Hello! I am new to the group and really didn’t know where to start. I was recently diagnosed with chiari 1 and reading and research leaves me in tears some times because it is connecting dots I’ve been trying to for years. With that being said during research talking to doctors, meeting with my neurologist, and reading forums I am terrified that the doctors will not look at my symptoms as a whole but treat everything separately taking more time to get relief. I am learning that most medical professionals are not familiar with chiari and that is disheartening In many ways. Anyway, that leads me to my questions about symptoms, has anyone experienced painful muscle knots in their back around the shoulder blades? I see a chiropractor regularly and a physical therapist assistant and they both work on the tension and these knots that run from the back of my head down my shoulder and between my shouder blades. I can get temporary relief but never full long lasting relief. The tension is painful, much less the knots and that’s just one of the many many symptoms I have questions about but I suppose I’ll start there. Thank You , Terra 
I would say tension in the neck, shoulders, and upper back are not unusal with Chiari. Remember, your brain is swelling and even though the brain itself doesn’t have pain sensors the rest of your body certainly does. The fact that part of your brain is fundamentally in the wrong place is going to create unlying tension in your body.
azurelle
Thank You! I hadn’t thought about it that way.
Yes I had those symptoms. It’s been a year since my decompression surgery and now I rarely feel that pain. Good luck.
Tnl3,
Please, please, never have the chiropractor adjust your neck as part of your treatment for the knotted muscles. I had similar pain and knotted muscles that I sought treatment for from a chiropractor for about a decade. This was before a Chiari diagnosis. I had back and neck adjustments that I’m sure worsened my Chiari herniation (ended up 18 mm by the time I was diagnosed). I underwent decompression surgery that has helped alleviate a lot of the muscle knotting. PT has helped tremendously as well.
Thank you for replying! Would you mind if I asked how much of a deviation you had prior to surgery?
Thanks!
Terra
I have been wondering if it was ok for me to go to the chiropractor. It seems as if it definitely isn’t the best thing to do. I have been doing some PT. Thankfully the chiropractor also has PT in the same office so the work on the knots with stretches and a little soft tissue work too.
My cerebellar tonsils were 9mm below the foramen magnum. I presume that’s what you mean by deviation.
My 12 yrs old daughter has a 14mm chiari malformation and syrinx from her c4-c7 measuring 1cm in width at c6. The neurosurgeon wants to do decompression surgery as soon as she loses 8 more lbs, he wants a total loss of 20lbs before he will do her surgery . She has had problems with anesthesia in the past and he is concerned about lung function and her being overweight. I am terrified about the risks of surgery and the risks of her not having surgery…in need of some encouragement…
It is. Thank you 
Stephanie,
I can’t imagine how terrified you must be. I will be thinking of you and your daughter in the coming weeks and months. I hope everything goes well for her!
tnl3,
Thank you. All i can do is continue to pray and believe that God will work everything out for my baby and give me the strength and courage to keep her positive through all of this.
I will Praying for you both!
Thank you
I have had a lot of problems with knots too and never connected the dots that they are related to Chiari. Thank you for sharing - I was just also diagnosed and new to this world. Best wishes to everyone - this is not an easy health issue at all. I wish more doctors were familiar with Chiari, which help so many of us to not have to wait years for the correct diagnosis.
Me too. It is really frustrating that a lot are
Not familiar with it. It is definitely something they need to spend more time on. Best wishes to you too!
This was something I had to a very severe degree in the years leading up to my surgery. I was decompressed 8/2017. I really started noticing the problems in my upper back / shoulder blades with pain and “knots” starting in 2007. By 2013 they were pretty frequent. By early 2016, almost constant. I did lots of things for temporary relief. Moving, as you are able and can tolerate it, really helps. I also starting getting Myofascial Release done monthly, which is a life saver for me. Too much pressure on the trigger points in a normal deep massage causes temporary relief but terrible rebound for me. After my surgery and the appropriate time to heal (you can’t really judge muscle issues for at least 6 months, I think), it’s much better now for me. I might get an irritated trigger point once every other month for a few days, rather than it turning into a major ordeal like it used to be. I do have to be careful, respect the muscles in my neck, be vigilant about good posture, work to strengthen the muscles by careful physical training, etc. Prior to surgery (if that’s an eventual option for you) I think you can employ the help of a knowledgable PT which it sounds like you have, practice as much self-care as you can in regards to relaxation/meditation/etc, develop a good occipital stretching routine, and try to get all the rest you can. Good luck as you work to figure out your path in treating this condition.
Thank you so much for your response and encouragement! It definitely helps!