Monday, December 26, 2022

One month 'til my surgery! 


In exactly one month from now, Jan 26th 2023, I will be having my first DBS surgery procedure performed! (That is if insurance comes through and ends up covering the surgery). I won't know if my insurance will cover the cost of the procedure until 1-1.5 weeks prior to the first surgery. I don't know why this is... But it's just the way it goes – as says my neurosurgeon and team. I am SO hoping they will cover it. I will be so upset if they do not. There is the option of possibly paying out-of-pocket... But the surgery is $120,000 – JUST for the surgery. So obviously it's preferable that insurance cover it. As I do not want to have to dip into my savings to pay for the procedure. But I WILL if I need to! 

Anyways, if I could get your guys' prayers and good thoughts sent my way re/ insurance covering the procedure – I would MUCH appreciate it! 

I'm really excited about this procedure and am hoping to god that it will help alleviate my OCD symptoms and Anxiety and Panic Disorder symptoms. (And depression, also). I've read studies that show that DBS-for-OCD can reduce co-morbid Depression and Anxiety symptoms by up to 40%. If that could be the case for me – that would be HUGE! Any reduction in my Anxiety and Depression is welcome. 

I'm trying not to worry about the insurance component. My neurosurgeon Dr. Ko said that I need to leave it in his and the hospital's/team/s hands – and not worry about it. He said the odds are about 50/50. He said he DID have a good feeling that he could get my insurance to cover it.

It's just hard not constantly jumping to the negative possible outcome and worrying/doubting...

Well... Wish me luck, guys! 



 What are the risks associated with DBS surgery?



In this video, Daryoush Tavanaiepour, MD, professor and chair of UF Health Neurosurgery – Jacksonville, discusses deep brain stimulation and what risks are associated with surgery.

Sunday, December 11, 2022

ClinicalTrials.gov – A Great Resource To Find Current/Active Doctors Looking For DBS-For-OCD Patients For Their Studies!

 https://clinicaltrials.gov

A great resource to find neurosurgeons and doctors who perform DBS is to search for active/current studies on the Clinical Trials (dot-com) Government website!

There are several active DBS-For-OCD studies currently recruiting from various hospitals and doctors ALL across the nation.

Directions: Go to "find a study". Select the "recruiting" option. Write "Obsessive Compulsive Disorder" in the "condition or disease" box. In the the "other terms" box – write "DBS" or "Deep Brain Stimulation".

A New Treatment Option For Those Who Don't Meet DBS Criteria – Transcranial Magnetic Stimulation (TMS) for OCD...



"About 70% of people with OCD will experience at least some benefit from exposure and response prevention (a form of cognitive behavioral therapy), medication, or a combination of the two. These treatments are backed by research studies demonstrating their effectiveness, and have been widely used to treat OCD for over 30 years.
However, for those who don’t benefit from these treatments, or who only experience a minor reduction in symptoms, alternatives have been limited. Over the past decade, Transcranial magnetic stimulation (TMS) has emerged as a new option for OCD treatment, and has progressed from a purely experimental treatment to a more widely available therapy backed by research studies demonstrating its effectiveness. Since TMS does not require surgery and is increasingly available at local clinics in many areas of the US, many people with OCD are curious about this treatment and may be wondering if it is appropriate for them.
What is TMS: TMS is a non-invasive way of “stimulating” (or changing) activity in the brain using magnetic fields. During treatment, patients sit in a chair while a TMS device is pressed against the outside of their head. Inside the device is a wire coil. When an electric current is passed through this coil, it generates a magnetic field. The magnetic field passes through the hair, scalp, muscle, and skull and into the brain, where the magnetic field changes brain activity. This magnetic field can be targeted to reach and stimulate specific areas of the brain, including those involved in OCD. The patient may feel a tapping sensation on their head during treatment, but people receiving TMS are not being “shocked” by electricity. Patients are not sedated during the procedure, discomfort is typically mild, and patients can return to their normal activities immediately."

MORE INFO/READ FURTHER HERE: ↓
https://iocdf.org/about-ocd/ocd-treatment/tms/

SOURCE: “International OCD Foundation | Transcranial Magnetic Stimulation (TMS) for OCD.” International OCD Foundation, https://www.facebook.com/iocdf, https://iocdf.org/about-ocd/ocd-treatment/tms/. Accessed 11 Dec. 2022.

MY PERSONAL EXPERIENCE WITH TMS THERAPY:

I personally have undergone TMS therapy TWO separate times. Both treatments were 6-weeks long. My first treatment was in Jan-March of 2019 with the Brainsway TMS machine. Unfortunately, I saw no positive results with this treatment. 2 years later in the fall of 2021 I underwent a SECOND TMS therapy treatment at a different clinic this time using the Neurostar TMS machine. Again, unfortunately – I received no positive benefit or symptom relief from this second treatment... But don't let my story/experience deter you from trying this procedure! In my opinion it is worth trying if you have severe/bothersome OCD. It is a daily commitment – one 15-30min session per weekday for 6 weeks – depending on the machine used. But there is real life data and studies that shows that TMS for OCD can be effective at lessening OCD patient's symptoms. (Read the article above for more info).




Saturday, December 10, 2022

NEW STUDY!


https://scitechdaily.com/new-study-finds-that-deep-brain-stimulation-is-highly-effective-in-treating-severe-ocd/?fbclid=IwAR30vi4QisHa1MtD15JRabOP4K2j1T7YPWCJ_AZ1FgZ5ypya0C461uwQyKg&mibextid=Zxz2cZ#amp_tf=From%20%251%24s&aoh=16699257458589&csi=0&referrer=https%3A%2F%2Fwww.google.com&ampshare=https%3A%2F%2Fscitechdaily.com%2Fnew-study-finds-that-deep-brain-stimulation-is-highly-effective-in-treating-severe-ocd%2F

New Study alert! Nearly 2/3rds of patients treated w/ DBS for their severe treatment-resistant OCD saw a near 50% reduction in symptoms w/ DBS... This is BIG news in the world of OCD treatment!

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.

WATCH DBS CRITERIA VIDEO HERE: https://youtu.be/8woTpasiByU

  • 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!

IF YOU'RE AN OCD SUFFERER AND ARE PURSUING DBS FOR YOUR OCD – JOIN THIS FACEBOOK GROUP! THERE'S LOTS OF GREAT INFO AND HELPFUL PEOPLE IN THIS GROUP. I HAVE BEEN HELPED GREATLY BY IT – AND SO HAVE OTHERS!
JOIN HERE: https://www.facebook.com/groups/DeepBrainStimulationSupport/?ref=share&mibextid=S66gvF

DBS For OCD – Criteria Patients Must Meet


NEW VIDEO!

"Deep Brain Stimulation For OCD – Criteria Patients Must Meet In Order To Be Considered For Surgery".

Are you looking into pursuing DBS for your severe OCD? In this video I discuss the criteria a patient must meet in order to be considered a candidate for this surgical procedure.

WHAT DOES THE DBS IMPLANT/SURGERY LOOK LIKE?

(SEE ABOVE)

The DBS leads in the brain are connected via a extension wire down the side of the head and neck into the neurostimulator (or pulse generator) which sends electrical signals to the brain via the extension and through the electrode leads in the specific targeted area of the brain.

What is DBS for OCD?

"An important development for treatment-resistant OCD is deep brain stimulation (DBS). DBS has been used since the mid-1980s to treat movement disorders such as severe tremor or Parkinson’s disease. [And more recently, psychiatric conditions such as OCD, Tourette's Syndrome, & Depression]. DBS involves placing electrodes in specific targeted areas of the brain. Once the electrodes are in place they are connected by wires under the skin to pulse generators under the skin (usually just below the collarbone). The pulse generator or “implantable neurostimulator” contains a battery for power and a microchip to regulate the stimulation. The treating physician uses a hand-held wand and small computer to communicate with the pulse generator through the skin. In doing, so the treating physician can determine how much electrical stimulation is delivered in which manner through the stimulating electrodes. These pulse generators are very similar to those implanted under the skin (also usually just below the collarbone) for patients with cardiac pacemakers. The treating physician even uses a similar device to communicate with the pulse generator through the skin. The biggest difference is that in DBS the electrodes are in the brain instead of in the heart (as is the case with cardiac pacemakers)."


Source: https://iocdf.org/expert-opinions/expert-opinion-dbs/

A bit about me...

My name is Mitch. I am 25yrs old and live in Portland, OR. I have SEVERE Obsessive Compulsive Disorder (OCD) –and also co-morbid SEVERE Anxiety & Panic Disorder... and also severe Dermatillomania (aka excoriation disorder/skin picking – which is a co-morbid symptom of OCD). I also have Tourette's Syndrome, Clinical Depression, ADHD, Body Dysmorphic Disorder, BED, chronic insomnia, and dyscalculia – which is a learning disorder similar to dyslexia, but with mathematics instead.

(I'm a mess, I know!)

My OCD is of disabling severity. I've been, for all intents and purposes, disabled now for the past 5 years. My OCD is incredibly debilitating. I have exhausted literally EVERY standard practice treatment modality possible for OCD. In November of this year I was deemed to be a candidate for DBS surgery for my OCD by the DBS committee/board at University of Washington Medical Center.

Today on 12/08/22 I got the call to schedule my DBS surgeries. My DBS surgeries will be taking place in late January and early February of 2023.

For more info on my story dealing with severe OCD – check out my YouTube video where I discuss my journey.

WATCH HERE:



On this blog I plan to document my journey getting DBS surgery for my OCD. I'm hoping that it can be an archival resource for other OCD sufferers with severe OCD who are pursuing DBS for their condition so that they can find helpful information, videos of my surgery journey, and videos of the process of getting DBS for OCD.

If you have any questions feel free to leave comments or contact me directly.

Thanks for stopping by!