Hi–I was wondering if anyone notices their intellectual functioning decline temporarily from different physical movements that perhaps irritate the brain? I have diagnosed cervical spine issues and have consulted with Dr Heffez and Dr Rosner over the years–and Rosner had said Chiari was also possible.
At any rate I have noticed that if I turn my head over my shoulder to look behind me, especially if also reaching for something, and especially if lying down, that it triggers what feels like a neck and brain sprain for few days (maybe more maybe less sometimes)
its like it bruised something mechanically but going into that position?
does that make sense? does anyone else get something like that from wrong movements posturally? its frustrating, nothing really seems to alleviate it except time. I have theories on the mechanism but am not sure. wondering if it puts pressure on brain stem maybe…anyway, any insight on whats happening and if anything to do besides avoidance (have not had surgery btw)
I have chiari symptoms are all a little different but yet the same I think with chiari. I do have brain fog,& lost memory,some days are worse than others.My head and neck pain are worse with the movements you talk about.
I have the same thing! It feels like I get a concussion or a mini-stroke every time! I first experienced it before surgery as a big special event (ambulance etc) followed by smaller, repetitive episodes since then. I had Chiari surgery 3 years back with much improvement (I have gotten out of bed but not out of the house!) but still have those episodes with neck movement and arm movement. I become cognitively impaired as you mention with some strange pain in my neck - tends to last about three days. Doctors where I am at are at a loss. They are currently humouring me with an CT-angiogram with my neck in rotation and extension to look at the vertebral artery.
I, personally suspect the vertebral artery is involved but am not sure that this is the right test.
If you find out what is ailing you, I would greatly appreciate you contacting me to tell me. Seriously.
I live in Canada and there is no system in place to deal with strange and unusual conditions - just heard a talk on the national radio station about that very topic. I could have told the host that myself! My husband is telling me that he wants me to go to the Mayo clinic in Phoenix to find out what is going on. I guess that is what a line of credit on the house is for.
Please gets some testing and answers and specialist appointments so that I can live vicariously through you and hopefully find some answers. I would like to live more fully than what my cognitive and physical abilities allow with this pesky brain bruising.
And if anyone else knows anything - spill.
Sounds to me like the issue for both of you is less mechanical issues and more a pain management issue. It doesn’t take a lot of uncontrolled pain to make everything catywampus. Now getting pain control is easier said than done. Pain Meds are not the best and can cause more issues although NSAIDS can help with little side effect. PT, adaptive aids (cervical collars etc), massage, chiropractic posture strengthening etc. are all options…
thanks everyone for input, its very helpful!
I don’t really have any external pain management, just what I do mentally, behaviorally and physically to mitigate things—have had a lot of experience over last 25 years with just about everything PM has to offer and the side effects and my poor tolerance make it not prudent at this point and I am passing for now on an epidural steroid into neck, havent tried that but was offered in last year after hit pothole in car and flared things up.
there is a mechanical issue in part because this problem came on after chiropractic manipulations high velocity many years ago–before I had mri’s to show that was bad idea in my case. Since then have had problems with subluxation-like episodes, its a looong story but I cannot tolerate extension at all of neck since then.
Jazzypants I will write you a note later, dont have much time right now but wanted to thank you guys for your thoughts. I have wondered about my cerebral artery being damaged by the manipulations and have also wondered if elhers danlos which would have made me more vulnerable to those sort of neck manipulations----it was such a bad course of care I chose back then that did so much reversible damage, its the tragedy of my life.
oops gotta go…
I also have cervical issues @ c4-6 which have not been corrected yet. When I was at my worst-dizziness when upright, rapid heart rate, brain fog, dizziness when turning my head or looking up, b/p up and down, I was correctly diagnosed as having cervical instability which is also called basil invagination. I had a c-1 fusion and rods placed on upper c-spine. This corrected all of the strange symptoms I was having. That surgery was 2 years ago. I am trying to put off the c4-6 surgery as long as possible. I was told by a NC neurosurgeon(one of many I saw) that I had chiari 1 and he wanted to sign me up for a decompression surgery that day. I am so glad I did not do that. It would have made my sxs worse. I have felt so much better in the last two years! Please get an upright Mri that includes the brainstem area. My alar ligaments had damage which may have been the root cause of the problem. I will pray that you get a correct dx very soon.
Cheesh! I wish I had chronic pain as then I would know what to do about it! With a maximum 2/10 pain score lasting one day after an episode, I think that most people on this site would be envious of how little pain I do have anywhere in my body. Unfortunately, cognitive and brain fatigue issues are my main concern with my day to day function.
Normally, I enjoy reading what you have to say on this site but thought that you gave short shift to the complexities of dealing with chronic pain. Common, so don’t feel bad. Heat packs and massage do feel good for a short amount of time. They just don’t get to the root of the problem.
Categorizing folks into a sub-classification system (motor-control, patho-anatomical, CNS coordination, neuropathic pain, neurogenic pain, behaviour factors, central sensitization, body image pain, and NISE Syndrome) is vital to address, not just manage, chronic pain problems. Excellent questionnaires and subjective history-taking can narrow down a person’s problem area.
Then, proper treatment for each classification is necessary, but unfortunately not understood nor practiced in the average medical health treatment centre. It tends to sadden me when I read about folks here and know that they are not receiving the proper assessment nor treatment to live a better quality life. Chiari only adds complexities to dealing with pain issues. Sigh! I do not know what the answer is to getting out information on what pain is and is not. More education and willingness to contemplate different areas of thought in the health care professions is required. Much easier to give out a prescription for drugs that we all know do not do a whole lot and have side effects to boot. It is tough because treatment for chronic pain is not easy and takes time on the patient’s side and also the health care provider.
@gabby_jazzypants Not at all short shifting chronic pain, But I also wasn’t referring to chronic pain but rather pain coming from mechanical action. Pain (even minor) is a symptom, making it “feel better” is not a solution. Meds and pallative measures of little help. in the case of Treesforrest and laura who were asking about mechanical issues and a chain of events caused by as simple as turning ones head causing " subluxation-like episodes" followed by brain fog.
If it was a chronic issue rather than easily linked to a specific incident, then “pain” and/or inflammation from the incident wouldn’t be the answer for the brain fog. Cognitive and brain fatigue issues on day to day basis are something different.
Why the action causes the pain and other issues is a separate matter from the brain fog that comes and goes as result of the action. Turning ones head and other cervical issues are usually a stabilization issue the cause can be condition like EDS, or other. Stabilization as in the case of PattyAnn was the answer.
Rarely however is a chiari malformation the answer. And as you noted Gabby a really complete history and differential diagnoses will do a lot. FWIW there are few surgeons who have the training or understanding to do so, they are looking for any ANATOMICAL anomaly they can fix. Sometimes its a solution sometimes its not.
Thanks for that info! I have been rec’d in past by some neurosurgeons for laminectomy and possible fusion and was told it would be 4 levels I think! Dr Rosner years ago had said he suspected chiari malformation too but others have not brought that up when looking at my mri’s but he was much more certain about the stenosis, everyone agrees on that and the bulging discs.
I have been too chicken to do surgery because I do not weather invasive stuff well at all nor meds so if made me worse I would SOL for pain management no matter what they offered me I have trouble detoxing it for probably genetic reasons mostly.
but it has been a major frustration the last 26 years since I got “hurt” and my mind goes to surgery at times wishing could have crystal ball about roll of the dice.
the pain waxes and wanes but its this kind of stuff I talked about in this thread, the weird neuro problems that just pain medicine don’t make go away, feelings of subluxation and fogginess and all that hate it. lying down intermittently thruout the day has allowed me to continue working the last 25 years but if I didnt lie down to let my neck relax, and it feels like it takes some pressure off my brain stem or something and helps me keep functioning, if I lived in a situation where I wasnt allowed to that all these years…it would have been a nightmare…I dont think I would still be here or I would be aged 30 years beyond my years lol
and Patti Ann I think its poorly understood how much of what got set off in me was from first neck extension during anesthesia for a nonspine surgery (I Had no neck problems before then, was age 29 then) and then I foolishly did high velocity chiropractic after that and then atlas orthogony to try to fix it and the regular chiro really ruined me, I kept doing it because I had bought into the “alignment” nail hammer approach thinking i could handle the pain if it was putting me back together, well it never happened and then MRI found out stenosis etc
the atlas orthogony helped for a year or so but never got normal again, and its possible it was all complicated by the possibility that the surgery had been a trauma and besides my neck getting messed up it triggered some immune problem that was subclinical so double whammy. But before then I was resilient, couldnt have pictured not being so.
anyway will write you private note later, am on my break now but have so many questions for ya
I found this interesting after seeing mcmahon in a bears docu I researched his neck issues
and grabbyjazz you sound very educated about pain management, i have a lot I would like to talk to you about too. I did a sabbatical in Calgary in 2000 to try myosymmetries biofeedback I do not know if they are still there, it helped a little but nothing that I feel endured.
I am in midwest and I can assure you i have not met anyone that I feel does comprehensive evaluation here to sort out things like damaged artery, ligaments vs spine or muscles…one thing that still is really disturbing to me is how unscientific and uncomprehensive most medical evaluations truly are----it seems the bar for diagnosis is so high, you have to be in 24-7 crisis with obvious issue to get diagnosed for those sort of things, otherwise its just easier or cheaper to say fibromyalgia or something…
Chiari aside, with the cervical issues and such you are talking about I would encourage you to pop into our polyneuropathy and facial pain sites. I think you will find some helpful info and on the facial pain site in particular some good information on the meds mentioned here as well as some additional coping mechanisms. Not syaing those are the issues you are suffering from, just that there is some common ground.
Patti Ann sent you note about upright mri…
So, a few months ago I went to my NS after being diagnosed with Chiari. I told him my symptoms including brain fog forgetting things and a bunch of other things. He actually laughed at me? He told me to also forget about me even having chiari? Like I was a crazy person making these things up. He told me it was a mild form that it didn’t effect me. My thoughts is he isn’t me and isn’t in my body. I had these symptoms even before finding out I had it. It just made my puzzle go together finding out I had it.
So he gave me a spinal, which I've heard I wasn't suppose to have. End result he told me I just had migraines??? Not sure what to do at this point. Any suggestions?
ah Sorry Tiffany to hear this, doesn’t seem like you felt he was respecting your symptoms. There is such variance on how patients can get treated with these issues all around the country. Ehlers Danlos Syndrome is also something that can be related to chiari and cause brain fog, some of those forums might also be helpful for validation to you of your symptoms. I think the way our current health care system is set up makes it easy for busy doctors to try to discount complicated issues and leave us feeling unheard and unhelped. It is hard to be our own best advocate when we are not feeling well and then on top of it feeling a bit disrespected by the very people supposed to help us. We just have to stay strong and do some of our own research and find support on line and in person and not return to doctors who we don’t think get it right.
so someone diagnosed you already with chiari, what kind of doctor was that and can they support you to find a different one than that ns?
Here’s the issue. There is a big difference between having symptoms which should be respected and acknowledged and then taking the next step which is connecting those symptoms to a specific condition which can be 'corrected"
Chiari and now EDS have become “hot diseases” The problem is they are not new, unknown or poorly understood, rather they have become Huge profit centers for initially well meaning physicians. As you read these boards few patients are helped by these procedures costing 100’s of thousands of dollars. When I say helped I mean BETTER. Don’t confuse DIFFERENT with BETTER.
The internet has boiled things down too far. Chiari is NOT Diagnosed by MRI. The condtion diagnosed by MRI is Tonsillar ectopia. Its often called Chiari, but its really not. That requires a much more in depth diagnoses. Had a long session with the recently retired director Of neurology/TBI rehab at a university teaching hospital on the east coast (he retired to my part of Montana and is doing some locum work) Asked him about the issue. He said in his career he had seen hundreds of cases of tonsillar hypoplasia and MAYBE in those thirty years 4 oar 5 that he was confident in being Chiari 1 (1% -3% which seems to be common number in most University Studies) In short don’t confuse what is happening in the "Chiari Clinics: which are closing or BEING closed on a regular basis with a real diagnoses:
Step 1: Determine if there is tonsillar hypoplasia
Step 2: Determine the degree of posterior fossa hypoplasia
Step 3: Amount ofDecrement of CSF flow velocity (This is not done by a Cine MRI)
Step 4: Relating specific symptoms to The tonsillar hypoplasia (EMGs physical exams, mapping of white matter lession/ischemic etc.
This is all a very long process. Now what irritates ME is the rush (by thankfully declining numbers) neuro surgeons to plow ahead with surgery BEFORE all the work is done. You know who these guys are. They are the ones blaming “EDS” “cervical instability” and even Eagle sydrome… NOT for problems but for the failure of surgery.
EDS has been around since 400 BC… Rare and poorly misunderstood? Hardly Hippocrates used EDS (as has practically every medical school since) as the basis of differential diagnoses. I would think after 2600 years its known about I’d sue the dickens out of a NS who blamed his failure on EDS. Same with cervical instability (which is far less of a problem than cervical stenosis which pretty much can’t be helped a lot) You check these things and correct the BEFORE you do elective brain surgery.
I guess what I’m saying is just because you have a diagnoses (or a partial diagnoses) of “Chiari” that doesn’t mean that its the cause OR its correction will solve your symptoms.
A good doctor (we have at least 3 posting here one under his own name) will do Chiari surgery but he ellminates everything else first. (Thats why they have sucess rates that significantly exceed the "norm) But more importantly the doctor that says you are not a surgical candidate despite “your research” is not a bad doctor.
BTW please excuse mt typs, the reason I met the good doctor and spent some qua;lity time with him is I had a stroke last week and he happened to be in the ER and supervised the iTP infusion (which worked pretty darn well)
Hey TJ-wow you are impressive to be on here writing…take good care of yourself. Thanks for the good info. I had no ideas some docs were on here…that is cool&interesting they would offer support that way, they probably learn a lot too. I shouldn’t be so cavalier at times in my cynicism about med system…I always trusted it growing up, had a father that was accomplished surgeon…but after getting hurt and weird chronic stuff myself…after having surgery and some other interventions that my health insurance paid for and then being on a frustrating journey since to figure it out…it just opened my eyes to the fact that its not an easy system to navigate…and this started years back when sexism etc was more rampant…not to say that there haven’t been brilliant, helpful individuals in the system along the way…but the overall organization of it, for me, has definitely messed with my head. But like everything we are where we are at this point in history and have to keep advocating and learning for selves…you seem like you are from pretty hearty stock TJ , great that you are trying to help others.
For Tiffany, we can’t really know what her bottom line diagnoses are…she may or may not have chiari. I just feel for the confusion and stress of trying to get to the bottom of that, especially if have no medical background etc
Seenie here from ModSupport (we are a team of three: TJ, Meli and me). Yes, TJ is an amazing person who has overcome enormous obstacles and continues through thick and thin to work incredibly hard to support others. (You only know a fraction of what I know, and I am guessing that I only know a fraction of TJ’s complete story.) He is an amazing person, even if he can get a bit gruff at times. Sorry, TJ, had to throw that in.
Yes, we do have doctors (often retired) on our communities. Our guidelines forbid anyone from using professional designations such as Dr. or RN or Justice so that we are all peers and equals. The only members who are allowed to use their “Dr.” title as their screen name are ones that we know and trust. (And those are very few and far between.)
The others are here as knowledgeable lay people. Anyone who says “you can trust me, I’m a doctor”, well, you’re on your own … everything you read or see on the internet needs to be viewed with healthy skepticism, and your health care decisions need to be made in person, with professionals that you know and trust.
That said, we think we are a pretty good source of information and support, don’t you?
hey thanks for weighing in–it all sounds good and yes you guys are a great resource, thanks for your work!
I saw that you mentioned in order to check for the CSF flow velocity, one would not get a CINE MRI. How is it tested?
From what I’ve come across people said CINE MRI’s ruled out whether obstruction of CSF flow was the cause of symptoms or not.
I recently visited Mayo, went through the ringer of tests, and everything checked out including a CINE laying down. Yet my symptoms persist. However, the measurements of my herniation are different from an upright MRI (measuring 6.9mm) v. laying down (4mm in 2016, 4.5 this year). Is that normal? They told me there was a sort of margin of error for the measurements.
Of course its normal for that kind of variation. Look at your stomach when you are in several different positions. Cine and upright MRI were adopted as a sales tool by many of the now largley defunct “Chiari Centers” and "chiari specialists Several of the docs in prison several more have “retired” or been fired (including a couple of big names) a few others left the country and a very few turned legit realizing the surgery they were selling helped few. When Chiari IS the cause, its a pretty simple diagnoses, the rest of the time its not chiari as long term results of the surgery have shown. Cine never showed flow of CSF in normal Vitro although there was hope it did When Cine is used now it is for its intended purpose which is blood flow. As it relates to the brain it has to do function in the brain ventricles which is somewhat related to CSF flow.
I think I read in one of the previous posts on this thread that if symptoms come on due to positional activities (IE: bending head down, looking behind), it’s possible your symptoms are related to instability versus the Chiari.
If so, how might one get checked for instability? One thing I have found while driving was when I had my car pillow positioned so my head is lifted off my shoulders and properly aligned (not in a forward head posture) it relieves a lot of discomfort in my neck shoulder and breathing but nausea, brain fog and many other symptoms still reside. Does this sound like instability issues?
I just imagine the cerebral tonsils being squished since they are herniated when in positions like bending the neck or looking up.