday--send me good vibes that it won't be so dangerous as the extraction---because I have been sooo happy lately to be out of that last scary flare. but if this does mess me up bad again perhaps that will give me the answer on whether I can continue to live like this---
but anyway, not sure what my point is---just that folks should be careful to know themself and what is safe for their situation and not to think they should necessarily be able to be a triathelete as long as they do CBT, ACT, mindfulness etc Even if I was hooked up to morphine drip I wouldn't think it would be safe to go jogging. What I do know of ACT I am sure that could be consistent with what I am saying to be safe --make a plan of what is safe and your goals within that. I also know some folks with really bad CFS, and I do believe some of them really cannot get out of bed no matter what therapy you gave them--i wouldnt want them to feel like failures like they are just not doing the therapy correctly. That said there are some really good books by Dr Norman Doidge regarding brain research and how to overcome so debilitating neurological problems--his most recent book has a chapter by a chronic pain doctor who himself was terribly physically injured and suffered for like 15 years but he figured out a way to alter his brains perceptions and overcome it--I have not finished the chapter yet but it involved visualization. Worth a try, low risk :) but again, I do wonder if say one has a structural physical problem that is perhaps analagous to like a cracked/infected tooth --that will for example hurt everytime you bite on it, so best not to bite on it and get an antibiotic--sure go ahead and do some mental therapy too in that case BUT unless yr Gandi or the Dali Lama don't feel bad if that doesnt totally remediate it lol thats what I am trying to say...hope it makes sense
anyway--you sound like a spunky positive person--thanks for taking time for thoughtful posts
