Viewing 11 posts - 1 through 11 (of 11 total)
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  • #5510

    kjacks4474
    Participant

    Hello,

    I will be doing my 4th session (i think) today. I have looked EVERYWHERE and can’t seem to find an answer to my question which is……Will not having TMS 5x’s a week hinder results? I ask because my Dr. office is only open Mon-Thur, so I will usually be going 4x’s a week……however, last week Monday was the 4th of July and the technician had an emergency on Tuesday so I only went Wednesday & Thursday (2x’s). The technician also informed me next week she will only be able to do it 3x’s. And in 2 more weeks I am going to be out of town so I will only get 2 days in that week. I asked my Dr. before we began if my going out of town and only getting in 2 one week would matter and if so I could wait until after that to start. He said it would be fine. What I didn’t expect was that the technician would have to cancel on me a few times. Hearing that most people go 5 x’s a week and only off on the weekends concerns me. I do not want to go through 30 sessions and it possible not be effective only because it was administered incorrectly. I have asked the technician if it will have any effect on the process and she said it would not. But when I asked why it is supposed to be done 5 x’s a week she did not know and that is what concerns me. Does anyone know why they suggest 5x’s a week and if that is necessary for a good result? Should I be concerned? Any information or suggestions would be greatly appreciated. I had to fight with my insurance company to get this covered and will do everything in my power to make sure nothing jeopardizes it my results. Please Help!!!!

    #5511

    Hashmael
    Participant

    Hello,
    I cannot answer you definitively, but I have reason to believe that insufficient treatment density will hamper your treatment’s effectiveness.
    I say this primarily because of what I have both read, and personally experienced, with ECT. ECT is both most effective– and most likely to cause memory loss and cognitive deficits– when it is given at very regular intervals (at least 3 times a week).
    I actually discontinued a course of ECT on the third session when the administering psychiatrist finally made it clear that she couldn’t guarantee 3x a week treatments;
    the good news is that, unlike ECT, you aren’t taking on risk of brain damage.

    I can also tell you that the clinic at which I am about to start rTMS, their protocol starts for the first 4-5 weeks at 5 treatments a week;
    so I have every reason to believe that yes, getting treatments less frequently than that will lower your odds of getting an effective treatment response.

    If at all possible, insist that your providers offer the treatment on a very regular schedule.
    If you have other treatment providers in the area, shop around and see if someone can guarantee you more regular treatments.

    One last thing, and this is highly speculative so I’m not actually recommending it:
    I’m buying a Fisher Wallace stimulator, which is a form of sub-seizure electrotherapy that uses AC signals.

    It costs $700, but you may be able to get some reimbursement through insurance. It seems to have a decent response rate, especially for PTSD and insomnia; I’m not sure if it’s as effective as rTMS, but the beauty of the device is that you own the thing, so you aren’t at anybody else’s mercy as to when you can use it.

    I plan on using the unit on weekends or if I drop a treatment; though this is partially because my brain was particularly stubborn. It took me some 12 sessions of ECT, 3 times a week, to get any sort of significant response– and that response petered out within a week; so I’m taking a pretty aggressive approach.
    Like I said, I’m not recommending it– but it’s something to be aware of.

    First and foremost, self-advocate like all hell.
    I’ve dealt with so many negligent, aloof, callous, arrogant mental health workers over the years, and you can’t let somebody else’s complacency stand in between you and effective treatment. Don’t let anybody take advantage of your insecurities on this one.
    Speak up– and if they don’t listen, take matters into your own hands.

    #5512

    Hashmael
    Participant

    P.S. Neuronetics doesn’t exactly want clinicians administering their treatments in an ineffective fashion, either. You should probably report the facility to Neuronetics if they refuse to give you a more consistent treatment schedule, too.

    #5516

    colleencasey
    Participant

    kjacks4474:
    As a patient, not a professional, I have to support Hashmael’s advice about consistency and protocol for TMS Treatments. Do you know what company has provided the TMS Machine in your doctor’s office? I don’t see where you mentioned that, but I may have missed it. Hashmael has a very good suggestion about contacting Neuronetics if it is a NeuroStar TMS Machine. Just go to their website and it will direct you as to how to contact them directly. When I was speaking with a doctor on Long Island, she stated that protocol compliance for patients was critical in determining outcome. That is one doctor’s feedback. Getting direct feedback from the company is important. You deserve the best chance at success with this treatment. Don’t settle for anything less. There are doctors’ offices that unfortunately do not comply when administering treatments and it is unacceptable.
    Advocate for yourself and keep us posted so we can support you.
    Good luck with this.
    Colleen

    #5520

    kjacks4474
    Participant

    Thank you both so much for the responses. I checked a few times and no one had responded and my mom told me today she saw my post and people had answered…..I thought the site would email me if anyone responded. Anyway……I think I have to agree with both of you and speak up. My doctor uses Neurostar so I am going to try and contact them directly. Unfortunately, my doctor is on vacation until next month but I did raise my concern for missing a few sessions the week I would be on vacation prior to him leaving and he said it would be ok. What I don’t think he knows is that his technician cancels almost once a week and when you are only going 4 times a week to begin with I’m not sure how good can be. I have a hard time speaking up for myself so this is difficult for me. I’ve grown to like this technician and don’t want to get her in any trouble. I have also been seeing my doctor for 15 years so I almost feel as if I would be “telling” on him even though he is not even there to see what is going on. I know I need to worry about myself but these are the types of “issues” I deal with on a daily basis. TMS is supposed to help me along with my Dr’s, not stress me out and worry me! I will keep you posted.

    Again, thank you so much for your advice. I truly appreciate it

    #5522

    colleencasey
    Participant

    kjacks4474
    I posted from my iphone a similar response as this but not sure where on this site it ended up. I am going to repost here. The company selling these machines do not have the authority, once the machines are sold, to monitor doctors for treatment protocol compliance. That means it is on us as patients to speak up and insist that we receive responsible treatment protocol during treatment administration. After receiving this info about this issue, I would again suggest you contact the company as per Hashmael’s initial suggestion. This is a medical treatment that needs to be administered accordingly. If cancer treatments were slighted or non-compliant during administration the results could be life threatening. This is no different. It may take deep courage but your quality of life is on the line here. You have support on this site. Keep us posted.

    #5524

    kjacks4474
    Participant

    So I called Neuronetics and was told that they can not tell me if anything under 5 days would hinder results because their studies were only done on 5 days a week for 4-6 weeks. They don’t have studies on anything other than that. They suggested I speak to my doctor and see what his patients results were doing less that 5 days and go off of his studies. My doctor has had very good results with his patients that had TMS so I guess I will just assume I should be ok????? I don’t know what to do at this point. This week will be the first week I will have 4 sessions instead of 3. My first treatment was on June 30th which was also when he did the set up, since then I have had 9 treatments (3 each week) through last week. My insurance has approved a total of 30 treatments so by the end of this week I think I will be 1/2 way through!

    Not sure what if anything I should do next. I’ve spoken to the Neuronetics, my doctor and his assistant. Do I keep searching for another answer because I don’t like the one I received or is 3-4 x’s a week ok and I should just go with it, I’m not a doctor. I feel by the time I find someone that could actually answer my question my sessions will be over anyway……..Ugghhhh

    #5525

    colleencasey
    Participant

    Here is a site from the University of California, San Diego that states Neurostar Treatment Protocol based on the results of their clinical trials. If your doctor is not using this protocol, then you could ask to be supplied with evidence based research that supports the protocol that is being followed to determine your treatments. Its a matter of being an informed patient and there should be no professional problem with you asking.
    https://health.ucsd.edu/specialties/psych/Documents/FAQUCSDTMS.pdf
    Hope this is helpful.

    #5526

    Hashmael
    Participant

    As Colleen has pointed out, your doctor does not appear to be using an evidence-based treatment protocol.
    The doctor’s anecdotal experience in the clinic is not an acceptable substitute for a rigorous scientific study.

    Whoever you were speaking with at Neuronetics either lacks a basic understanding of the scientific method, or is more interested in business than medicine.

    The reason I mentioned contacting Neuronetics is because, in fact, they do not simply supply the machine and leave the transaction at that. The real reason rTMS is so expensive is because Neuronetics also supplies $300 single-use coils.

    Unfortunately my experiences have made me incredibly cynical. I would like to believe Colleen’s suggestion, to simply ask for an evidence-based treatment protocol, would be effective. It’s possible that this approach will work, and it’s absolutely worth trying.
    I have difficulty imagining that it will, and while in theory Neurostar should be financially interested in not doing business with clinics that compromise their product’s effectiveness, and while in theory the insurance company should be financially interested in making sure that the treatments they cover are being dispensed in the most effective manner, I would again be surprised if any customer-facing representative of either company would be capable of seeing it that way.

    But for now, please disregard my morose griping. Follow Colleen’s advice, and ask for an evidence-based protocol.
    You have every right to receive effective treatment, and you shouldn’t feel ashamed or embarassed to ask for it.

    #5529

    colleencasey
    Participant

    Thanks Hashmael for saying directing what I hesitated to be direct about! My hesitation was based on not knowing the temperament of the doctor and patient. I support the info you have shared. Because this is new brain treatment, doctors are experimenting with off label use both functionally and with methodology. Patients are paying for an FDA approved, clinically tested treatment and should receive it accordingly.

    #5954

    ccg5f
    Participant

    My doctor says my missing 3 days in a row is all he is comfortable with (so a weekend plus a day, essentially).

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