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.
I’ve also experienced that when looking up or turning to look behind me my neurosurgeon did say it is related to and not much he would be able to do.
Ugh when a doctor says there’s nothing they can do
I know I’ve heard of surgeries for craniocervical instability. But I’ve also read that it is hard to diagnose that bc you would need to do very specific movements and if the X-ray technician doesn’t catch it or place you in proper positions you wouldn’t see the instability.
I initially replied to this thread when it first came out. I pursued the vertebral artery idea to a dead end and a farewell handshake with the neurosurgeon (what else did I have to go with!), saw a neurologist who declared that I had vestibular migraines (do not fit the criteria based on a couple of second opinions), was dismissed by my doctor as having fibromyalgia (again do not fit the criteria), … you see the picture. I was not getting anywhere.
Here is what I have found out. I do have increased flexibility in some cervical joints and stiffness in others. I do not use the terminology of “instability” as that is a trigger word of fear for people and does not adequately describe what is happening in the spinal column. The word “instability” also tends to paralyze people into thinking that they can do nothing about it except fixating surgery. There are many steps to try before the last resort of surgery.
I had habits of movement that inappropriately stressed some tissues while limiting movements in other areas. I was assessed by a physical therapist skilled in the assessment AND treatment of motor control therapy. This is the normalizing of movement patterns. Once I was aware of the faulty positions and what normal movement felt like, I was able to apply this understanding to the movement exercises. Now, I move my neck differently. It can be done.
I have worked on upper, middle, and lower cervical movement patterns. I am currently adding in shoulder normalizing patterns. To find someone qualified, they need to know what these terms are!
I also worked on neurodynamic exercises. This is the flexibility AND desensitizing of nerves. Initially, I worked distally (started with my fingers) and worked up my arm to the neck. This concept of assessment and treatment originates in Australia at the Neuro- Orthopedic Institute - a fine center of research and treatment application for physical therapists. Once at the level of my neck, it proved to be too sensitive (lots of pain and cognitive blunting if I moved it) so I had to back off and focus on a third form of treatment.
To get into the therapy that my head and neck needed, first I had to straighten out how my brain was perceiving and processing stimuli. A long-term consequence of Chiari was that my brain was processing movement, touch, pressure, etc in the head area as pain and resorting to cognitive blunting. I still may have actual brain damage as an underlying condition but cognitive blunting should not be brought on by head movement!
To sort out this sensory disconnect, I did graded imagery exercises - again from the Neuro-Orthopedic Institute. These are excellent for pain and conditions that do not make sense to traditional understandings of pain and anatomy. The brain and how it processes input is the source of our experience of pain. When there is no mechanical source of pain, and doctors are scratching their heads and thinking that yours needs to be examined, it is time to look at how the brain is processing information.
Chiari brains can and often do get processing wrong and this needs to be normalized through a long period of treatment to normalize the brain’s experience and how it is processing stimuli that should not cause pain. In short, the brain needs to work right.
So, graded motor imagery, motor control exercises, and neurodynamics are where it was at for me. These treatments have steadily improved my baseline function. They are not faith-based forms of healing but well-situated in research and long-term gains.
Am I pleased with how long it takes? No. But my condition has continued to improve long past the date of when doctors said I would have my maximum recovery. Am I normal in terms of function levels? No. But the list of things that I can do continues to grow.
I have always sought treatments that had an indication of improving my condition for the long-term not temporary fixes. This is what I have found. I would implore people to ask questions and explore these options. I must admit that I weary of people choosing to explore dead-end treatments with no promise of improvement. Please reach out and expect more from your medical community. Remember that if health care professionals do not have the knowledge-base that you require as a complicated Chiari client, move on and continue to seek others who might. it is truly a difficult journey of finding those who can actually help! What will your next step be to help yourself be the best that you can be?
hi–with chiari isn’t there often compression on the brain? I have been thinking that is why I get cognitive issues because it gets worse after Ihave been sitting and gets better after I lie horizontal for a while—how do we know if its from compression or needing to do some PT and OT?
In general this can be very difficult to establish conclusively. I say this as I have a condition known as obstructive hydrocephalus where, in very basic terms, the fluid produced within the skull cannot drain out. This caused compression of the brain itself. To drain the fluid I have a plastic tube called a shunt surgically inserted into my brain. This has reduced the pressure on the brain and had been working fairly well. But the initial shunt failed and a new one had to be inserted. Since then I have had no end of issues. I have seen all sorts of practitioners from physiotherapists to opticians to acupuncturists without any great relief.
It was only yesterday I had an appointment with the neurosurgeon and for the first time EVER I had a neuro admit that they do not know everything about how the brain functions. Her actual comment was '…some can have surgery and recover primarily unaffected and yet others can have all sorts of symptoms and we do not know why…"
My advice to you would be to follow through with the PT and OT but to do so with a very open mind. Look, you may find the key to your concerns, but do not go into it with any great expectations. If it helps, that’s fantastic. If it doesn’t, well, you tried. Having expectations, only for those expectations to fail, can be soul destroying, so go into it with no expectations at all, you will save yourself a lot of anguish by doing so.
P.S. I didn’t do this and had a real battle with myself in accepting the reality I now have to live with.
Merl from the Moderator Support Team
Typically, an MRI will reveal a structure abnormality of the brain. In Chiari’s case, if there is a cerebellum hernia compressing the spinal cord and in turn being compressed. Throwing in cerebrospinal fluid complications is another structural complication. So often the case, once surgery has been done, with no indication of a structural concern remaining, neurosurgeons and neurologists give you a hand shake and say “Best of luck!” when there are still struggles with cognitive concerns and neurological maladapations.
An MRI rules out structural problems that may require surgical intervention but does not reveal how the brain has adapted or been affected by longstanding compression. It is just like how current standard imaging does not reveal the damage of a concussion even when health care professionals (and patients!) know that there is damage to the brain’s function.
In my previous marathon posting for this topic, I listed motor control therapy, neurodynamics, and graded motor imagery as therapies that continue to improve my function. I now have added in 3-D vestibular therapies to assist with fatigue that I experience when my head and body are in different positions. While I still experience cognitive issues with head positioning, it is dramatically reduced in frequency, recovery period and severity. Sometimes my brain is actually sparky and not dull and plodding.
Unfortunately, the average person on this site has experienced mediocre physical therapy at best with old, tired exercises trotted out in efforts to assist the complex client that has Chiari. Not going to do a thing. In my case, it made things worse both physically and psychologically. I saw a number of specialized vestibular therapists who said that they could not help me before stumbling across a more appropriate form of vestibular therapy.
What spurns me on to continue with new therapies is that I know that the brain can change. I know that my brain has changed - first for the worst and now for the better. Any therapy that I approve for a trial run has to address the brain’s function. Chiari has changed and damaged my brain, but the brain still has plasticity. My brain still has plasticity as so does everyone’s on this site. Any therapy that changes the brain takes a long time, a lot of effort, and great difficulty in finding people to help.
thanks i hope to write you more later. I did see your good posting about the specific type of PT/OT you got. sounds cool. yea I had 2 concussions within 6 mo of eachother dec '17 and june 18–neither one a car accident , first one a large humidifier fell off closet shelf into side of head and then the next year someone threw an Ultimate frizbeeaccidentally into other side of head --I had to go to ER taht time and attend OT/PT for 7 mo.s. The OT was mostly helpful but they didnt understand my neck well enough to really help correctly. I gotthis PT book on EDS by a NY guy and tried doing his exercises but made mistake of doing some while my neck was in period of worse instabiity post concussion and it made my neck subluxate more and since then (dec) have felt more like compression like maybe a shift casued brain to be more compressed. i already couldnt sleep on back because get too spacy next day and just made all that worse
fortunately the feeling of intense instability has sort of remediated (but not that feeling of compression and disassociation that comes on if i sit too long etc) I feel like i would have to travel and pay out of pocket to see someone who can help me figure it out and right now i just want to live like i do with lying down intermittently and the OT they taught me post concussion was actually really helpful. if things get worse I was thinking of trying to get a dmx scan and maybe sending that to Dr Bolognese or Dr Henderson or Patel on east coast along with my 2017 mri for an opinion–altho i should probly get an updated mri but I hate that hassle–but will do that if things got worse. but just trying to do my life right now til i can’t
I can understand that seeking assistance takes a tremendous amount of effort and the high possibility of disappointment.
Please know that the exercises I discuss are not selective for Chiari only, they are very much used for concussion as well among many other conditions. In treatment perspective we are not unicorns. This is good as then we do not have to rely on mythical Chiari specialists to assist.
Brain difficulties are brain difficulties regardless of the source and those health care professionals who can assess these difficulties can guide a treatment plan.
I seems that you are hesitant to seek out assistance at this time and I understand that. My own journey in rehabilitation has been cyclical, as well, as I gather knowledge and understanding and break out of thinking patterns into new ideas. We can only go at our own pace. Please be sure to reach out for assistance when you are ready - be it here on the website or within your current medical field.
PS I have the cognitive decline if sleeping on my back too. I used to have a tennis ball sewn into a pyjama top that helped to flip me over. Also helped with my positional snoring which my husband enjoyed.
Dear Trees! What you describe is the story of my life. I had everything ruled out, including stroke and epilepsy. Then 3 years ago my rheumatologist LISTENED and said, “This sounds like Chiari.” Of course I said, “Sounds like WHAT?” At age 73 I’m not going to get a Chiari diagnosis confirmed or unconfirmed, but my dramatic memory loss and spatial disorientation events (some lasting hours, some days) are clearly triggered by mechanical events: jumping, level-changing (including airplane travel), falling on my butt, having a whanging orgasm, even changing my breathing side in lap-swimming. I think we Chiari-like folks are very sensitive creatures. Needless to say, my crazy modern dance days are over. I have to say that knowing about Chiari and understanding that this is mechanical has been really liberating. Everyone I know and love understands that if I present a certain way you take my car keys, give me a valium or two, and put me to bed and I’ll probably soon be myself. I feel for those whose “brain-fog” (I call it “brain absence”) is accompanied by pain.