I wanted to share my OCD miracle, which I have kept private until the past couple of weeks. I have had severe OCD since 2001, months after my mother died of cancer and right after 9/11.
I saw OCD therapists and did ERP for 23 years, along with trying almost every medication for OCD. Starting in 2021, my OCD became severely crippling. I went to three residential treatment programs for many months between 2021 and 2023, tried Ketamine therapy many times, did TMS many times, among other treatments.
My father listened to an iOCDF webinar that covered brain procedures for OCD in 2022 and after some research, I connected with the OCD team at Butler Hospital in Providence, Rhode Island, which is affiliated with Brown University. After multiple visits to Providence and many interviews, and after extensive coordination between my OCD therapists, my psychiatrist and the Brown team, I was scheduled for an anterior capsultonomy (using Laser interstitial thermal therapy (LITT)) in late 2023 with a renowned neurosurgeon in Providence affiliated with Brown.
The weeks before my surgery were my lowest points with OCD. Many days I was doing compulsions (mental and otherwise) for over 10 hours per day. I was a partner at a large international law firm and was not able to work and took several medical leaves post 2021.
The surgery felt like my last hope. Because no treatments had worked to date, and because my OCD was so severe, I figured I would fall in the 30% of patients who do not significantly improve post surgery. Miraculously, I have not had an OCD episode or spent time doing compulsions since my surgery in 2023. My OCD went from a 9 or 10 to almost a 0. The surgery cured me, and I did believe OCD could be cured. I believe only two institutions in the US (U of Chicago and Brown/Butler) do the surgery in this manner (it is not DBS).
I am passionate about helping people with OCD and I hope to assist in making this procedure more accessible. While brain surgery sounds incredibly scary and intense, my nose job (not cosmetic) when I was 15 was much more difficult. While I was in Providence for many meetings and tests for a week before the surgery, I was home the next night after staying at the hospital overnight. I felt no pain at any point and there were just small cuts on my head that healed in weeks. I had no side effects other than fatigue and apathy for a couple of months (for example, I slept until 2 PM many days).
It was an absolute miracle. I read many posts in this group about brain surgery for OCD and it is very misunderstood. While this post is anonymous (just worried about employers, etc, given the stigma around mental health and this surgery), it would be my pleasure to speak to anyone who has any questions. I can also introduce you to my treatment team.
OCD ruined my life for decades and I am so sorry you are all dealing with it. I am here for you. Thank you for reading!
Written by
Puckto8
To view profiles and participate in discussions please or .
I am glad you found something that works for you. This type of treatment is a last resort treatment. There are other things to try first and it sounds like you did. Most people don’t have treatment resistant OCD but there are some who do. If a front-line treatment doesn’t work then it’s time to look at why it didn’t. There can be many reasons why.
I understand not wanting your employer to find out about the OCD or the surgery.
Thank you for sharing your story. I'm glad you're feeling better in regard to OCD. However, there may a risk for some OCD sufferers who read this story. They may tell themselves, why bother to do ERP, which isn't always an easy therapy, if destroying few brain cells seemingly responsible for my OCD will solve my problem effortlessly?
As Natureloverpeace says, this type of treatment is a last resort treatment. I was wondering why and I did some google search. I read that the response rates range from 47% to 79%, with 11%–24% of patients experiencing remission. Luckily, it looks like you fell in that last category, which is great, but not everybody may be as lucky.
I also read that the procedure is generally safe, but adverse effects include personal changes, cognitive deficits, weight gain, and seizure onset. Fortunately, you experienced only minor side effects.
On the other hand, about 50–60% of patients who complete ERP treatment show clinically significant improvement in OCD symptoms and treatment gains have shown to be maintained long-term. However, I understand why, when everything else has failed and OCD has become debilitating, one would turn to the brain surgery option.
The process at Butler is very robust and past ERP sessions are required in order to be eligible for the surgery, among other treatments and medications. It is a last resort procedure for now, but hopefully increased access and awareness will change that. Only two institutions do the procedure in this manner, and my understanding is 70 percent of patients have significant improvement post surgery.
If I understand correctly, you hope that brain surgery won't be a last resort procedure anymore for OCD, but will become more common. By sharing your story, you probably hope that more people will inquire about it, which will increase the number of surgeries performed and offered, the size of the 70% of patients who improve, and the prominence of the procedure.
Your intentions are laudable and I understand your enthusiasm because anterior capsultonomy saved you from despair, but history shows we need to be careful with brain surgery used to treat a mental disorder. Nobody now believes in the effectiveness of lobotomies (that were considered a breakthrough in the forties and fifties to treat schizophrenia and bipolar disorder). Deep brain stimulation (DBS) is at least reversible, whereas brain lesions created by a laser are permanent and irreversible.
My personal wish is that science moves slowly in that domain.
I don't think it is fair to compare LITT to a lobotomy. A lobotomy is illegal and no longer used by doctors. The LITT surgery does not involve lobotomy techniques such as metal instruments to cut the brain.
What I meant to say is that we need to be careful with brain surgery used to treat a mental disorder. Lobotomies were just an example of such brain surgery about which science change its mind after few decades promoting it.
The rates you read about for clinically significant improvement and recovery from OCD vary. The 50-60 % rate is shockingly low but it’s low because it includes the people who received ERP treatment by someone who isn’t specifically and appropriately trained to treat OCD and people who may not have received care at the appropriate level. Most therapists who claim they can treat OCD haven’t received this training as it’s not usually offered in graduate school. The rate also includes people who sought care from an OCD coach who is someone who claims they can help with someone’s OCD. They are a person with OCD but they usually aren’t a licensed therapist and they don’t have training to treat OCD.
Thank you very much for sharing recovery experience. It’s always great to hear success stories. I have been struggling with OCD since I was 12 y/o, I’m now 34. I have always understood that there is no cure for OCD, so just the thought of being cured of OCD is heavenly. I would really like to hear more about how exactly the surgery works. Please.
Hello Puckto8. I’m beyond thrilled about your recovery. I don’t know you but still knowing that someone who has suffered so tremendously is now okay.
I want to address something like a pattern I’ve noticed in the OCD community on this platform. I feel like every time someone shares a great recovery via a non conventional method, he/she experiences a negative reaction from the people on this website. I don’t know why and where this resistance comes from. I personally am so happy for you. Regardless of what the method was, the final result speaks for itself- you are OCD free now. For me it takes an SSRI, an antiseptic and a little hemp to live OCD free.
The negative reaction is exactly why I am posting. Hoping for change! Trust me, brain surgery sounded crazy to me at first. But it saved my life. And no pain, was home the next day. Etc. and it is not a clinical trial. It is an approved procedure by a neurosurgeon.
Thank you so much for sharing! This is truly wonderful to hear. Your experience gives people a lot of hope, especially when all other options have been used and exhausted. There are many advances in medicine and surgery and it is important for people suffering from OCD to gain awareness about them.I do not think people here who read or will be reading your post are going to quick ERP or medication and immediately schedule a brain surgery. However, for people who have tried therapy and medication for many years nothing helped them improve, this is life changing.
I feel blessed that medication helped me significantly reduce my OCD and I am living a much better life now. ERP was helpful at reducing my anxiety over time and therefore how I reacted to my trigger, but the thoughts were always playing in my mind all day.
Now if nothing worked, I would have gone to Providence (which happens to be my hometown) and met with your neurosurgeon!
Thanks again for sharing and I am glad to hear about your recovery story.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Laundry OCD
I’m New Here - My Story
