Most Chiarians go to see a surgeon with an expectation of them being knowledgeable in their field. However, while they might be a surgeon with a specialty of neurologically-based surgical procedures, their knowledge of Chiari and its comorbid conditions might not rank high in their practice. Make the most of your initial appointment by interviewing them and what they really know about Chiari Malformation. Be cautious of inflated success rates, as the scale on their decompression success/failure rates are not based on how their patients feel afterward, it is based on if they were successful with the aspects of the surgery (bone removal, opening the dura, adding the dural patch/graft, laminectomy). 

 

HERE IS A LIST OF CHIARI QUESTIONS WE RECOMMEND ASKING AT YOUR FIRST NEUROSURGERY APPOINTMENT:

 

General Questions:

  • In an average month, how many Chiari decompressions do you perform?
  • What do you believe causes a Chiari malformation?
  • Looking at my brain scan, is any part of my “brainstem” herniated (below the posterior fossa)?

 

Intracranial Hypotension (low pressure) Questions:
*Article to help you understand CSF Leaks & Intracranial Hypotension prior to your appointment.
If you have SYMPTOMS OF LOW INTRACRANIAL PRESSURE and/or suspect a cerebrospinal fluid leak, we recommend asking the following questions:

  • S.E.E.P.S.
    • Looking at my brain scan, do you see any Subdural fluid collections?
    • Looking at my brain scan, do you see an Enhancement of pachymeninges?
    • Looking at my brain scan, do you see an Engorgement of my venous structures? Should we do an MRV to make sure?
    • Looking at my brain scan, does my Pituitary appear to be enlarged?
    • Looking at my brain scan, does my brain appear to be Sagging?

If he/she answers affirmatively to any of the above S.E.E.P.S. questions, ask: 

  • What should be done to find/repair a potential leak?
  • Are you aware that it is common for CSF Leaks to not show up on MRI?
  • Are you willing to do a CT Myelogram and a  digital subtraction myelogram if I develop symptoms of a leak and none can be found on MRI?
  • Are you aware that it can often take multiple epidural blood patches to try and seal a leak, and sometimes when a blood patch fails to work, a surgical dural repair might be necessary?

 

Intracranial Hypertension (high pressure) Questions:
*Article to help you understand Intracranial Hypertension prior to your appointment.
If you have SYMPTOMS OF HIGH INTRACRANIAL PRESSURE, we recommend asking the following questions:

  • Looking at my brain scan, do I have cerebrospinal fluid in my sella turcica (Empty Sella Syndrome)?
  • Looking at my brain scan, do you see any evidence of my optic nerves are swollen (papilledema)?
    • If so, should I be referred to a neuro-ophthalmologist?
  • Looking at my brain scan, do my lateral ventricles appear small or flattened?
    • If so, do I need to have my pressures checked?
    • What are the symptoms of a CSF Leak, should one develop?
      • What is your plan of action if I should develop these leak symptoms?
      • Are you aware that it is common for CSF Leaks to not show up on MRI?
      • Are you willing to do a CT Myelogram if I develop symptoms of a leak, and none can be found on MRI?
    • Should a leak be found, are you aware that it can often take multiple epidural blood patches to try and seal a leak?

 

Tethered Cord Questions: 
*Article to help you understand Tethered Cord: Sorry, Coming Soon.
If you have SYMPTOMS OF TETHERED CORD, we recommend asking the following questions:

  • Looking at my brain/cervical scan, does my brainstem appear to be elongated?
  • Looking at my cervical scan, does my spinal cord appear to be stretched?
  • Looking at my lumbar scan, does my conus reach my L2/L3?
  • Looking at my thoracic and lumbar scan, does my spinal cord appear to be pulling to the back, or one particular side?
    • If so, should we do a prone MRI to see if it has actually adhered to that side?
  • Looking at my lumbar scan, do I appear to have fatty tissue inside the epidermis?
    • If the answer to any of these questions is affirmative, do you suspect that I have a tethered spinal cord?
    • If so, should we plan for a Tethered Cord Release before or soon after decompression surgery, so the likelihood of a failed decompression is reduced?
    • If I have urological issues, can I get a referral for urodynamic testing to rule out any other potential causes of my urological issues?

 

Craniocervical Instability (CCI) & Atlantoaxial Instability (AAI):
*Article to help you understand CCI & AAI prior to your appointment.
If you have SYMPTOMS OF CRANIOCERVICAL INSTABILITY or SYMPTOMS OF ATLANTOAXIAL INSTABILITY, we recommend asking the following questions:

  • Looking at my brain/cervical scans, what are the measurements of my clivoaxial angle and Grabb-Oakes?
  • Do these measurements meet the diagnostic criteria for Craniocervical Instability?
  • Looking at my flexion and extension imaging, how many millimeters of translation are there between flexion and extension?
  • Does Chamberlain’s Line cross my odontoid? If so, does it cross at a level that would indicate Basilar Invagination?
  • Looking at my rotational imaging, what is the percentage of uncovering of the right and left articular facets on rotation?
  • Do the percentages from my rotational imaging meet the diagnosis criteria for Atlantoaxial Instability?

 

IF A DIAGNOSIS CRITERIA IS MET IN ANY OF THE ABOVE, WE STRONGLY RECOMMEND THAT YOU WAIT ON DECOMPRESSION AND PURSUE THE TREATMENT OF SAID CONDITION(S) AND THAT OF EHLERS-DANLOS SYNDROME, AS EACH OF THESE CONDITIONS CAN BE PATHOLOGICAL TO AN ACQUIRED CHIARI AND EACH IS A STRONG INDICATOR THAT A CONNECTIVE TISSUE PROBLEM EXISTS. 

*The questions in this article will periodically change, as we are able to expand our recommended question suggestions.

 


*Original version released September 2018, revised November 2019.

 

 

Have you written something that you think would be of value to the Chiari community? Consider publishing it with us! It might be exactly what someone else needs to hear for them to make it through their next mile of the fight!

Not all of our pieces are technical pieces. We want articles that are encouraging, uplifting, and even those that might be seen as controversial. We feel it is both necessary and prudent in our fight to talk blatantly about what Chiarians go through at the hands of our medical professionals and insurance companies alike (in a general sense), but because we don’t want anyone to get “blacklisted” by those they must do business with, we have certain protocols in place to help protect the identities of authors that do such controversial pieces. Please see our Author Submission Agreement and ensure that you are agreeable to the terms before submitting your article for consideration. We are very particular about violating copyright laws, so the signed agreement is required before publication.

We have limited the character count to 10,000 characters including spaces (that is just over 2 full, typewritten pages). Anything more than that lessens the chances of it being read by our readers. (If you desire to go over that, it will take approval from our editor. Submit what you have with the limit and when she contacts you about your story, you can request what you would like to add that makes it exceed the limit.) So think carefully about what you want to share and start writing!

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International list of suicide hotline websites
https://en.m.wikipedia.org/wiki/List_of_suicide_crisis_lines

http://www.crisistextline.org

United States Suicide Hotline numbers links
http://www.suicide.org/suicide-hotlines.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Bridges are built as a means to assist people in getting over the things that obstruct their path. We are constantly facing obstacles when it comes to our health, so we decided to build a bridge! Chiari Bridges is a non-profit network built by Chiarians for Chiarians. Our goal is to provide information, substantiated by published studies, in a way that is easy to understand. We encourage readers, to not only read our articles, but look up every study for themselves and read that too. Print it out and sit down with a highlighter; read it as many times as necessary until you understand; then use it to talk to your doctors. Our doctors are under no obligation to read our articles, but they should be willing to read officially published studies from journals, especially those specific to their profession. As many of our authors are patients as well, all authors sharing original pieces will be writing under pseudo-ghost names, to protect them from being black-listed by their doctors. Chiari Bridges is not affiliated with any physician or medical group. You should in no way use this site as a replacement for diagnosis, treatment, or medical from a qualified medical professional. The information provided on our website is strictly for educational purposes, in order to help further the understanding of Chiari, and its associated conditions. Our goal is to share our collective experiences and the information we have gathered, with those in need of answers, that it may increase your knowledge and guide you in conversations with your doctors.