6 replies to this topic

[davebahm]

Hi All,
I tried to reply to my last series of questions but it wouldn't allow me... not sure why.

Okay, I am having serious reservations about doing this surgery. My two main concerns are financial and the commitment to P.T. My employer had to change insurance providers last month due to cost, and we just found out the copay from my screen test a few weeks ago is $400. We can afford it, but that's a lot. Every year our health insurance premium goes up, as well as the copays. If I do this surgery, I can imagine how it will affect the rates next Spring when my employer starts getting quotes. It's a small company and about 50-60 employees participate in the plan. I can't help but think that this will significantly affect the rates for the entire company. If it were just the surgery I wouldn't worry too much, but there's the refills every few months. A friend's son has the pump, and his refills are over $3,000 each time from Children's Hospital, paid for by Medicare (in other words, all of us taxpayers). I asked my neurologist how much the refills would cost if I paid out of pocket (My freelancing is picking up, so there's a chance I could work from home in a few years, thus losing my healthcare coverage). She said nobody had ever asked that before (Of course, why should that surprise me?), but said my cost would be $1,250 per refill, including pump adjustment. If I do this, I'm locked into getting refills every few months and that scares me. What if we want to relocate someday? I've always detested going to the doctor, and this would force me to go regularly. With the way health insurance is going in this country, we may all be in trouble in the future. I'm against the socialized medical plans like in Great Britain and Canada, but something needs to be done to fix ours in the US. Part of the problem is too many people using the system for unnecessary "ailments" and behavior-related health problems (ie, problems resulting from obesity, smoking, alcoholism, etc.). Then there's the drugs. Have a problem? Take a pill! Don't bother taking responsibility for yourself, improving your diet or changing your lifestyle to be healthier!

Secondly, the commitment to physical therapy. For you who have the pump, how many days a week and how long was each session? I know this will vary from person to person. Again, there's the financial cost and what my insurance will allow, but what should I expect for time involved? I work full time, so I wonder if I can commit to long-term physical therapy sessions.

I've really been stressing about this. Any comments or thoughts you have are appreciated. Thanks!

[Lillehammer94]

Hi Dave,

I'm sorry that I can't be much help on the financial aspect of implanting and maintaining the pump because my insurance (Medicaid) pays for my refills. The cost of refill appointments very from doctor to doctor as well. For low income patients Medtronic does offer assistance to cover costs. You mentioned possibly relocating in the future, Medtronic also has a list of neurologists who take care of pumps all across the country.

Physical therapy is the question I can answer better although it is very individual as you said. Basically the time involved and the success rate will depend on what you wish to accomplish and how hard you are willing to work. Some people require only a few months of therapy while it may take a year or two for others. I spent about a year and a half in PT because my muscles were really weak after the implant. I also had several setbacks in finding a theraputic dose level which complicated my treatment and made PT take longer. On average I went to therapy 2-3 days a week for an hour and a half. It was an intense but very important period of time for me to build strength. Now that I'm taking a full courseload in college I can't spend large amounts of time in PT but I feel that the benefits I obtained while in therapy are major reasons as to how I'm handling the physical demands that a college education has placed on me. For myself it was worth it.

Hope this helps,
Gretta

[davebahm]

Hi Gretta,
Thanks for replying. It's kind of a catch 22, because my wife and I make a decent middle-class income, but aren't wealthy. So, we don't qualify as "low income." In fact, I received SSDI at the end of my college years (1990-1991) and a year afterward (while honestly reporting my $7 an hour income as I got my first job out of college). A year after SSDI payments stopped, Social Security contacted me, said they made a mistake and overpaid me over $5,000. So, I've been paying that off ever since, $50, then $30 a month, no interest. My income now is much higher than it was then, plus I'm married and my wife earns more than me. We paid SSI the other day and the balance is $360. We've debated paying the entire balance off many times, but since there's no interest we figure, "Why bother?"

Because of that, I doubt I would qualify for any assistance. However, the copays for my insurance and what I would pay out-of-pocket are still expensive. It's getting to the point where I need to keep my job just so we have health insurance, expensive as it is, at least we're covered!

I definitely would put in the work to do PT after surgery and get my legs going and strong. But with my schedule, I just don't think it's possible right now. Yes, my muscles are tight and things get more difficult to do the older I get. But I realized the other day that I don't have to do this right now. It's not a life-or-death situation, so there's no reason I can't put it off. I'm just spooked with the idea of having an electronic device in my body, locking me into regular doctor visits.

I know, the benefits will probably outweigh the inconvenience and expenses. So I'm still thinking about this.

Thanks for letting me vent,
Dave
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[hfama2006]

Hi,
First let me ask you where you live? Then when you respond, I will give you some info on what you could possibly do.

Have a great day,
T.J.

[davebahm]

Hey T.J.,
I received your message, and thanks for the encouragement. Yep, this is definitely taking adjusting, but I'm doing quite well. The pump has been adjusted four times, from 100 micrograms to 115 to 100 to 108 and now at 118. My wife has been stretching me nearly every evening, and I'm doing basic knee raises and foot tapping (60 per day, each leg). My neurologist insisted I do this because my legs are still very weak in those movements.

I'll make it, I'm just not sure where "it" is!

Dave

Edited by davebahm, 02 September 2006 - 04:30 AM.

[Lillehammer94]

Hi Dave-

Glad you're on the up and up. Just out of cureosity, what kind of foot taping are you doing? I did kinesio taping for a few months during my second year with the pump.

Gretta

[davebahm]

Hi Gretta,
I'm just trying to tap my feet like you would to music, from a sitting position. The leg lifts are getting easier and I can raise my knees a little higher than when I began, but the foot tapping is more difficult.

My lower left back is spasming badly today, and so I'm walking very slowly. Not sure why, but that spot has been painful for the last week or so. Today is the worst, and no matter how I move or shift around while on my feet, it spasms and I have to be careful not to fall over. I wanted to start a new painting today for a show next month (the theme is coffee), but it will have to wait because I prefer to stand while painting.

Oh, Jennifer and I are going to a spasticity clinic on Wednesday, sponsored by the doctor whose care I was under while in the hospital for P.T. last month. She will be there, plus a neurologist, a P.T. and an O.T. Apparently they will access where I am and what further treatment/P.T. is needed. I left a message for my original neurologist's office on Friday and told them I was switching doctors because of their lack of response.

Dave

Edited by davebahm, 10 September 2006 - 11:28 PM.