Saturday, December 10, 2022

How to go about pursuing DBS for your SEVERE OCD... A brief/simplified & summarized how-to.

First steps:

  • Analyze your symptoms and make a determination on whether they are negatively impacting your life in a severe way, causing you disablement, causing loss of function at work/school/etc, are causing you to have a negative quality of life, etc. Consider seeking care from a doctor or healthcare professional (psychiatrist, psychiatric nurse practitioner, neurologist, etc) so they can professionally assess your symptoms and talk about treatment options with you. It is important that you establish care with someone.

  • View the criteria list for DBS for OCD so that you know ahead of time if you're even going to be in the ballpark for being considered for DBS.


  • If you don't meet MOST or ALL of the criteria, then talk with your psychologist, psychiatrist, psychiatric nurse practitioner, or neurologist and discuss further treatment methods. Have them do a YBOC score and a GAF test to analyze your OCD symptom severity. (These test scores will be an important piece of the criteria puzzle).

  •  If you DO meet all or most of the criteria, find a neurosurgeon and hospital nearest you that performs DBS procedure. Make sure they perform DBS for OCD. Some hospitals only perform DBS for Parkinson's and movement disorders. And some hospitals and doctors are prohibited by US state law from performing DBS for psychiatric conditions. Inquire about the procedure and ask about possibly scheduling an appointment with the neurosurgeon. (They may require a referral from a PCP).

  • Gather ALL of your health information and records from your doctors, psychiatrists, healthcare professionals, etc. And also all of your medication history and records – and present them to the neurosurgeon – if you have successfully scheduled an appointment with a neurosurgeon.

  • If the neurosurgeon thinks you may be a suitable candidate for DBS for OCD, he/she will talk with you about scheduling further appointments that will include appts with psychiatrists, neuropsychologists, and a neuropsychological testing appointment. Your team will then convene and present your DBS consideration case to the hospital committee (or whomever makes the ultimate decision on your candidacy) and they will then either A, deem you an appropriate candidate for the procedure and will proceed with the surgery, or B, they will decide that you aren't a suitable candidate and they will deny you for the surgery/procedure.

As for the rest of the process – I’m still going through it. So once I get the actual procedure I’ll post all the steps that I took/went through with getting the procedure performed. But this how-to is just a brief explanation of how to get the DBS process started – from initial inquiry to determination of candidacy. Right now I have my surgeries scheduled for late January and early February. We're waiting to see if my insurance will cover the cost of the procedure – we won't know 'til a couple weeks before the actual surgery dates, unfortunately... It's frustrating, as I would like to know now... So fingers crossed that my insurance covers the cost of the surgeries!

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