About Me

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I am a 24 year old woman who has been battling chronic back and neck pain for the past six years. I am writing this blog to help others and to educate others about Peripheral Nerve Field Stimulation (PNFS) which is a new application for Neuromodulation technology that treats pain. My trial PNFS implant is scheduled for Monday, July 6th, 2009 and the final surgery is scheduled for Tuesday, July 21st, 2009. I will be documenting my journey through the process. _____________________________________

Wednesday, July 29, 2009

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)

Tuesday, July 28, 2009

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.

Friday, July 24, 2009

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.

Wednesday, July 22, 2009

A shark bit me in the ass

I am in the most gut wrenching pain. I feel like a shark took a bite out of my ass. This morning I layed awake in bed until my fiance got up and I could ask him to help me out of bed. He went to help pull me up and I screamed out in pain so we tried to roll me out of bed instead. It was so incredibly painful and difficult to get out of bed I felt like the implant site was going to rip apart. I then limped my way to the bathroom to try to pee for the first time in 12 hours but no such luck. I was in such severe pain I could not even go to the restroom. After about 10 minutes I pulled myself up and went to take my pain medications. Last night after the surgery I think I took about 8 hydrocodone in total (in addition to the morphine that was probably in my system). This morning I took two hydrocodone (I'm supposed to take one every 6 hours) and aimlessly wondered about waiting for it to kick in becuase I cannot sit down. Well here I am 4 hours later and I still cannot sitdown or laydown. If I do sit or lay I feel like the implant site is being ripped out of my body. I have called the doctor and they told me to take as many hydrocodone as I want to but they wont give me anything stronger. So should I take half the bottle then if that is all that relieves my pain? That is not a very responsible way to take care of your patients. If they would give me something different I could probably take one pill AS PRESCRIBED and be ok. Now instead I will just endanger myself by taking more than the recommended dose. Assholes. I cannot even freaking sitdown on the couch. This sort of treatment of patients should be illegal. It is not right to make your patients suffer when they do not have to. I feel like no one understands how much pain I am in and they are instead treating me as a drug seeking which is so frustrating. My fiance is at work and I am home alone so I cannot get into bed because I will not be able to get out. Bad bad bad bad bad bad day.

Monday, July 20, 2009

Trial is out - Tomorrow is the BIG SURGERY DAY

So I have made it this far. The trial implant was removed last Friday. The appointment was pretty short and sweet (by short and sweet I mean under 2 hours). I went straight into the X-Ray room where the tech took several pictures of my upper back with the leads still in. I am guessing they will need to look at this during the permanent implant surgery. I got to take a look at the X-Ray and the left lead appeared to be tilted slightly out to the left. The Physicians Assistant didn't think the slight off placement would make that big of an effect, but it was clearly placed differently than the right lead. I then sat down with the P.A. and she talked to me about the differences between the permanent implant and the trial, namely how much more painful it is (which I am not excited about). She then cut two stitches holding each of the leads in and pulled them out entirely. It honestly did not hurt a bit. Although I was sad to no longer be "Bringing Bionic Back." :) No worries. Tomorrow at 7 am I will be bionic once again. I am also getting 1 additional lead put in on the left side a bit lower. They took another x-ray with a bb sticker on my back where I am having pain. They will use this as well in surgery. I am definitely in pain again without the stimulator. Today I am approximately a 6 whereas with the implant the highest I got to was a 2 (aside from surgical pain.) So wish me luck. I am probably about as prepared as I can be. I am supposed to think about exactly where I want the implant inserted on my butt, relative to where my pant waistband lies. But I am not sure how that is even relevant since they will mark me when I am in a hospital gown and not with my jeans on. Guess I will wing it. Mainly I am so nervous that I am going to tell the Doctor something wrong and I will screw up my chance for success. I probably won't be able to write tomorrow. If I did I am sure it would not be pretty. Thanks for reading. Wishing everyone a pain free day.

Below is an X-Ray I found of a Spinal Cord Stimulator Implant from the Mayfield Clinic. Mine is different in that the electrodes will be placed on my shoulder muscles and the extension wire would be much longer since it has to travel all the way from my shoulders to my hip.

Tuesday, July 14, 2009

Nearing The End ... Am I Ready??

So I have a few more days left for my trial. I think the worst part of the trial was definitely the first three days of recovery and being restricted by having the external wires. Otherwise it has been bearable. I am still getting great relief in my right shoulder but my left shoulder still not so much. I feel the stimulation in my left shoulder when I shrug my shoulder up towards my ear. I am not sure what this means, i.e. is the lead too deep, shallow, low, etc. I have made the decision at this point to go through with the surgery and will hope for better outcomes regarding lead placement. I am also going to inquire about adding an additional lead on the left side in between the left shoulder blade and the spine. I am still having some significant pain there as well. I think the possibility of placing an additional lead will be determined by the amount of power I have been using during the trial. The battery can only supply so much power so I am unsure if it will be able to support three leads.

My Biggest Fears ...
So as I am nearing the end of the trial and the permanent is less than a week away my fears about the surgery are becoming more real. The first thing I am really really really worried about is the lead placement. The doctors give you a sedative before you are brought into the OR. Once in the OR Dr. R will be palpitating my back and marking where the leads will go. I am afraid I won't be able to tell him the proper place which really worries me. My second major worry is going through the pain of lead placement again since I now know what it feels like. It is much easier to go into something like that when you don't know how bad it will be. Lastly, I am really concerned about the recovery. I have never been cut open or had staples so that will be a new experience. Also, Dr. must create a tunnel under my skin from my shoulder all the way down to my butt to run the cables. Then he will create a pocket in my upper buttock to implant the battery. Thankfully I will be asleep for the tunneling and the implantation of the battery. The recovery from the tunneling process is a daunting thought. But hey.. you got to do what you got to do right. All I know is that it is going to be much worse than the trial. I have made it this far... I am going all the way.

Saturday, July 11, 2009

It's Not FDA Approved??

Sorry for the delay in writing...

So two days ago I made an appointment to meet one of my Saint Jude Medical reps for some adjustments to my stimulator (I have two, Alicia and Jennifer). Jennifer called me the day after surgery and she had indicated that there are many different parameters that they are able to adjust with their computers that I am unable to adjust on my unit. Alicia is my clinical specialist rep who met me at the surgeon's office to do the adjustments. I cannot rave about Alicia and Jennifer enough. They are both really awesome at what they do. Plus I LOVE their jobs. So maybe when I get well they can put in a good word for an interview. ;) Ok ok. So back to the point. I sat down with Alicia and she hooked up an HP handheld device to my stimulator. She then began to tweak my current programs by adjusting the frequency, which is a measure of how many electrical pulses per second. At a higher frequency the stimulation feels like a more constant buzzing. At a lower frequency its a slower pulsating feeling like a boom-boom-boom. After toying with a few programs I realized that my preference is a lower frequency of about 30, whereas my previous programs went up to 90. She created 3 lower frequency programs for me and one additional one that was the same frequency, just at a higher strength (in case I became to used to the others). I am very happy with the programs now and I am getting great relief, except for in my left shoulder where I think the lead isn't place deep enough under the skin.

I also learned a lot of really great information from Alicia about my procedure. Numero uno being the fact that field stimulation for the trunk, which is what I have, is not actually FDA approved yet. Peripheral Nerve Field Stimulation actually refers to stimulation of the limbs. I am not sure how I was approved for the surgery since FDA approval trials have not even been scheduled yet. Oh well. All I know is that I am lucky enough to try it and hopefully it will become FDA approved so more chronic pain patients like my self can benefit from such amazing technology. I am pretty pleased at this point. I am not saying I am exactly looking forward to the final surgery, but I will look forward to the results.

Thursday, July 9, 2009

Day Three Update

So it is day three after my surgery and I would say I am doing much better. I still have a lot of swelling in the left shoulder from the extra digging around in the surgery which is pretty sore. I really think the stimulator is working though. One thing I have noticed is that I have been able to sleep on my back every night which I have never been able to do without neck pain. The stimulator feels like a slight tingling feeling and I do notice I have less pain when the stimulator is turned on versus it being turned off.

I wanted to go over the tasks I have been able to do in the past three days vs. what I have been unable to do so anyone considering this surgery can understand the limitations. First off, I was able to go grocery shopping with my Fiance the day after the surgery. Granted he pushed the cart, and grabbed the the groceries, and unloaded... but I was able tag along for the whole ordeal. Today I was able to work from home for awhile and went to the dog park this evening. I have also been to Wal-mart 2 other times since then, and to Sally Beauty. I was on a hunt for dry shampoo since I can't wash my hair. I found some that works pretty well called Batiste. So as you can see, overall I have been pretty active. Although the majority of my activity was with major assistance from my fiance.
My limitations are as follows:
  1. Cannot put on a seat belt or close the car door.
  2. Cannot get dressed or undressed without assistance.
  3. Cannot wear a bra at all.
  4. Cannot bend over.
  5. Cannot pick anything up over 5lbs.
  6. Painful laying on back where wires are implanted.
  7. Cannot shower.
  8. Cannot wear any tight fitting clothing.
  9. Cannot press the button to open garage door.
  10. Cannot brush back of hair.

Basically it is pretty essential for you to have some sort of assistance for at least the first three days to help with the basics. Hope this helps paint a better picture for what limitations to expect after the trial surgery.

Tuesday, July 7, 2009

Peripheral Nerve Stimulation Trial

So I received my trial implant today. Not sure if I'm ready to make a full out post yet, but I will edit and add details when feeling better. I am going to start by giving you a brief summary of the events of the day.

After checking in I went back to my surgery suite and got changed into my gown, etc. I first met with the nurse who took all my vital signs and got me started on IV antibiotics. Next Dr. Hanks came in. His function during the surgery was too keep me calm and focused since I would be awake. I then met with the ANS rep, Jessica, who was very nice and showed me the unit I would be wearing during the trial. After a few minutes with Jessica I met with the Anesthesiologist, Dr. Ku and finally Dr. R. Before wheeling me into the OR Dr. Ku gave me a bit of medication to relax.

After laying on the operating table everyone began to get started. I was still pretty aware of what was going on. Dr. R starting asking me many questions about where it hurt. After marking where I felt my pain he injected some local anesthetic and began the 6 inch journey with a needle up my back on the left side. It hurt like hell. I'm not sure if I did not have enough relax medicine or what but it was not fun. After inserting the lead they turned the stimulator on to ask if I was feeling it in the correct area. I told the Doctor that I did not think it was in the right area and he then proceeded to yell at me for telling him the wrong place in the beginning. Which was super nice considering I was already bawling from all the pain of shoving a giant needle in between my skin and muscles to get it in the wrong place. After that I think they must have given me more relax medicine because the placement of the second lead on the right was totally fine.

After the surgery I was in pain and crying and the nice nurse gave me some morphine in my IV to help out, along with an anti-inflammatory injection in my leg. This really helped and I was able to calm down since the pain was less intense. I then met with my ANS reps who turned the stimulator on and showed me the three different programs I have to choose from.

Ultimately right now I am a bit disappointed. The right shoulder feels fine and I think it is working. The left shoulder on the other hand still hurts like hell. I think they put the lead too shallow and an inch too far to the left... which doesn't mean this will not work. Even if there was bad placement in the trial, they can change things for the permanent as long as you think its working. I'm just worried because I can barely feel the stimulation. I think my mind is more focused on how my left shoulder hurts from being jabbed.

I am hoping for a better day tomorrow.

Wednesday, July 1, 2009

* The Day I Found Doctor D and Discovered PNFS

Before I went in for my last Rhizotomy I asked my Pain Management Doctor an important question. I simply asked him, "If this does not work, then what next?" His response was "There is nothing else, this is it."....

And so I was on a rampage to prove him wrong and find someone who could help me. I made dozens of appointments with Neurosurgeons and Orthopedic Surgeons to see if someone else had another approach. I found a Neurosurgeon who actually took the time to listen to what has been going on. Dr. D told me that he could not help me, but he knew of someone who could. That someone was Dr R., a Neurosurgeon at a highly respected back clinic in Texas.

Dr. R. told me about Peripheral Nerve Field Stimulation, an implantable pain management device implanted directly at the site of pain to intercept pain signals before they reach the brain. Dr. R has been performing this type of surgery for only a couple of years. I will be his first patient to undergo the surgery for the upper-back / shoulders. A similar surgery called Spinal Cord Stimulation has been in use since the 1960's.

After Dr. R told me I would be an excellent candidate for the surgery he located the trigger points on my back and marked them with tiny metal balls taped to my skin (they were like bb's). I then went and had a series of X-Rays done. I'm guessing for use in the surgery. I left the hospital totally confused. I just remember thinking "What? Someone is going to help me???" Terrible, but after dealing with Chronic pain for so long you just start to believe that there will never be a Doctor who can do some good for you.

Lastly, I would like to give a huge huge huge HUGE thank you to Dr. D who referred me to Dr. R. (I'm not sure if your supposed to use people's actual names on here.) Dr. D did not have to take the time to tell me about Dr. R, nor did he have to call Dr. R and talk to him about my case, but he did. Without Dr. D, I would never even know this surgery existed. As I have said before, there is almost ZERO literature on the Internet about this surgery, especially for my type of injury. That's where this blog comes into play. I want others to be able to be their own advocate and know what options are available... even if your Doctor doesn't tell you. I'm out.