Chiari Online Support Group

Chiari Severity Index

So I just read about the Chiari Severity Index on this site…

Pediatric Chiari plus multiple diagnoses in a posting by Dr. Trumble

My understanding is it gives medical folk an idea on how patients will report improvements if they have surgery given their current Chiari presentation of symptoms.

          Have a look at the images.

An operative phrase is “myelopathic symptoms”. If a patient reports myelopathic symptoms, their reports of self-improvement decreases post surgery.

I did not know what myelopathic symptoms are. John Hopkins has a decent summary. Basically symptoms that occur when the spinal cord is compresssed.

I have a lot of thoughts emerging from this information and the current approach towards managing people with Chiari as evident on MRI and reporting these Chiari (or otherwise) headaches and myelopathic symptoms. Also how Chiari folk with more symptoms are managed after surgery when the Index indicates the likelihood of poorer self-reported outcomes.

I am thinking that more education is needed all the way around.

Thoughts?

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Although I am just beginning to learn about Chiari (a great deal of which I’ve learned through this forum and I am ever so grateful for it) I would definitely say there is a great deal of education needed in the medical community as well. It saddens me that so many doctors have disregarded Hope’s symptoms and struggle and are very quick to attribute much of her issues to psychological issues rather than her Chiari diagnosis. While I agree that she is certainly presenting with anxiety and depression signs, who wouldn’t after 6 months of terribly chronic pain, little sleep and an entire life changing experience— not to mention having doctors tell her “it’s all in your head!”. I will not stop educating myself nor will I simply give up this battle. I am truly grateful for this site and all the members who so openly share their experiences! I pray for each of us every day, may God continue to bless and empower us all!
As for the index itself, I am honestly not surprised to hear that surgery may not be successful in Hope’s case. She has definitely continued to present with symptoms of compression and from experience, I know that nerve damage is difficult to recover from with an expectation of returning to “normal”. I would really like to know where else to turn for help with her symptoms if surgery is likely not going to help her. I know @gabby_jazzypants you’ve shared a lot about other treatment options and I thank you for that. There seems to be a great deal that is yet to be discovered as it pertains to Chiari and finding a new “normal” for the people diagnosed.

I think that it is important to note that the index categorizes how patients SELF-REPORT their symptoms after surgery. I would gander that upon MRI imaging, neurosurgeons would say that the typical Chiari surgery is a success from their point of view. We as lay people have to be careful when a doctor says that there is “permanent nerve damage”. Sometimes that is the case, but sometimes it is just that a neurosurgeon does not have the knowledge base in their wheel-house to address the remaining or newly emerged issues.

For example, it seems that I will have permanent hand weakness as a result of Chiari’s compression on my spinal cord - Okay. According to doctors, I should have had permanent balance and dizziness problems as well. It started after surgery, every day all day. I saw many different doctors and physical therapists who all said that they could not help me. At the nine month mark, I found new brain/vestibular processing exercises that fixed the balance and dizziness right up. I can climb stools and skate which is more than what was expected of me. I was able to retrain my brain to process vestibular information correctly and give good information to my brain so that it did not get confused. Sometimes our brains can figure it out after surgery, but sometimes it needs help.

A surgeon’s job is done post-surgery and now it is time for a patient to move along. Unfortunately, there are not so many options to ACCESS even though they do exist. We see so often that symptoms, doctors cannot explain nor address, are relegated to psychosocial issues - “Somebodyelse’s problem”. Not very helpful for the patient. What I would like to see is more understanding on the part of doctors that other treatments are necessary and to guide the patient in that direction rather than dismissing them as crazy.

You are right in that I have listed many different treatment options that work for Chiari people but also other people who find themselves with baffling pain, incisional pain, visual processing difficulties, balance and dizziness challenges, and many others. The point of the Chiari Severity Index, in my mind, is that people who are more affected with Chiari symptoms have more problems after surgery; it does not say that they cannot be helped. What is necessary is a shift in mindset and to go beyond a surgical treatment.

I strongly believe that the compression on the spinal cord and the cerebellum needs to be removed by surgical means in order for Chiari folk to make any head way in symptom management and improvement. Once addressed, symptoms often remain. I have found that symptoms that rely on brain processing can be addressed through the various therapies I have listed. We forget or are not told that Chiari affects how our brain works and processes the information from our bodies.

After Chiari surgery, we can retrain the brain to work better, but we need help, support, and direction to do it. It should not be a solitary Herculean journey wrought with false hope or dismissal. Treatment after surgery should be a matter of course and well-laid out. Therapy for balance, therapy for visual processing, therapy for that crazy head pain that does not go away.

After a knee replacement, it is understood that the patient will have to under-go physical therapy to regain mobility. People with poorer mobility before surgery need more assistance than people who are young and spry. Chiari treatment post surgery should be no different.

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I completely agree with your retraining the brain thoughts. I can already see, as just a mom (not actually the patient) that the Chiari is effecting the way her brain processes information. It’s actually so obvious to me that it astounds me that others don’t think this way. Even with just small things… for example, Hope often says that she feels like she is having trouble breathing or “getting enough air”. After seeing a cardiologist and having an echocardiogram done, we know that essentially there is nothing wrong with her heart or lungs, however the problem still persists. Do I tell her that there is nothing wrong with her breathing and she is fine? No. If her brain thinks that she is having trouble breathing, then, in my humble opinion, she is going to have trouble breathing. Her oxygen levels may be exactly the same as they were before the episode and she isn’t in physical distress but regardless, she feels the way she feels. I fully believe that it is a processing issue in her brain. There are many other examples I could use such as her visual issues but they all point back to the same thing. The organs themselves are healthy and operating as they should, if there is still an issue it must be with processing information from her brain. Our journey is just beginning so we have a long road ahead of us. I still have a lot of research to do and a lot to learn. I thank you for your input and always informative responses. I’m learning from you so I can better understand and help my daughter. Honestly, I would just love to take it away from her altogether. I’m not sure why she was given this journey yet but I am sure that her strength is inspiring, as is yours. Thank you :pray:

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It is so tough with Chiari presentation and seeking help from physicians. Once the discussion is focused on mental health, it is difficult to move away and to focus on the physical body. i jotted down a separate post…

Continue with your journey of seeking answers and assistance

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I am three weeks post decompression. I have some dizziness. Where can I find out more about the vestibular exercises? I think I could benefit from those! It makes complete sense that you would have to retrain your brain.
Thanks

@Creid245
https://www.chiarisupport.org/t/dizziness-and-chiari-information-self-help/8793

Check out this post from @gabby_jazzypants, it may hold some of the answers on the exercises you are interested in.

Exactly what I needed! Thanks!