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.
@gabby_jazzypants I love your outlook on therapy and have been looking into a Concussion Clinic for therapy for Hope. Also, art and music therapy have been very helpful in helping her cope with not only high pain levels but also the anxiety of such a drastic life change at only 11yo.
That is kind of you to say. I have learned a lot about what is truly helpful with Chiari. Good luck in navigating a different medical model - also know that not all concussion treatment centers are created equally!