Deep Brain Stimulation (DBS) Surgery with Callum deQuevedo
01/16/24 • 34 min
In this episode, I have an illuminating discussion with Callum deQuevedo about his life-changing experience undergoing deep brain stimulation (DBS) surgery to treat his severe Tourette Syndrome (TS). Callum shares the incredible story of his journey to DBS, from exhausting medications and therapy options, to making the decision for surgery, going through the procedure and recovery, to the transformative impact it has had on reducing his tics and self-injurious behaviors. While not a cure, DBS has given Callum a new lease on life. This powerful testimony sheds light on an emerging treatment option that could help others find relief.
Episode Highlights:
[01:27] Callum emphasizes DBS is not a cure but has significantly reduced his tics.
[02:37] Callum details the lengthy DBS candidacy process.
[05:30] Mental health criteria for getting DBS.
[07:06] The process of DBS surgery.
[09:27] Remote monitoring of Callum's DBS device.
[10:58] Follow-up surgeries required.
[12:38] DBS reduced Callum’s motor tics by 70%.
[14:15] How DBS has lessened the burden of TS.
[15:30] DBS has saved money caused from severe tic episodes.
[16:25] How Callum enjoys going to the movies.
[18:10] Being triggered by each other’s tics.
[19:30] DBS has improved Callum's hand tremors and handwriting.
[20:23] Mental health benefits of DBS.
[21:33] Limitations after DBS, including high-contact sports and metal detectors.
[23:54] Callum’s future college and career plans.
[25:04] Impressed by Callum's deep knowledge of tic blockers.
[28:54] Finding a TS therapist.
[30:00] Callum’s one piece of advice for people with TS.
[31:40] Post-DBS, Callum needs less accommodation at school now.
Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others.
In this episode, I have an illuminating discussion with Callum deQuevedo about his life-changing experience undergoing deep brain stimulation (DBS) surgery to treat his severe Tourette Syndrome (TS). Callum shares the incredible story of his journey to DBS, from exhausting medications and therapy options, to making the decision for surgery, going through the procedure and recovery, to the transformative impact it has had on reducing his tics and self-injurious behaviors. While not a cure, DBS has given Callum a new lease on life. This powerful testimony sheds light on an emerging treatment option that could help others find relief.
Episode Highlights:
[01:27] Callum emphasizes DBS is not a cure but has significantly reduced his tics.
[02:37] Callum details the lengthy DBS candidacy process.
[05:30] Mental health criteria for getting DBS.
[07:06] The process of DBS surgery.
[09:27] Remote monitoring of Callum's DBS device.
[10:58] Follow-up surgeries required.
[12:38] DBS reduced Callum’s motor tics by 70%.
[14:15] How DBS has lessened the burden of TS.
[15:30] DBS has saved money caused from severe tic episodes.
[16:25] How Callum enjoys going to the movies.
[18:10] Being triggered by each other’s tics.
[19:30] DBS has improved Callum's hand tremors and handwriting.
[20:23] Mental health benefits of DBS.
[21:33] Limitations after DBS, including high-contact sports and metal detectors.
[23:54] Callum’s future college and career plans.
[25:04] Impressed by Callum's deep knowledge of tic blockers.
[28:54] Finding a TS therapist.
[30:00] Callum’s one piece of advice for people with TS.
[31:40] Post-DBS, Callum needs less accommodation at school now.
Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others.
Previous Episode
Intersectional Identity
I had an enlightening discussion with Mason, a fellow advocate in the Tourette's community, about the complex intersectionality between TS and other identities. We explored the stigma surrounding coprolalia, the financial barriers to Tourette’s advocacy, and the dangers of gatekeeping Tourette’s diagnoses. Our conversation shed light on the diversity within the TS experience.
Episode Highlights:
[02:22] Kicking people with coprolalia out of the Tourette's community.
[04:16] The camp video that emphasized Tourette’s is not about swearing.
[06:12] Navigating intersectional identities beyond just having Tourette’s.
[07:39] The heavy financial burden of Tourette’s advocacy.
[10:08] Unpaid labor expected in disability advocacy communities.
[12:53] Respecting gender diversity at Tourette’s summer camps.
[14:31] The problem with accusing people of “faking” their tics.
[15:56] Tourette’s manifestations viewed differently across gender.
[17:53] Pretty privilege when it comes to tics being seen as “cute”.
[19:32] Who is really behind the Tourette’s police?
[21:01] Supporting conflicting access needs in the TS community.
[22:50] Barriers to medical transition for trans people with disabilities.
[25:00] Mason’s experience when coprolalia tics first emerged.
[31:32] The importance of visible TS role models across the spectrum.
Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptic' with others.
Next Episode
Empathy in Action: Navigating Nursing with Tourette's - Jillian's Journey
In this episode, I interviewed another TS advocate, Jillian Firenze. Jillian has been a coach and a nurse at the annual NJCTS Tim Howard Leadership Academy. In this episode, we discuss her childhood growing up with TS (and having siblings who also have TS), her work as a nurse, what inspired / motivated her to become a nurse, what tic attacks are and how to handle them, and general insights on supporting youth with TS.
Episode Highlights:
[00:45] Finding her calling in nursing after caring for sick family members.
[05:09] Supporting her younger brother who was also diagnosed with TS.
[08:38] Struggling to accept tics until having a breakthrough at the Academy.
[10:32] Describing intense tic attacks and compassionate ways to respond.
[15:31] Finding moments of self-care while coaching high-demand roles.
[19:38] The tricky balance between supporting and triggering someone's tics.
[22:43] Battling recurrent depression alongside TS in adulthood.
[25:08] Uplifting others to embrace their true selves and never give up hope.
Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/
Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others.
The UpTic - Deep Brain Stimulation (DBS) Surgery with Callum deQuevedo
Transcript
But the one I got for specific purposes, you can actually get like a rechargeable one and many different types. But I got like, where I have to get this replaced every three to five years. But the reason that's really good is because instead of having the recording saved from my brain, so that's the other thing. This device measures my brain activity. This is always recording my brain. And so stuff can be uploaded to a cloud with the recha
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