Wednesday, October 20, 2021

Comments by AliciaCondon

Showing 3 of 3 comments.

  • Hi James – I don’t know how to thank you and so appreciative of the time, effort, that went into the research and writing this extremely helpful and professional summary update. Having spent the last 6 months recovering from damaging TMS myself, it is so helpful. (I most recently needed to take a medical leave of absence from work because of the way that the damage impacted me.) I wonder if there are ways to volunteer and be more involved in this TMS community research effort that you have successfully built. for example, I think about ways in which this TMS community can share best practices in health recovery, effect policy and standards (for example, better training for practitioners, patient education). I also wonder about streamlining information for legal challenges/damages for people who have been hurt by TMS practices. On a personal note, I’d like to share something that was extremely helpful and especially with regard to the muscle spasms, and that was high quality Cal/Mag supplement w D, and also magnesium malate. Thank you again for all of this wonderful information. I wish everyone on here the best in their healing & recovery from TMS.

  • Good Afternoon James,
    I want to thank you for your extremely honest, detailed, and thorough description of your experiences with TMS, during and after treatment. I have had a similar experience with painful treatment as well as negative after effects of which were very similar to what you have described. Through sharing of honest information it can be possible to help others who have endured the treatment/effects, as well as help others to make more informed decisions. I hope that you and the others here will fully recover and that we can somehow get the word out to others before they subject themselves to this devastating and ineffective form of “treatment.” We enter treatment after other modalities have been tried for depression, often after decades of suffering. We trust in the skills and competency of those administering the treatment. Briefly….I was in so much pain during my TMS that I actually cried; I can only imagine, based on my reading, that the treatment may have been administered incorrectly by a (new and relatively untrained) supervising doctor. The project coordinator who handled the day to day routines confided to me that my pulse setting was the second highest that he had seen in his time in the TMS center. The supervising doctor had to do the calculations multiple times, as she couldn’t get it right. In the beginning of the treatment and thereafter, I reported the severe pain. Nothing was done. After Week 30/36, I asked if we should even continue, given that my depression scales were actually getting worse as the weeks of treatment progressed. My exact words to the supervising physician were, “I feel as if I have been shaken; I am having trouble remembering things” to name a few. At Week 35/36, I asked the doctor if others had had similar experiences, letting her know that I wasn’t blaming her, but I was in pain and felt shaken. I had hoped to receive some reassurance that I wasn’t alone and that any symptoms were possible but would be temporary. That, I could have lived with. She would not answer the question. I asked the TMS doc for a treatment summary, to be sent to my primary doc; she did not send a summary, but called my PCP – and gave only the name of a psychiatrist. As if the issue with the pain was somehow related to some psychiatric disorder that I was experiencing. At that point, I knew something was really up with the TMS. It may be that the $500 per treatment reimbursed by insurers is an incentive to keep people in the protocol, even when the treatment is painful and not achieving the antidepressant effect. When migraines became more frequent and intense, I consulted a neurologist, who referred me for a neuropsych exam – unknown to us, the neuropsych practitioner was part of the same physician group as the TMS team. The neuropsych lead adamantly explained that there was no evidence that TCS had any negative outcomes; in fact, she had the audacity to tell me that TMS is used to “help migraines and cognition.” I asked her to provide citations and she became visibly flustered and could not provide one, not even the name of a researcher whose body of work focused on TCS outcomes. She would not address my questions, or pain. It was so disheartening to see her attempt to use my depression to explain my symptoms and the blank stare when I pointed out that “The migraines began after the TCS.” All in all, quite similar to the dismissals received by you and some of the other TMS patients who have commented here. Sorry to be cynical but having worked in academic research labs that were federally funded, I saw firsthand the extent to which some behavioral health practitioners will lie (they call it “massaging the data”) to cover up when the results aren’t great. And they’re certainly not above blaming the patient. (During my early career working in an NIH funded research lab, I was turned off from the psychiatric profession, after seeing the manner in which the behavioral health world operated behind the scenes in order to make it difficult for others to be able to understand and hold them accountable for incompetence. I strongly feel that TMS should is dangerous and especially in the wrong hands, should not be allowed to continue. I’m extremely grateful for the willingness of you and the other TMS folks to share information. I’m interested in keeping in touch and should there be class action suits, would willingly testify to what I personally experienced, as well as the manner in which the hospital physician group failed to answer questions or provide any support. Good luck to everyone.