Update

I just wanted to give everyone a quick update. I am doing much much better. I have much more energy and the stimulator is definitely helping. I still need pain meds here and there, but overall I know it has made a difference. Mostly I can tell based off of my finance's feedback. He says I almost never complain now (which I find hard to believe) :) but I know that means alot. Again, it is no miracle worker, but I will say that I am happy I did it. I still hope for better programing and am dealing with the scars from the surgery (which I PROMISE I will post soon. Again, I hope this blog has provided some insight, guidance, realism ... or whatever but overall I just pray that someone will benefit from my experiences. :)

Recovery ... Still

So I know it has been forever since I have written.... which kinda defeats my whole purpose of writing this blog. But I have never been so exhausted. I guess it is part of this whole recovery thing. I guess I feel a bit guilty, like I should already be back on track, but I honestly am not. I am still in a decent amount of pain. It is different than my normal pain, more like a soreness that cannot be relieved. I try to put on my game face for my new job, and then try to keep some sort of normalcy at home for my fiance who has been my rock through it all. But all I really want to do is rest.

I had my last Doctors appointment about a week and a half ago and I wish it went better. All my incisions are healing fine, but I am still not getting maximum relief. My rep tried to reprogram me for almost two hours but we still could not get good stimulation on my upper left. It was pretty obvious that she had somewhere else to be and could not work with me any longer. She said that I would just need to keep meeting with her to work on the left side and hopefully we would get better results as time passed. It is disheartening, but I am doing my part. All I know is that in my heart I have put forth my best effort and I will keep trying. Thankfully, no more surgery is needed and I am no longer spasming. I knew when I got into this that it was not a fix all. Just something to help me get by, so I try to keep that in mind.

My scars are much worse now since they had to reopen all but one. I will post pictures this week of what they are looking like now. It is kind of depressing to see the thick red lines that mar my back, but it is part of my struggle, so they are part of me. I am happy to report that I bought my wedding dress. I will not be ashamed of my scars and I will not hide them. They are part of my story ... I only hope that with time I can shed the pain that has brought me so many scars. I have hope and determination that with time it will all fade. I want to thank all of you who have supported me through this rough time in my life. I really appreciate it.

Revision Surgery Update

Hello all. Sorry it has been so long since I have written. I have started a new job and am still recovering so I have been too tired to write. I cannot say yet if the surgery was a success. I need to get some reprogramming done and that won't be until next week. The surgery itself was pretty terrible. I ended up having the left and right leads revised. I went in under some anesthesia, but they ended up having to reposition the leads so many times that they had to keep me awake for the majority of the surgery. They would tell me they were about to go in and I would grip my Saint Jude Reps hand and just brace myself for the pain each time. At one point my Doctor said that he was going to just have to remove everything because they kept getting the motor nerves. At that point I clearly remember saying to him "Please no, this is all the hope I have." At that point he continued to try for four hours until he finally found placement. The surgery was only supposed to last for one hour. In recovery I found out they had to re-open the battery site as well which I was pretty disappointed about. I went in at 9 am and was finally released to go home at 5pm. Thankfully they gave me stronger pain meds. I knew the next day was going to be a battle. Unfortunately even the strong pain meds couldn't match the torture my body had gone through the day before. I felt like I had been severely burned, beaten with a bat, and then dragged by a semi.. but I knew the severe pain would only last a day or two, as it did. I was able to start my job 6 days later and I can say that this surgery was not as debilitating as the last.

Am I happy I did it? Yes, because like I told the Doc, this is my only chance. Wish me the best. I will let you know the results as things progress.

Revision Surgery is Scheduled

So my surgery is scheduled for next Wednesday. They will remove the right lead and replace it so that it is closer to the skin. They may move the left one as well to ensure it does not get pulled deeper by the scar tissue and interfere with my motor nerves on that side. I know it is ridiculous but I almost feel like a failure because I need to have the leads moved. Why couldn't they just work! All I know is I am remembering how much pain I was in before the surgery. My right shoulder is so incredibly painful. I am ready to get back to my life. I am tired of being "disabled." I want to be young and wild and fun and carefree! I hope and pray that this solves my problems and I can benefit from this surgery. And get back to myself!

Wish me luck ... I need it.

The Party Never Ends (if you consider ANOTHER SURGERY a party!)

So I went in to see my SJM rep today because my right lead is still acting up. Ever since I had the lead turned up at my last appointment with my rep's assistant I have been having severe spasms and right shoulder pain. I recently realized that I am not even feeling any stimulation on the right side, only spasms. So I have had it turned down all the way.

Jennifer, my SJM rep, started by turning all the leads completely off. She then proceeded to slowly turn up the right lead and told me to tell her when I first felt the stimulation. Well, I didn't even have to tell her because as soon as she turned it up, my right shoulder shot up in the air into a painful spasm. She then tried at least 30 different times to light up the lead in different ways which all resulted with the same spasm. After that she explained to me that instead of the stimulator affecting my peripheral nerves like it is supposed to, it is reaching my motor nerves instead which create the spasms. She said I likely have not noticed this until now because I had the right lead powered so low until my previous reprogramming. The motor nerves of the muscle are being reached because the lead is placed too deep. This can only be corrected by removing the lead in revision surgery and placing it in a more shallow position.

Yay me. So much for my upcoming wedding dress shopping ... Surgery number 3 here we come.

A Week of Firsts ....... DRUMROLL ...............

So I got the final bill in ..... but I am going to make you read through the whole post to find out how much the final implant surgery costs. Because I am devious that way ;) . Ok now about my week of firsts. For those who don't know I had the final stimulator implanted three weeks ago today. First number 1: This is the first week since the surgery that I have gone to work without my sleepover gear, aka my trusty pillow. First number 2: First week to drive without my pillow.. Bring it on left-hand turns I can take it now! First number 3: It is the first time since the beginning of July that I have had a goo free back. All those bandages put some pretty gnarly goo on you skin that is IMPOSSIBLE to remove without some heavy duty chemicals. There is something about open wounds and nail polish remover or goo-gone that doesn't sound soothing. So it took quite a bit of healing time before I would let any of that near my skin. Granted I still have goo spots directly around the incisions, but for the most part I am clean. First number 4: The driving factor behind the goo removal was my Saturday appearance in a bathing suit. Scars and all I bared it at the pool. (The incisions are healed enough that it is not gross or unclean at this point. The Doctor said I can't submerge in any water until next Saturday but I cheated a bit and got a little wet. First number 5: Possibly one of the most exciting... I wore pants today!! Oh the little things you take for granted everyday. I now realize that I DO NOT have that many comfy skirts or dresses to rotate for three weeks straight. And let me tell you, it is difficult to look like a functioning part of society without pants! So I was excited to look like a business woman again! First number 6: Well I already got wet in the pool, so I took a bath. Oh a glorious bath. Baths are perhaps my most favorite thing in the world (accompanied by a book) so I am a happy woman to have that luxury back.

My next goal .. wear a real bra again. Good lord this sticky bra isn't cutting it anymore. My boobs may be a good two inches lower now! J/k. Too Much Information .. I know. Lol. It may be a long way off though given the placement of my incisions which are still a bit sore to the touch. But hey, with all my wonderful firsts I have had this week, I can take a sticky bra for a bit longer.

Ok, Ok. Now for the final tally. Total charges: $92,251.77. And that's in addition to the $20,000 mentioned in the previous post. Pain sure has its price tag ... let me let that sink in for a bit.

I will post updated pictures of how the scars are healing in the next few days.

Two Week Post Op VIsit

Tomorrow I have my two week post-op visit. I just wanted to share how I am doing and reflect back on the surgery and recovery thus far.

I am still quite tender at the battery implant site. I have been using my pillow less and less for driving and working though. I love all of the comments I get walking into the office .. like, "Hey where's the sleepover at?!" or "Wow, you get to take naps at work?". I usually just ignore them because I don't feel like explaining my recent surgery! I still bring it to work everyday just in case I really need it. I have been noticing more muscle spasms and pain in my upper back now that some of the battery pain has subsided. I have done really well with pain this week. It no longer feels like my skin is ripping apart. It is just tender now. Most of the upper back pain I am dealing with now is related to the right shoulder because the stimulation is not very strong. When I had the trial implant I had difficulty feeling the stimulation in my left shoulder. I thought it was due to placement, but the doctor said it was because my left shoulder was where my worst pain is. I now know this is not the case because it is the opposite now with poor stimulation on the right instead. There is a clear difference in how the stimulation feels in the left versus the right shoulder. Hopefully we can try some new programs tomorrow to see if that changes anything. Otherwise, it would have to be corrected with another surgery. Which honestly wouldn't be that bad. The placement of the leads, anchoring of the leads to the muscle, and external stitches at the lead site caused me minimal to no pain at all in the grand scheme of things. I rarely even noticed the stitches on my upper back. It is only the battery that is bothersome. Perhaps it is better if you have more junk in your trunk for this reason! Lol. I will let you all know how the appointment goes tomorrow.

Surgery Scar Pictures - If you have a weak stomach ... skip this post

Full Shot (8 days after)

Note: The actual lead placement is about 7 inches above the actual incision. On the left, look for the dot at the top of my shoulder. This is where I actually feel the stimulation. It is the same for the upper left lead. I feel the lower left lead approximately where the upper left lead incision is.

Close-up Upper Right Lead (8 days after)



Close-up Upper Left and Lower Left Lead (8 days after)

Lead incisions (8 days after)

Close-up: Lead incisions (8 days after)

Close-up: Battery Impant Site. (8 days after)

The incision is approximately 2.5 inches long where they dug a pocket out to hold the battery.

Battery site (8 days after)

7 Days Post-Op Update; & The Trial Costs How Much?!?!?

7 Days Post-Op Update
So here I am 7 days post-op back at work and trying to normalize my life. I came back to work on Monday. It has been really hard, especially driving. It is very very hard to drive. I cannot move very much to turn my head or make sharp turns with the steering wheel. Not to mention every time I turn I am in excruciating pain where the battery is because the car makes me lean to the side. I drive with a pillow behind my back to minimize the pain. Honestly, I probably should not be driving ... it is pretty dangerous given my limitations. I just take it slow because I have to get to work. Sleeping is getting better. Sometimes I will move wrong and yelp out because of the pulling pain at the battery site. It still feels like a very painful pulling with most movements (more like my skinis ripping apart). I am starting to notice more pain at the lead site since some of the battery pain has subsided. I am feeling pretty bad after yesterday since going back to work has been my first real challenging activity since the surgery. Of course there is NO BENDING, LIFTING, TWISTING, OR REACHING for the next 6 weeks. The restrictions haven't been too bad, but I am sure my Fiance is ready for some more help around the house ;).

I think I am ready to get my programs updated soon because I am having a hard time feeling the stimulation on the upper left and right lead. I am wondering if certain frequencies can more deeply penetrate the muscles. I am still happy that I got the implant. I changed the bandage for the implant site so I saw the wound. It is about 2.5 inches long and it actually looks really nice (weird to say, I know.) It is a very flat, straight line. I was surprised by the appearance because I have seen other peoples incisions that were very jagged looking. I still don't know what it looks like under the three lead site bandages. I don't know if it is a puncture, a long incision, or a small incision. I am very curious so maybe I will talk my Fiance into changing them and taking some pictures to post. (Kinda gross, but I know when I was considering the surgery I wanted to see what I should be prepared for.)

The Trial Costs How Much?!?!?
So last night I checked the mail and found what appeared to be a bill from the hospital. Of course I was immediately panic stricken. I have been around the block before and know from experience that even though they tell you it will be X amount of dollars, they often come back and surprise you with an ungodly amount for some unforeseen reason. So needless to say I ripped the envelope open immediately to see the damage. I have met my out of pocket max for the year so this whole ordeal should cost me nothing. The bill was a summary of charges for the Trial Implant only. Drum roll ...... $20,000.00. Thank god it wasn't really a bill, just a summary of the charges submitted to the insurance company. I was actually pleasantly surprised. The bulk of the charges were attributed to the actual implant, i.e. the leads, the use of the trial stimulator, etc. which is really good. Considering most bills I receive charge insane amounts for the minute details of the whole procedure. So anyways.. I am trying to guesstimate the total charges for the permanent implant. I would imagine it is a great deal more considering I am not "renting" the equipment now, it is mine for good. Also I bet the implanted battery is really, really expensive. So my total guess for the surgery is around $100,000.00. What do you think .... too low or too high? Let's take a poll in the COMMENT'S section. What is your guess? It is just interesting to hear because charges can very a great deal from doctor to doctor for the same surgery.

Post Op : Final Implant

This is going to be a fairly short post which I will add to as I am feeling better. Overall, the surgery went very well. I received more sedation during the final implant surgery than the first half of the trial. This made my surgery experience SOOOOO much better. I really don't remember any of the surgery. I felt fine the day of since I still had the drugs from the hospital in my system. The previous post I had made was from the day after surgery. That was by far the worst day. I have never been in so much pain. Yesterday I started feeling a little bit better. It is not as agonizing to move as it was the first day. Instead of the implant site feeling like a shark bite it now feels like a burning hot poker in my side. Somehow.. that is better. Yesterday I saw the doctor to make sure everything was ok with the battery implant site. I was having pain that could not be managed with pain meds and had some bleeding through the bandage. The physicians assistant re bandaged and said everything looked ok. She also took some x-rays to ensure the leads were properly placed. Thankfully everything looks good. I must apologize to my Saint Jude Medical reps, as after the surgery in my sedation induced haze, I had a breakdown and was convinced the leads were not in the right places. Sorry! Everything seems to be right! It is hard for me to feel the stimulation with all of the swelling and fluids built up, but I really am not focusing on the stimulation at all. Just trying to recover from the post-op pain. So today is day 3 after the surgery and I feel pretty identical to yesterday, which sucks. I have to go to work on Monday and at this rate of progress I am afraid I won't be able to make it. I am still spending at least 16 hours of the day laying in bed propped up on all sorts of pillows. Honestly, you really do need someone there to help you after this surgery. I still can barely get out of bed on my own. There is no way I would have managed without anyone to help me. While my Fiance was at work my Dad would come over to take care of me. So in summary, I am still very very sore. It is difficult to move (mostly sitting to standing or laying to sitting), and I walk very very slowly. I am ready to be well!!!! I know it has only been three days but man it is debilitating. I have posted some pics of the bandaged sites.

The Upper Left Lead , Upper Right Lead, Lower Left Lead, Battery Implant Site. (The black lines drawn from the shoulders to the hip are where the wires go from the leads to the battery site.)

Close-up of Battery Implant Site.