TMS


It sounded promising. A new treatment. A drug free treatment.
Recently approved by the FDA.

My psychiatrist handed me a mailer—addressed to her—from a local hospital. The photo showed a patient sitting in what looked like a dentist's chair. The header read: "For patients trapped by depression and its treatment side effects...Introducing the new way back to the true you™"

The true me.

The manufacturer of this 21st century marvel is Neurostar. Catchy.

Transcranial Magnetic Stimulation (TMS). An outpatient procedure that uses short electromagnetic pulses to stimulate the neurotransmitters in the area of the brain that controls moods, emotions and depression. The frontal left area to be more specific. An MRI scan is similar technology as it uses electromagnetic pulses that have a jackhammer-like quality.

TMS is a distant cousin to electroconvulsive therapy.
ECT.
Shock therapy lite.

The typical regiment is five sessions per week over a four to six week period. Each session is a little over half an hour. I skimmed the card she handed me and almost immediately dismissed its premise. I told her I'd consider it on down the road but wanted to look into it further. She admitted not knowing much about it herself but thought it might be a good option and I appreciated anything drug free.

Knowing that treatments like this are inexplicably expensive and also having experienced the hoop-jumping bureaucracy of insurance companies, I set it aside somewhere dreading the process this would entail and didn't even give it another thought. Not until my incident with a prescription drug she first gave me. (See "My sad, stupid Emsam story").

During my recovery from that drug I went back to that card she handed me. I looked up the website and ventured into the world of TMS. I watched YouTube videos, read blogs and newspaper articles both pro and con, etc. There were two facilities sort of nearby that offered this treatment. The mailer was promoting a high profile hospital to the east. The other was a smaller facility to the west. I randomly called the location to the west to get more information and to find out what sort of insurance nightmare I would have to endure to possibly "qualify" for this new treatment. I spoke to a nice lady, possibly a nurse who gleefully sang the praises of this wonderful new treatment. She told me she has gotten lumps in her throat and tears in her eyes from witnessing the amazing results. Of course my deflector shields immediately deploy when I hear such platitudes but at the same time a voice inside says maybe this is what you've been looking for. Maybe this is it. I then called the other facility and left a voicemail. The doctor that actually administers the treatment returned my call a couple of days later. He too told me of excellent results from a large percentage of patients. It made sense. Maybe my brain just needs a good ass-kicking. Maybe this is it.

The next step was to contact my medical insurance company to see if they even knew if this magical chair existed. As expected, I was ping ponged back and forth between departments, associates, supervisors and separate companies "carved out" of the main insurance company. Initially I was told there was no coverage. I continued to call knowing I would get a different person on the other end every time and was finally referred to the proper "carved out" service that was willing to take my "case." I came to find out later that I was the first patient that this insurance company attempted to cover for this newfangled treatment. No pressure. Each treatment was over $300. The initial consultation—over $600. Luckily my copay was $20 though that adds up quickly. Do the math. $20 x 5 days x 4-6 weeks plus the additional monies for gas to get there and back. Still not cheap.

The drive to the hospital was an average of 30-45 minutes depending on traffic. I went for the consultation and the doctor seemed confident that I would be a good candidate. There were several "authorizations" that had to be sorted through that took forever so treatments didn't start until weeks after the consultation. The waiting is the worst. Finally, months after I initiated everything, all the paperwork seemed to be in order and I was given the green light. I was quite surprised.

I'm a private person and don't choose to advertise that I'm clinically miserable to people that know me. Nobody at work knows I see shrinks and take meds though I'm sure they see a sad sack slumped in his chair daily and suspect he needs to be medicated. I put on my poker face every day hoping to disguise my anguish but I've been affectionately referred to as Eeyore at various times in my life so I'm not fooling anyone but myself.

In order to undergo this treatment I have no choice but to work half days for what could be a span of six weeks. Sorry, no nighttime appointments. I sat down with my bosses and concocted some half-truths about needing lots of time off for dental and doctor appointments because of my mishap. Told them my doctor wants me to attend a clinical trial on blood pressure at the hospital that could take weeks. My employers are great and I'm very grateful. They told me to do whatever I needed to do. I'm sorry I couldn't be more forthright with them.

From a handwritten log during treatment:
Day 1:

Pre-treatment apprehension. Irritable. Not thrilled with the impending daily inconvenience. Hopeful for relief soon. The waiting is cruel. During treatment doctor and assistant seem inexperienced with equipment. A bit bothersome. The first session involves customizing machine's settings and measuring my motor reflexes. The chair reclines into various positions for comfort. My head is nestled in a head rest and a strip of paper adhesive is applied around my forehead and affixed to the head rest to keep my head stable. Another cushion of some kind is positioned on the right side of my head for added stability. I'm offered earplugs in case the sound is too loud or disturbing. The chair is backed up to a wheeled console that has a vertical pole extending upward. On the rear of the pole is a pivoting arm that supports a large computer display. At the top is where the magnetic coil resides. The coil is a clamshell shaped apparatus that's applied to the left prefrontal cortex of the head. The supposed culprit area of my malady. Armrests provide added comfort. Some brief testing is done to pinpoint the exact positioning of the coil. I'm given several individual pulses to cause movement in my right thumb. After several tries, it does in fact twitch. All systems are go apparently. Intermittent jackhammering pulses that last around 10 seconds and recur every minute or so. On this first occasion I find the actual treatment itself to be physically uncomfortable, almost painful but bearable. I become headachy and foggy well into the session. The RN assistant seems caring and helpful. The doctor is soft spoken and professional although it's very apparent that this is all relatively new to them. To me too. Post treatment headache continues but dissipates during the drive home. I feel absolutely NO benefit but realize it's way too early to expect any positive change following one treatment but disappointed nonetheless. Headache returns in the evening. Feel restless and low. Hope for possible better results in subsequent treatments. Afraid this won't help.


Day 2:
Less nervous. Determining routine. No doctor this time. Different RN assistant. Very nice, helpful and informative. Procedure is less discomforting and less painful. No headache during or immediately after however a dull headache emerges around 10:00 pm and carries over into the next day. Gets worse as the day goes on.

Day 3:
Falling into routine now. Getting used to the treatment sensation. The original RN that worked with me on the first appointment is talkative and encouraging. No headache following this treatment. The RN tells me that the average time until possible benefits can be as little as two weeks. Two weeks. Seems impossible that decades of darkness can be suddenly illuminated in a two week period. I start to do ridiculous simple math in my head. Let's see......two weeks equals seven more treatments. Can that be? I'm hopeful but guarded. No improvement yet.

Day 4:
Getting comfortable with the routine. The goal is to reach and maintain the highest setting. Trying to be patient with the length of time this is going to take.

Day 5:
More routine. The machine is acting up but there's no interruption. Maxing out at the "120" setting. Hopeful that the maximum strength early on will hasten relief sooner. No benefit yet.

Day 6:
Appointment cut short because of machine malfunction. Irritated and disappointed. Headache from treatment that lasts all night. Just wanted to sleep. Feeling like a guinea pig. Technology is new and staff seem green with the protocol.

Day 7:
Appointment canceled due to machine being down. Becoming disenchanted. Delays drag the treatment time out even further. Wondering if interruptions are setting back any minor benefits back to square one. Depressed and irritable. The waiting game is so cruel. Just need elusive relief. Beginning to not care.

Day 8:
Drove all the way to the clinic only to find the appointment was canceled because machine was still down. Nobody notified me. Each thought the other had informed me. I knew this would happen. I should have called to verify. Felt numb. Disappointed. Angry. Afraid the delays are impeding any possible progress. Not a good day.

Day 9:
Machine fixed. Appointment is lengthy because of reconfiguring. Annoyed but glad it's up and running again. Trying so hard to be patient. The supposed two-week mark is the magic point when people detect positive change. My two-week point has been delayed.

Day 10:
Back to routine. Machine working fine. Back to maximum intensity setting. No benefit. No change. The normally stoic, business as usual receptionist in the lobby suddenly broke form and asked how long my treatment has been. Said she's noticed positive changes in people in two weeks—"big time." Nice to hear but so far not working for me in the least. I was surprised at the interest she seemed to have in me. I would watch her interaction with other patients— or lack thereof and was puzzled. She seemed to have a selective niceness to her.

Day 11:
Routine visit. Maximum intensity. Headache after treatment. Not much to report. Feeling futility. Long, daily trek there getting tiresome and costly. Very depressed and irritable in the evening. It's now the two-week mark. I'm doing yard work on a Sunday and feeling anger. Why have others reported relief at this point but not me? Maybe another week. Maybe not. I'm not sure I care.

Day 12:
Another routine visit. Receptionist asks if I'm feeling better but I shake my head. Maintaining that "120" maximum intensity. No post treatment headache this time. When will the positive results kick in? Several times I ask specifically what patients report who have found relief from TMS. Some say food tastes better. Music sounds better. Some say they feel a lifting of the depression itself. A liberating feeling. I long for all of this but wonder if it's even in my grasp. Only one patient had no success but he missed many appointments and had a bad attitude to begin with. I'm at least here everyday though my attitude is less than positive about this whole game I have to play.

Day 13-24:
Nothing to report. Going through the motions. Appointments are uneventful. It's quite obvious now it's not going to happen.

Day 25:
Sit down with the doctor discussing options. Says I'm a "late responder" but further treatments could still work for me as he's seen it happen with other patients. It's been five weeks now. They will request an additional week's authorization from the insurance company so I can go the full six week span. Today is Thursday. I have two more authorized appointments left unless I can get an additional week. I've gone this far, maybe one last week will do the trick. He also talks of trying different meds and of course he touts shock therapy which he is an advocate of. I take a wait-and-see stance. There are no words for my disillusionment.

Day 26:
It's a Friday. Another typical session. The RN informs me that the insurance company has declined any further treatments due to my lack of response. I have one more appointment on Monday but I've already decided it's over. The RN has disappointment in her eye and in her words. She is however extremely positive and tells me not to give up. Over the course of these treatments this nurse has given me "homework" assignments, recommended books to read and told me of her own battles with depression and the meds she's taken. She really wants me to go back on some sort of med even if it's just a low dose. At times I've felt she's decided she's my doctor and I'm her patient. She gives me one last pep talk and tells me to promise her that I'll show up Monday. I nod but we both know. I ask for a hug and it's done. On my way out I stop by the receptionist's window and thank her for her kind words and support. I can see she's slightly taken aback. That I would take the time to do such a thing. She wishes me luck and hopes I find something. I drive back home in a suspended state of numbness.

TMS has failed me. The realization in the following days causes me to tailspin even further. The irony. Now I'm worse. I may have to return to drugs. Tears every day. My wife tries to understand but is affected too much by my downtrodden behavior. A couple weeks after the final treatment she tells me that I'm not the same person she met 26 years ago and she's resentful. Feels ripped off. We both deserve a relationship that no longer exists. I have no answers for her. I'm at a complete loss for words or thoughts. I cannot control the tears. I want her to hold me. I want to hold her. But that's not how things play out. I tell her I have to go walk. I exit the house into the night and aimlessly wander into a nearby park where I collapse into a heap in the cool grass. I am completely and utterly gripped by pure despair.

5 comments:

  1. Hi 4-Lorn! I just started following your blog tonight and with any particular blog I choose to follow, I have start at the beginning and read upwards. Call it a quirk of mine, but I like the details.

    I watched some documentary months ago that had a small bit in it about this treatment TMS. Well I wouldn't say the clip talked about treatment for depression. It basically just showed how the equipment worked. Making someone move their hand or speak.

    I'm glad you shared this experience because it speaks volumes about how little we truly understand the brain and different factors that lead to depression.

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  2. Thank you for reading my blog and for starting at the beginning. I wish I could arrange the posts in chronological order so it's easier to start with the first post. TMS was a complete failure for me. I don't know why. It sounded so logical. Don't be discouraged by my experience. Others report remission so I'm just part of that "other" percentage that doesn't respond. My best to you.

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  3. I personally don't put myself into the medication spin the bottle routine. I'm not against anyone for taking that route, because whatever works for you--just simply works for you. I won't go through all my reasons for my choices, but I feel ultimately that is my choice to make. I manage, some would probably say not that well, but I still fight.

    I'm actually amazed at all that you manage to accomplish while suffering. It's quite a feat just from the few posts I have read so far. I hope you do find something to give you some relief. Best wishes.

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  4. I just started reading this post and this quote struck me. "She admitted not knowing much about it herself but thought it might be a good option." RUN ... DON'T WALK, but RUN from any doctor who says something like that. How can anyone think something is a good option without knowing much about it? What she was essentially saying was "well, you've tried everything else, why not this?" How can any doctor who supposedly cares or is empathetic suggest a treatment without a fair amount of research or thought, especially with a patient who has a history of being unresponsive? I wonder what she would have thought about getting a lobotomy?

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  5. I am saddened by the loneliness that you must have felt that night. I have not been in a relationship for some time and I'm beginning to wonder if I will ever be in another one. I have dealt with "the demon" for a long time and it's a burden that I have gotten used to carrying. My friends and family care, but the truth is that most people are not equipped to handle such a burden for any real length of time. Unlike cancer, this is an illness that does not end. I constantly refer to it as Chinese water torture. As you know, it wears people down and especially those closest to us (spouses, family, and friends).

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