Feeling much better now

It has been about 2 1/2 weeks since my permanent peripheral nerve stimulator implant surgery and I am feeling completely different than my last post.  I have been doing a whole lot more.  I am still being very careful not to do things to cause my leads to move, but I have been up and about a lot.  I no longer have any swelling.  My darling husband has taken out all of my staples and sutures tonight, and my incisions look really good.  I will update photos soon but tonight I am too tired.  I was all worked up ready for it to be excruciating but it was not at all.  My husband was very gentle and did a wonderful job.  I would be completely LOST without him and I owe so much to him.  I feel so completely blessed to have the wonderful family and friends that I have.  I am looking forward to enjoying life much more with these terrific folks.  I have had many mornings that I have woke up with no headache whatsoever.  I have found the trick for me is to leave the stimulator on all night but at a very low setting.  The first time I woke up with no headache I felt like telling the whole world.  It is a completely new experience for me.  I used to wake up every morning to excruciating stabbing pain in my head and wish that I had not woke up at all.  I do NOT miss those days!  I am feeling very hopeful that I am beginning to get my life back.  I really feel that all of the fighting I did for my surgery was so worth it that I would do it again without any hesitation at all.  It was an emotional roller coaster for sure but what a happy ending so far!  I never would have imagined the day I read the first article about ONS surgery how my life would be so changed.  I hope my positive results and many other patients going through the same will help get FDA approval eventually for this wonderful tool for people suffering so badly with head and facial pain.  WARNING:  Topic regarding female issues:  My first major test for the stimulator is my first menstrual period since my surgery.  My periods are my worst headache trigger and usually have me in bed crying for at least two days due to the increased head and face pain.  Not this time!  I was completely surprised when it started because I did not have the blinding headache beforehand.  Now the next test will be thunderstorms.  I am crossing my fingers for that one!  It just happened to be storming the first time I saw my surgeon Dr. Rupert and I was at my worst on that day.  I am nervous and excited at the same time to see how I do through a thunderstorm with the stimulator.  I have eaten chocolate on several occasions since surgery by the way, and it has been just fine.  I love my stimulator!  I am seriously thinking about naming it because it is so dear to me (and my family!).

Recovery is slow

I had my permanent peripheral nerve stimulator implant surgery October 1.  It was not powered up until October 3 because we had to wait until some of the swelling went down first.  I thought I would be feeling fantastic by now but unfortunately I am still VERY sore overall and having a hard time getting around.  I have learned to give up and just lie down because every time I am up and around for any amount of time my swelling increases, which causes more pain.  The headache aspect is so much better though that it is amazing.  I have only had one episode of what I call "the stabs", which the doctors call "exacerbations" since my stim was turned on.  Mostly I am just sore from the incisions and surgery itself.  I am very afraid of having my leads move as I have been hearing more and more stories of that lately so I am taking it VERY easy for as long as possible.  My husband has been extremely amazing throughout all of this.  I would not have made it without him.  My youngest daughter has been so very amazing and helpful also.  All family and friends have been great too, as well as the ONS support group on Facebook.  It is so great to have so many people to talk to when I am feeling bad, good, or whatever!  I got a new crazy haircut again, but thankfully my hair is long enough that when I leave it down it covers it up so you can't even tell.  That would not be a major issue anyway for me.  I told a doctor before that I didn't care if my whole head had to be shaved, and I still feel the same way.  My surgeon, my St. Jude Medical rep, and the whole staff that worked with me at Cool Springs Surgery Center were all wonderful.  I don't think it could have gone any smoother. 

Tough day

Ok, so I am feeling really sorry for myself today and needed to vent.  It has been a really, really bad pain day.  On top of that the insurance specialist from the doctor's office called and said that my insurance company would not do a precertification or predetermination for the surgery so we have no clue whether they would consider paying or not.  My husband called the customer service number and I eventually just got the phone myself to talk to the (rude) customer service rep.  I explained to her the situation and what the surgery was.  She said if it says in the medical policy that it is considered investigational (which it does on the website) then there is just no coverage.  Period.  So there is no hope???  Who knows.  The insurance specialist is gone for the day, doesn't work on Fridays, and Monday is a holiday.  So it will be at least Tuesday before I can possibly get in touch with her again.  I have to get the procedure codes she used when she contacted the insurance company before I call back and talk to the rep for the group policy. 

All of this has just made me really upset today.  I am sort of unsure why.  I knew it could possibly be a long, hard process to get the insurance company to pay for the surgery.  I guess it is just because everyone I talked to on the phone today just seemed to be so completely nonchalant about it.  Oh well, sucks for you doesn't it?  That is basically the vibe I got.  I guess if they had to live their day to day life feeling like a knife is stuck in their head they might be a little more sympathetic.  Most people hear the word headache and think of taking medication, lying down for a little while and then feeling all better.  Nope, not for me.  I actually daydream of going back to the point in my life when I had migraines.  I would give just about anything to be able to only have a headache even once a week.  This constant day and night pain more of the time severe than not is probably going to drive me insane.  It has been over 2 and 1/2 years now.  I honestly believe that if I did not have a family I would not be alive today.  Without people who loved and depended on me I just wouldn't deal with this pain anymore.  I try so hard every day to enjoy my life, I mean really, really hard.  I put on a smile and pretend to be perfectly fine every day.  Everyone says "I don't know how you do it."  I honestly don't either.  I guess the hope of one day being able to have the surgery that seems to be my last hope has been one thing keeping me going.  I can no longer enjoy reading a book to my daughter, dancing, singing, playing, exercising, long conversations, laughing a lot, going to the movies or a concert.  I'm sure there are many more things but in this pain filled haze my brain isn't working right today.

Frustration

I am frustrated to tears today!!!  When I saw the doctor in NC he suggested that my doctor prescribe me a new medication that he thought worked better on head pain and had less side effects.  I called my headache specialist's office the Friday of 2 weeks ago and the receptionist said she would pull my chart and ask him. I never got a response so the next Monday I emailed him.  Still with no response by Wednesday I called again.  The receptionist stated that he had been very busy and maybe would get around to reading my email that day or possibly the next.  Still no answer today (1 week later) so I call again.  The doctor is not in the office (of course).  The receptionist pulled my chart and he had written a note on my chart saying that he doesn't know anything about that medicine so he wasn't going to prescribe it, the doctor in NC could prescribe it.  Problem - that doctor did not want to prescribe medications for me since he is 3 states away and thought that my doctor who has been treating me all along should do that!  So I said if he isn't going to do that I need a refill of my normal pain medication.  I am allowed the HUGE dose of 2 tablets a day for 24/7 pain.  The receptionist stated that the last prescription he had written for me in February was for #20, take 2 a day.  I was holding the bottle while talking to her, which states #60.  I explained that #20 would only last 10 days since I am supposed to take 2 a day.  Am I supposed to go to the pharmacy every 10 days???  I called the doctor's office in NC to check on insurance approval and of course had to leave a voice mail.  Maybe I will hear back from them sooner than the other doctor!  I just don't know what to do anymore.  I am in so much constant pain and can hardly do anything anymore.  I just really need some relief.