Hey All,
I was just wondering if anybody with Atypical TN has had the Motor Cortex Stimulation surgery and the results of that surgery? How difficult was the surgery itself on your body and how long was the recovery time? How much relief have you have over the short and long term?
For those who have had the surgery and it did not provide any relief, were you able to have the stimulators removed from your head?
I have had a MVD, Gamma Knife, Radiofrequency Rhizotomy, and a Trigeminal Neurectomy, so this is not a first choice surgery for me and have tried many medications with little reilef so am looking at less common surgeries as a kind of "hail mary"!!
Thanks for the input and help, I appreciate it!
Given your history of several surgeries, I would guess that you are presently suffering with what is called "deafferentiation" pain -- a central nervous system response to a break in neural pathways. There isn't a lot in medical literature that evaluates MCS against this category of pain, and what there is seems less than promising. However, here is an abstract from a team led by Kim Burcheil, a member of the Medical Advisory Board of the TN Association:
Motor cortex stimulation for trigeminal neuropathic or deafferentation pain: an institutional case series experience.
Source
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oreg., USA.
Abstract
Background: Trigeminal neuropathy is a rare, devastating condition that can be intractable and resistant to treatment. When medical treatment fails, invasive options are limited. Motor cortex stimulation (MCS) is a relatively recent technique introduced to treat central neuropathic pain. The use of MCS to treat trigeminal neuropathic or deafferentation pain is not widespread and clinical data in the medical literature that demonstrate efficacy are limited. Method: We retrospectively reviewed patients with trigeminal neuropathic or trigeminal deafferentation pain who were treated at the Oregon Health & Science University between 2001 and 2008 by 1 neurosurgeon using MCS. Results: Eight of 11 patients (3 male, 8 female) underwent successful permanent implantation of an MCS system. All 8 patients reported initial satisfactory pain control. Three failed to experience continued pain control (6 months of follow-up). Five continued to experience long-term pain control (mean follow-up, 33 months). Average programming sessions were 2.2/year (all 8 patients) and 1.55/year (5 patients who sustained long-term pain control). Patients with anesthesia dolorosa or trigeminal deafferentation pain who had previously undergone ablative trigeminal procedures responded poorly to MCS. We encountered no perioperative complications. Conclusion: MCS is a safe and potentially effective therapy in certain patients with trigeminal neuropathy.
Copyright © 2011 S. Karger AG, Basel.
Go in Peace and Power,
Red
Here's a somewhat more optimistic abstract, Michaela. Please note that there is an email contact in the abstract. You may want to correspond with these authors, to discuss whether MCS is an appropriate intervention for someone with your medical history and present pain presentation.
Regards, Red
rq Neuropsiquiatr. 2010 Dec;68(6):923-9.
Motor cortex electric stimulation for the treatment of neuropathic pain.
Source
Department of Neurosurgery, Roger Salengro Hospital, University of Lille, France. ■■■■■■■■■■■■■■■■■■■■■■■
Abstract
OBJECTIVE:
Motor cortex stimulation (MCS) is considered to be an effective treatment for chronic neuropathic pain. The aim of the present study was to assess the efficacy of MCS for treating neuropathic pain.
METHOD:
27 patients with chronic neuropathic pain were operated. Electrodes were implanted with the use of an stereotactic frame. Electrophysiological evaluations (motor stimulation and somatosensory evoked potentials) were performed, with guidance by means of three-dimensional reconstruction of magnetic resonance images of the brain. 10 patients (37%) presented central neuropathic pain (post-stroke pain) and 17 others (63%) presented peripheral neuropathic pain (brachial plexus avulsion, phantom limb pain or trigeminal pain).
RESULTS:
In 15 patients (57.7%) the pain relief was 50% or more; while in ten patients (38.5%), more than 60% of the original pain was relieved. No differences were found in relation to central and peripheral neuropathic pain (p=0.90), pain location (p=0.81), presence of motor deficit (p=0.28) and pain duration (p=0.72). No major complications were observed.
CONCLUSION:
MCS was efficient for treating patients presenting chronic central or peripheral neuropathic pain.
Thank you so much for your help and for your time
I appreciate how much work you put into it.
Hopefully I will have more options one day but until then I will continue fighting!
Thank you again,
Michaela