VNS and Me

April 29, 2009

Deep Brain Stimulation (DBS)

It kind of bothers me that psychology books and websites seem to publish more information on rTMS (transcranial magnetic stimulation) and DBS (deep brain stimulation) than they do about VNS.  VNS is the only one of those treatments that’s been FDA approved — so why aren’t people talking about it more?

I’ve been watching the research on DBS with a lot of interest.  It seemed to me that if stimulating a nerve that went up into the brain (as VNS does) was helpful, then directly stimulating the brain would totally be the bomb!  But I read an article in the American Psychological Association’s magazine, The Monitor, and I feel a little less enthusiastic. 

I thought there had been a lot more research done with DBS — right now a mere 60 people have been treated with it for psychological problems like depression and OCD.  Sixty?!  That’s a ridiculously low number for them to be touting it as the Next Big Thing.

Plus I don’t like the fact that some people seem to have cognitive impairments afterwards.  You can have thinking and memory problems following ECT (electroconvulsive therapy) without having someone drill holes in your skull!  (Is this the acronym post or what? *wink*)

To be useful, these approaches really have to be better than existing approaches.  The problem with rTMS is that the effects don’t last long.  I also don’t get the impression that they’re as powerful as they are with ECT. 

The problem with DBS is they have to drill a hole in your skull in addition to implanting a pacemaker-like device in your chest and running wires up your neck (like they do with VNS).  I don’t want anybody poking around in my brain unless they’re damn sure they know what they’re doing — and that it’s going to work!

I do think it’s an exciting time in psychology.  I keep wondering if eventually some people will be able to move away from medications altogether and we’ll be able to repair malfunctioning parts of the brain with implants like these.  I’m still excited about my VNS, and I think it’s cool to be on the cutting edge of modern science.  I think it’s even more exciting that they’re just continuing to do research on VNS, and they’re learning more and more about ways to help people with depression with it.

I am extremely hopeful that I will see even more improvements over the next six to eight months with my VNS!

April Update

Filed under: implant,living life,scars,surgery — vnsandme @ 12:32 am
Tags: , , , ,

Well, it’s April, and at the end of June I’ll have had my implant for a year.  The psychiatrist who handles my VNS adjustments keeps telling me that many people see the most noticeable improvements between a year and a year and a half.

I started seeing a difference within a few weeks; now the thing I’m most aware of is that when I get down I don’t feel the need to sleep for 20 hours at a time.  (Seriously.  When I get depressed, I can just SLEEP.)  Though a few times that’s bummed me out, because sleep is an escape for me, overall I’ve been able to stay more active in things I like doing, rather than just becoming kind of comatose.

I need to post new pictures of my scars.  The one on my neck is really hard to see at this point; some days I don’t even bother to cover it with makeup, because you’d never notice it anyhow.  The one on my chest is still pink, but it’s flattened out and I can see that it’s going to start turning white soon.  I can’t tell you how much I appreciate that the doctor who did the surgery did a vertical cut that disappears behind a bra strap.  And it doesn’t bother me even if it does peek out from time to time if I’m wearing a bathing suit or something. 

I’ve really enjoyed reading comments and questions from other people who are considering the implant, or who have gotten one themselves.  I’m curious about what other people’s experiences have been?  If I’m able to collect a few stories, I can post them in a new blog entry.

January 8, 2009

Status Update

Filed under: depression,living life — vnsandme @ 2:20 am
Several things happened to contribute to my worsening depression in October. 
tx_lightbox1

This picture isn't of me, I found it online. But the lightbox looks just like mine.

First, I always struggle when the days get shorter.  I actually use a clinical lightbox and I really recommend one to anyone who feels worse during the winter.  Mine is from Alaska Northern Lights.  They’re expensive — about $250, but it makes a huge difference in the quality of my life.  Without it, I can literally sleep 18-20 hours a day, and I feel drugged when I’m awake; with it, I sleep a normal 8 hours without needing naps.  I carry it back and forth with me to work, and sit in front of it at work for several hours a day.  People jokingly call it my Happy Light.  Everyone wants to know if it really works.  A few people have gotten their own after seeing what a difference it makes for me, especially when I use it regularly, like I’m supposed to. 

Second, there was a lot of upheaval in my family of origin.  My little brother got married, and I felt really inadequate for still being single.  My parents are getting a divorce, and things have been very strained (you can just imagine what the wedding was like, though everyone was pretty civil). 

Third, I’ve been dealing with some dissatisfaction about my own life.  I’m in a job I really enjoy, but I don’t make the money I believed I would when I was younger.  I also know that if I were to go into a different profession I could make a lot more.  It also frustrates me that I have trouble meeting people I’m interested in dating — that also partly has to do with the nature of my work; I don’t meet many people (ok, any people) who are potential dating partners.  I’ve been single for a long time now, and I’m finally tired of it.

Fourth, my meds needed adjusted.  Going up on the Effexor helped a lot, though it does make my hands shake, which I don’t like.  (I can live with it, though.  Anything to feel better…)  I don’t know that the Prozac has done much to help, and since I’m still dragging a bit some days, I might ask if we can go up a little bit on the Abilify.  I don’t know, I’m honestly a little leery of making a lot of changes to my meds during the winter months, because in the spring they just end up needing to be adjusted again with the longer days and better weather.  I seriously just need to move to Florida or SoCal and be done with it. 

I did go back into therapy to deal with the situational things — the parents’ divorce, the feeling bad about my inadequate dating life.  I have also worked hard to pursue interests and not let them fall by the wayside on the days I don’t feel like doing a lot.

Exercise is still a bit of a struggle for me, but I think that’s because I’m out of shape, and when you’re out of shape, your body doesn’t want to exercise.  When you’re in shape, it wants to go to the gym (or for a walk, or whatever).  Your brain may not want you to go, but your body does. :-)  I started to get back into the routine in December, but then the holidays hit and there was a lot going on.  I’ve been sick the last few days (the weather has been all over the place, and I’ve had migraines), but I’m planning to get back into the gym when I get past that and struggle through until I’m back in shape and actually want to work out.

There are also things I do that make me feel better because they make me forget about my depression, even if it’s just for a little while.  For example, I really enjoy taking photographs, and finding good shots keeps my brain too busy to feel bad.  I also got this bee in my bonnet that I was going to learn to sew (which would really crack you up if you knew me — I’m not really very domestic) and I find doing that soothing.

So overall, I’m doing really well for the time of the year it is, especially compared to last year.  I do believe the VNS is a big part of that.  I talked some more to my VNS doctor (I have 3 psychological professionals — my therapist, my psychiatrist — who does my meds, and my VNS doctor — who’s technically a psychiatrist too), and she said that usually as people improve, it’s in steps. 

So maybe their concentration improves a bit, and then their energy levels.  Maybe they don’t need quite as much sleep, or they’re more interested in things.  But the subjective feeling of unhappiness vs. happiness is what changes last, usually.  She said it’s not uncommon for people to say “Yeah, I think it’s helping, but I want more.”  And she can see the improvements, but they don’t feel great, so they feel like it’s not working very well.  She said that somewhere around a year and a half, a lot of people reach the point where their subjective mood finally feels better, too.  Since I’m only at about six months, and I’m doing pretty well overall, I figure it’s gotta be uphill from here.

My scars are looking really good.  I don’t even bother to cover the one on my neck on days I don’t work; another month or so and I may not even need to bother then.  I keep thinking I need to take another picture to post here.

Q&A

Filed under: Uncategorized — vnsandme @ 1:48 am

Now that I’m back on the horse with the blog, so to speak, I want to address the questions people have asked.  Please remember that I’m not a medical doctor, I’m just a patient who had this done and has been really nosy about trying to understand how it all works.

I got a VNS on Oct. 6th and everything seemed to go really well. However, two days ago, I started having really bad stabbing pains where the actual VNS is. It isn’t continuous pain, but it does feel like it is becoming more frequent. Do you know if that is a common side effect? It doesn’t seem like I have an infection (I don’t have a fever, but have been really nauseated.)

I have read through all the research literature, and no, it isn’t a common side effect, especially if it’s intermittant.

A few days after I first had my VNS implanted, I developed this awful pain in my neck.  I hate calling the doctor and complaining, but I was in tears, so I finally broke down and called.  The doctor asked several times if the pain was intermittant or constant.  For me, the pain was constant, and we figured out that the way they’d positioned my head during surgery caused a muscle in my neck to spasm.  (“Take some aspirin,” they said.  Clearly they had never had a muscle spasm in their necks.  I had some Percoset left from the surgery.  I took that instead.)

The reason they asked me if I had intermittant pain was that they were concerned the unit had turned itself on and was generating a current that I wasn’t ready for (they work you up very slowly).  So if someone with a VNS implant begins to have intermittant pain anywhere along where the unit or the wires lie, I’d definitely contact my doctor right away.  It’s possible the unit has been turned up too high by mistake, and it’s also possible that there’s been some kind of malfunction.  The good news is that the doctor who deals with your VNS implant can turn it off and make the pain stop, or adjust the settings to make it more comfortable.

How much did the procedure cost?

The procedure and the implant typically cost somewhere around $36,000 if you have it done in a hospital.  (Wait, don’t give up yet.)  I am extremely fortunate to be young and in good physical health, so Cyberonics (the company that makes the VNS unit) arranged for me to have the surgery done at a local outpatient surgery center.  They also worked with the surgeon and the center to get me the best price possible.  By the time all was said and done, the procedure cost less than $23,000.  (I know, still a helluva lotta money, but also a helluva lot better than $36,000.)

Here’s the breakdown:

  • The actual VNS unit + the use of the surgery center : $20,585 (approximately $20,000 of that is the cost of the actual unit)
  • Anesthesiologist: $672
  • Surgeon’s Fee: $1400
  • Grand Total: $22,657.00

I was very fortunate to have parents who make (or made, before the economy hurt everyone so much) enough money to help me get this done at that cost.

One unexpected fee that I should also mention is the doctor visits to have your VNS unit adjusted.  Usually you see a psychiatrist or a neurologist, and mine bills insurance at $540.00 for each visit.  Not realizing that I was paying out of pocket, she billed me the same thing.  Fortunately, I realized that that was probably the insurance fee and not the out-of-pocket fee, so I talked to her and now I pay $200 out of pocket per visit.  (Fortunately, I don’t see her very often.)  Yes, $200 is a painful amount of money per visit, but if you’re considering having this done or have had this done you’re probably like me — ready to try anything, at any cost, just to feel better and be able to live your life.

Have you ever undergone Electroconvulsive therapy?

No.  Last winter I had the worst episode of depression I’ve ever had, or at least the worst I’d had in years.  (And I struggle a LOT anyhow.)  It was literally too much effort for me to get out of bed, too much effort to eat.  I was in Big Trouble, and the Bad Thoughts (suicidal thoughts) were just eating at me nonstop.

My psychiatrist is absolutely wonderful, and she tries things with me based on the very latest research, partly because the old methods don’t work with me, and partly because I’m very open and honest with how I’m feeling and reacting.  I also am very careful not to put myself in a situation where I’ll actually hurt myself.  I have a friend or relative come and sit with me if I feel I’m in danger, and there have been times when, for example, I’ve had to have sharp objects removed from my home.

Anyhow, I’d always been against ECT because I thought it was like in the movies, where you shake and are awake and…well, that was something I wasn’t ever going to do.  Then two things happened.  First, I learned that ECT is not like that.  During ECT, you are given a muscle relaxant and a sedative, so you’re asleep during the treatment.  Because of the muscle relaxant, you don’t shake; they monitor your brain activity on a monitor.  Second, I was desperate.  Really, really desperate, and I didn’t care what they had to do to me, I wanted it done.

When I told my doctor, she told me she really didn’t want to do ECT on me because I have advanced education and I need that education to do my job.  If I lose any of that advanced education, I lose my job and my ability to support myself.  Well, it’s not uncommon for people to have some memory loss from ECT, some if it permanent.  (And even if it only lasted a few months, that’s enough to cause a lot of trouble in my life, you know?)  So that’s when she brought up the VNS.

A couple of people also asked how I have been doing, so I’m going to add one more post with an update, and then try to be better about keeping the blog up-to-date.  Thank you to everyone who’s read through, and especially to everyone who’s commented!

Embarrassing Admission

Filed under: Uncategorized — vnsandme @ 1:22 am

Well, this is just embarrassing to admit, especially since I fancy myself a computer person, but I didn’t realize I had comments!  I have checked several times, but didn’t notice the comment moderation had withheld all of the comments.  (I’m used to Blogger.  This is my first WordPress account, and while I like all of the do-dads we don’t have in Blogger, it also means I’m still figuring things out.)  So — the good news is, now that I know how this works (really — duh me — I’m still shaking my head) I’m going to be better about responding to comments.  Please, please forgive my abysmal lapse there.

October 1, 2008

Got Questions?

Filed under: general information,how it works — vnsandme @ 1:07 am

I know some people are coming by to learn more about the procedure because they’re considering having it done or recently had it done.  I had it done for depression, so I can speak to that better than for epilepsy, but if the curiosity is about the scars or what it feels like when it goes off or whatever, I can talk more about that.  Point is, feel free to ask questions in the comments section if you don’t find what you’re looking for!

Picture of Leads

Filed under: implant — vnsandme @ 1:06 am
Tags: , , ,

Here’s another picture.  In this one you can see my leads (the wires in my neck).  Just to reassure you, the reason you can see them is because of the way I was holding my head, kind of arching it back and pushing my shoulders forward.  But I thought you might like to see.

you can't normally see them

Left: leads go over collarbone into neck (looks like a circle) Right: how things normally look

September 29, 2008

Scars at 3 Months

Filed under: depression,implant,living life,scars,surgery — vnsandme @ 11:36 pm
Tags: , ,
implantation scars at 3 months

implantation scars at 3 months

Well, it’s been a little over 3 months since I got the VNS implant. I took a picture so you can see the scars. The one on my neck is increasingly hard to see — soon I won’t need any makeup to cover it.

The one on my chest is a lot easier to see, and raised.  It doesn’t bother me at all, though (well, other than itching from time to time) and it disappears right under even a thin bra strap since it’s vertical.

(If you’re reading this because you’re considering having this done and you’re worried about scarring, totally ask your doctor if s/he’ll do it this way.  It’s the best way to go!)

To the left of the scar (your left), you can see what might look like a bruise on my skin but is actually the curve of the implant.  I’m fairly thin compared to most people (but definitely not skinny) and they do tell you ahead of time that people with small frames and who are thin may be able to see a bit of the outline of the implant.  This doesn’t bother me at all.

Last of all, the picture is (probably obviously) life-size, so you can see how big the scars really are.

In terms of me being back on the downward spiral, I figured out that it seems to be psychological.  Major family upheaval, so I’m going to go back and see my therapist to talk about it.  I really believe that will help, but I’ll be sure to let you know for sure!

September 20, 2008

Relapse & Frustration

Filed under: depression,living life — vnsandme @ 12:41 am
Tags:

Well, I’ve fallen back into the hole.  Between some family upheaval and hormones, I went down and just can’t seem to pull myself back up.  I really, genuinely don’t think what I was getting before was a placebo effect, but I am frustrated by how down I am.

I went to see my psychiatrist, and she adjusted my meds, so now I am at 300mg Effexor, and we’re going to add 10mg of Prozac and remove the Lexapro.  Eventually we’ll go up to 20mg of Prozac.

I have noticed it is much harder to exercise since I got the implant.  I feel winded much more easily.  Not just when the stimulation is on, either; across the board.  That’s also frustrating.

Supposed to see the dr who manages the VNS next week (moved from this week due to conflicts on her end).  I definitely want to go up some more, and my psychiatrist agreed.  So hopefully 1.25 will help me feel better again…

August 25, 2008

Bored = Better?!

Filed under: living life — vnsandme @ 2:23 am

I’m doing really well on this thing.  There’s enough of a difference that I think it’s downright criminal that insurance companies are refusing to pay for the surgery for depression.  For someone like me, for whom treatment as usual (ie medications and therapy) weren’t providing much in the way of improvements anymore, it’s life changing.

I know I said before that I was bored, and I am.  But I’m realizing more and more how profoundly that means that I’m doing better.  Before I was using so much energy just to function like a semi-normal human being.  Everything was a chore, and I dreaded anytime something was required of me.  Just pretending to be normal was using up at least half of my energy. And I’ve been doing it for so long I didn’t even realize just how much energy it was requiring.

An example.  I’m driving a 10-year-old car that isn’t “me.”  I’ve been thinking for about three years that I need to get into a new car, but it’s been overwhelming to think about dealing with car salesmen.  So it was a chore I was going to have to do…eventually.

Well, now I’m going to go drive some of the cars I’m interested in just to do it.  (I’ll let you know how it goes.)

I’m also noticing that I’m more interested in having music playing while I’m doing things.  Usually I find it distracting, but now I’m finding that I’m enjoying it in the background while I’m working on other things.  (See?  I have lots of brain energy freed up.  I can even sing along.)  I’ve been totally enjoying Disturbed’s new album, Indestructible.  I’m sure my neighbors are ready for me to stop enjoying it and listen to something else…anytime now…

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