Chiari Online Support Group

Chiropractor after diagnosis

Hi, I was wondering if there were any success stories for symptom relief with Chiropractors after being diagnosed with Chiari Type 1? Has massage, red light therapy, acupuncture, or any low velocity adjustments or treatments helped anyone with their symptoms? I did some treatments with ultrasound, some adjustments, and massage for a couple of months, but I am hesitant to continue because of the expense and fear that things may get worse. I always felt better after leaving the chiropractor, but I got very nervous when they popped or cracked my neck and back.
They are aware of my condition and say the Chiari is c1-c3 and my other cervical issues are c4-c6 and should not affect the chiari. Also, I have TMJ problems, a Tarlov cyst posterior to S1, curvature in my lumbar region, and disc bulges and arthritis. I do not know what the root cause is, but this is very frustrating not knowing what to do. All doctors are out of network and do not know anything about Chiari from what I can see. Also, the neurologist who ordered my MRIs in Feb. 2019 told me that surgery should be the very last option because I could be walking around with my head forward the rest of my life.
Ii wish there was an expert doctor who could give some advice out there.

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Hello @kkdaycare75 and welcome! I am not sure if you are aware yet but there is an excellent search tool (the magnifying glass :mag:) on this site. You can search for specific questions or subjects that have been previously posted about. I just searched chiropractor and found several posts like this one Chiropractor Neurologist
Educate yourself and read as much as possible. There is so much valuable information on this forum alone. Also, please don’t hesitate to ask questions, it’s been my experience that the members here are very willing to share their experiences. This forum has been a blessing to me. I hope you find the same. God bless you!

I started to do a search yesterday and will finish looking at the rest of the results today.

Thank you!

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Dear @kkdaycare75 -
I would NOT continue having adjustments done that involve any part of the neck. I had occasional adjustments done starting in my 20’s through age 43 before I was diagnosed with Chiari 1 with a 17mm herniation. That last adjustment at age 43 is what sent me to the ER and caused severe neck pain, seizure, numbness throughout my entire body (where it had been one one side before). I was then diagnosed with Chiari I and also misdiagnosed as having MS. I am convinced the chiropractic adjustments over the years made my herniation worse (and my Chiari doctor concurs) even though I would get mild temporary relief from some of the upper shoulder / back pain I had been experiencing. I had decompression/ reconstruction surgery 6 years ago and have done physical therapy but would not ever consider going back to a chiropractor.
Physical therapy was a big part of my recovery from surgery and worked well for me. I wish you luck in finding symptom relief.

That is horrible you had that experience. I am so sorry, and thank you for sharing. My chiari extends to C1-C4, and they were making adjustments to C5-C6 where my disc issues are. I would always feel better after leaving, but I was even more sore when waking up the next day. I thought maybe that was a good thing, but I have not felt any extended relief. I also have tmj problems, and now I am woried about getting jaw adjustments and even back adjusments for my scoliosis. Did you ever get adjustments anywhere else and had problems? I keep reading periodic adjustments can improve CSF flow, etc. I have been taking a break trying to manage it on my own before going back. I guess to be on the safe side I should stick with ultrasound, light massage, ice, heat or anything that does not involve the neck adjusting. I hope you have felt better after having surgery and continue to get well.

I highly discourage using chiropractors/adjustments for any type of symptomatic relief. Relief is temporary with a possibility of aggravation and damage that is too great, regardless of the spinal level involved.

I enjoy a temporary relief of symptoms as much as the next person. It is great that just going to any health care practitioner who touches a client and listens to a client is going to help them feel better, at least for a little bit. Unfortunately, my finances are very finite and I have had to eliminate massage therapy, acupuncture, cupping, machines that plug in, chiropractors, and others. They do not fix Chiari symptoms and I cannot afford to pay so much for such a little amount of “feeling better”.

What I do have is a heat bag, balls to do self-massage, walking, music, and kids and a husband to hug. I pet dogs when I see them and enjoy nature. Every once in a while, I compile a list of things that make me feel better and then do one of them when I need to. Make your own list. What is on it?

Having Chiari really sucks and it is tough when health care professionals do not have the answers to get rid of Chiari symptoms. But, I can no longer pay for hand-on “feel good” treatment. I have to pick and chose what is actually going to change my brain and change how it works. That is where I put my energy, my time, and my money.

As an aside, might be wise to consult with a neurosurgeon as neurologists, family doctors, and other doctors know very little about Chiari and can only offer medications for the symptoms and ordering new tests.

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I first started going because in addition to the Chiari, I have some scoliosis that is affecting my alignment, plus disc bulges, arthritis, disc degeneration. One leg feels longer than the other, hips and ribs a little uneven, foot issues with arches, and it is hard to tell if it starts with the chiari or stems from the scoliosis or feet? It is very frustrating, but it sounds like it could just make things worse, and I should save my money to consult with a neurosurgeon.

I am doing a lot of research on home I can do things at home to address the scoliosis, and I have heard the massage balls are a good idea. I appreciate the advice and hope you are getting a lot of symptom relief.

Yes, thanks and good luck to you to with figuring things out.

I was diagnosed about 15 years ago, saw numerous neuros all had different ideas. The last one I saw, whom I trusted and came highly recommended suggested Chiropractic or acupuncture. By this point I had seen so many different types of drs and all types of meds and CT Scans and MRI’s and nothing helping the headaches, I said what the hell, why not. I saw a chranial sacral massage therapist 1st, she happened to be in a chiro office. She asked me while doing my massage if she could ask him questions and bring him in, he came in and to my surprise when was in school studied chiari and did his final papers on it. I started to see him and her and within 1 week I was off of all meds and for the first time in I don’t know how long, I did not have a headache. Such relief. I still see him for maintenance, he knows my headaches are worse when I am tense or stressed so he works on all of these. I also get massages at least every couple months and together so far I am surgery free.

That is amazing, and I am glad you are doing so well! I take it this cranial sacral massager is nowhere near the Dallas area where I live?

has anyone gotten any relief from dizziness via cranio sacral therapy or the SOT?

I received no benefit from dizziness when I had craniosacral therapy. It actually returned dizziness to my symptom list for a few days. It resolved on its own and I did not have to do any primitive reflex exercises to settle it down.

However, it was the finishing touch for my head sensitivity (post-surgery). I would not hesitate to support post-surgical Chiari folk giving it a go with someone very advanced in their training. But, I do think that motor imagery issues, muscle trigger, motor-control, and neurodynamic issues be sorted out first. I would not recommend it as a first-line treatment post surgery.