Q&A

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!