Who to see about alignment of neck

Hey peeps

So I’m 8months post Decompression and over all I’ve been feeling really great how ever in the past month I have had a couple of days where my neck and head have been hurting so much that I end up sleeping all day. I think it’s got to do with neck muscles and the alignment of neck but I’m not sure who I would see about this as my current physio doesn’t know that much about the surgery and we can’t see chiropractors so I’m not sure if there is specialist out there who deal with this specifically. Does any one have any experience in post op rehabilitation and who did you see?

Sounds like you need a physiotherapist with a more complex skill set! Not every physical therapist is the same. Chances of finding a physical therapist who has seen lots of Chiari folk is about nil. Of course, if your current physical therapist believes that there is actual cervical joint dysfunction, they should be able to help you regardless of their knowledge of Chiari. If they do not think that there is a joint dysfunction then please throw away the idea of “neck alignment” as it is a made-up term anyways.

If a mildly better old-school physical therapy does not help, what could potentially help is someone with experience dealing in head trauma, brain surgeries, Complex Regional Pain Syndrome, amputee phantom pain, or concussions. These types of conditions bring about the same concerns as wonky Chiari pain presentations and require similar complex treatments for head and neck pain. I do think that it is important that we not think of ourselves as unicorns in the healthcare world! We can piggy back off of other people with medical conditions (that are more common and have higher rates of treatment options and success!) who require the same types of rehabilitation as us Chiari folk do. I think that Chiari folk would benefit greatly from high level physical therapy assessment and rehabilitation post-surgery as a given but are rarely offered it to the degree actually needed. People with a knee replacement get rehab, why not people with brain surgery! A little bit of neck exercises does not count and often just tends to aggravate the Chiari person which tends to turn people off of physical therapy. “yeah, I tried physio but it did not help and really made things worse”

I cannot pretend to know what exactly is your problem but do know that assessment should narrow down the possibilities. I know that I required much intervention post-surgery, and it was a chore to find what I needed.

These are the big therapy treatment types I required.

graded motor imagery to retrain my brain’s processing abilities of incoming body sensory information

motor control exercises to relearn proper movement patterns for my neck and shoulders

primitive reflex integration to normalize those movements and regulate muscle tone

trigger point release of muscle so that muscles could retain those motor patterns (OMG the scalenes!)

body image retraining (not if I think that my body is fat when it is thin but knowing where my body is in space, how much volume it takes up, and being able to picture my body and its parts in my head through a variety of different positions)

I do think that it is important to understand the nature of Chiari. It is a physical deformity that affects blood vessels, neural in/out puts, brain function, and brain processes. Pre-surgery and continuing post-surgery, our neck and postural controls work very hard to minimize the effects of that deformity on our brainstem structures - avoiding extension, keeping the upper neck still when the rest of the body is otherwise moving… That is a lot of strain on those little muscles and they do not necessarily return to normal function after surgery.

Wonky brain function can be retrained. It might not return to normal but can definitely improve and consequently decrease pain levels in a more permanent way.

Everyday I am grateful for the therapies I have found and performed. Each one has given me back abilities and tolerances that I did not have before and which were not coming back with the standard rest and time. Nor did medications fix any problems. Just gave me new side-effects to deal with.

Unfortunately, we live in a world where surgery and medications are often viewed as the sum total of treatment for complex issues surrounding a complex organ like the brain. Surgery is great for when Chiari symptoms are present so that things do not get worse physically and neurologically, but it does not mean that the brain will reboot to normal function. In steps brain rehab!

These long posts get carried away. It is not just a response to a straight forward request for insight on head and neck pain post-surgery. I just find it frustrating that Chiari folk are forced to settle for inadequate medical interventions or none at all and will happily discuss small-time symptom management strategies as that predominates what is on offer. I would love a pill that made everything about Chiari better. I am sure that others can share their experience with medications in more detail. It is what is more common, available, and accepted. I just talk about crazy rehab therapies that no one knows about, do not fix problems quickly and easily, and are probably just placebo anyways. I am starting to ramble on emotionally about this but others ramble on too, and I guess it is my turn. I find it so frustrating that medical solutions are out there but not available nor does the average doctor/patient think them viable. I guess I am the unicorn for having found rehabilitation that fixed a few crazy Chiari problems. Yay me! But, ultimately I want to say ‘do not settle for garbage medical intervention for real medical concerns’. Average healthcare professionals just do not know how to help.

I bring it back to the question at hand and hope that your head a neck pain just needs a step-up of physical therapy quality over what you are getting now, and that you do not need to venture down a more complicated therapy path. Do know that they do exist if you need one or two or all that I mentioned.

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