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. 

New info

I had an appointment at my pain management doctor's office today.  I found out that I do in fact have arthritis in my neck by the MRI done, and also by the nerve conduction study done there is an issue with the C7 nerve on the right.  I had been thinking maybe I was having carpal tunnel symptoms on the right  but this could obviously be caused by that nerve.  They are starting me on a medication called Limbrel.  I was told it was an antiinflammatory so I immediately looked it up.  I cannot take NSAIDs anymore so I was just not going to get it filled.  But it actually sounds good.  It is a "medical food" product according to the website and is not actually an NSAID so is not supposed to cause GI issues.  Who knows maybe it will help the headache.  One can only hope!

Maybe I'm the one...

I was thinking of the song Psycho by Puddle of Mudd and can't help but think of my latest conversation with the "insurance specialist" in the NC doctor's office.  I love the doctor and the fellows that I have spoken to and also every other person on staff that I have spoken to and/or met.... that is except for the insurance specialist!  For some reason it just feels like she has a strong dislike of me!  That is where the song comes in, feeling somewhat paranoid.  I have no idea why she would dislike me but she just is very short with me.  When I told her that I had talked to a few people that fought insurance companies and got the occipital nerve stimulator implanted, they got it through the appeal process, meaning I can't appeal anything until they submit a request, she said "Well I just don't believe that, these people must not have understood exactly what you are talking about" to which I calmly replied yes, we had extensive discussions and it is the same exact surgery, to which she replies she still doesn't believe it, like I am just making things up.  She then says "Well maybe you can just go to whatever doctor they went to" at which time I say that I would like my medical records so she promptly transfers my call to the medical records department.  The person there of course was very nice and helpful (go figure).   Oh well, starting over again is a little depressing but I have been waiting since July and she has done nothing.  She talked to a representative from my insurance carrier and faxed some medical studies about occipital nerve stimulation to her.  I spoke with the insurance rep who actually was much nicer than her who was confused as to why only research info was faxed to them.  They need the doctor to actually request coverage for my surgery before they can review and make a decision.  The insurance specialist at his office will not because she says it will be immediately denied.  I feel like this one employee is causing the doctor to lose money.  Maybe they will figure it out eventually.  At first I thought about calling and speaking with the office manager about it but then I just decided to forget it.  We chronic pain patients already are on thin ice with some folks thinking we are nuts already, like we are imagining our illnesses and they are "all in our heads".  I don't have the energy to talk to another person unless I have to.  I know that is sad but it is true.  I don't want to talk unless it is a person who is important to me I am talking to, as each word actually hurts my face and head to speak.  Anyway, enough whining from me today.  I am going to try to add a link to the YouTube video for that song.  Of course for you other headache sufferers you might want to turn the sound down like me! 

http://youtu.be/pDdeOncpD5E

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.

What the...

Ok, so now something totally different is happening.  Now the right side of my head has been hurting this afternoon.  Strangely enough the right side of my head hurt and my left cheek was red and hot.  What is going on with my crazy body??  Tonight however I am back to the same ol' headache on the left and red hot cheek.  I wonder if I need to ask to have leads placed on both sides if I actually get to have the stimulator placed?  Now I am wondering a little bit about my diagnosis.  I have read a couple of articles about a person having hemicrania continua with side shift, but it seems to be very rare.  Up until now I have never had a doubt.  All the symptoms matched.  Who knows?