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. 

Permanent surgery soon!

Wow I cannot believe I have not been back to my blog in over a month.  It has just been very busy and I have not felt well.  When my trial stimulator was removed, the Evil Headache was back at full intensity all at once 1 1/2 hours later.  It was terrible.  It has been terrible ever since.  I have been at about a level 8 for most of the time since. 
We also bought a new house - yay!  Moving has been really hard with the pain though.  I had to take so many breaks and stop what I was doing so many times it was ridiculous.  I have never had problems doing normal things like this until the Evil Headache came along.  Really I need a better name for it because "headache" just does not do it justice.  "Ice pick stabbing through the face exiting the back of the head along with another stuck in the side of the head" seems like a really long name.  I get really irritated whenever someone whines to me "I have a headache".  I want to punch them really!  I am having some anger/irritability issues from dealing with the 24/7 pain, is it obvious?! I cannot even drive without being afraid that one of my "exacerbations" will happen while I am driving.  I drove my youngest daughter to a field trip recently and it happened.  I went up on the curb but thank God that is all that happened.  I have basically been letting my darling husband drive me everywhere since then.  I try to explain it, but no one really seems to understand how bad these pains are that occur with the "exacerbations" (or as I call them "the stabs").  My body just shuts down and I cannot control it.  My eyes automatically shut if I am in bright light and I clutch my head until it starts to subside. 

Anyway, after waiting not so patiently I finally got word that my insurance company agreed to pay for the permanent surgery so I will be heading back to Tennessee again very soon and when I am able I will be back to blog about how everything went.  I have a terrible fear now that after I have the peripheral nerve stimulator implant done the pain will switch over to the other side.  I wonder if that has ever happened to someone with hemicrania continua?  Maybe I should do some research.  Wish me luck!!

Successful trial

Today I can joyfully say that I have had a very successful trial.  I was a little unsure at first because I had procedural pain and that pain was in the same areas as my pain normally is, making it sort of hard to decipher sometimes whether the stimulator was working or not because it was so sore there.  When I woke up on Saturday morning though, it was like the difference between night and day.  I had no headache and decided to try not taking my pain medication.  I was lucky enough to have a thunderstorm come that night also, which is one of my worst triggers.  I just changed the program on the stimulator and was good to go.  Still no pain meds.  I did get an answer to a question that I have been wondering for years now.  I wondered if I had the stim could I still get the bright red cheek that comes with the terrible headaches?  I did in fact get that bright red cheek but all the while I was chatting and laughing and felt much more like the old me.  I did make a stupid mistake though.  I got sleepy and went to bed forgetting to take my pain med (Kadian) that I have been on for almost a year now.  I woke up this morning sweating with chills and very nauseated.  It took me a few minutes to realize I had gone without taking any medication for 36 hours!  While I felt really bad for a couple hours this was still exciting that I FORGOT to take any medicine because my head was not hurting.  I am sort of emotional today.  My oldest daughter and I have not been getting along at all for a few weeks now and she even moved in with her biological father a few days before I went to Tennessee for the trial surgery, and now I am going back to Tennessee to have the stim removed but I don't want to chance infection so I will sadly give it up.  I am just not ready for trading in this wonderfully soothing massaging feeling in my head for the regular old pain pill taking, ice pack holding me.  Hopefully soon I will be headed to the permanent implant and my daughter will realize I am the best mom in the world (well one can only hope right)!

Trial implanted!

I had the leads to my trial stim implanted Monday the 13th and had the battery hooked up and the stim turned on Tuesday afternoon.  It has only been a little over 24 hours so it has not magically taken all my pain away.  I still have quite a bit of incision pain where the surgeon made incisions and then shoved wires through those and tunneled them under the skin - is that why I am hurting ya think?!  I am hoping in a couple of days I will be able to tell more of a difference.  The stimulation does feel nice.  It feels like a light massaging sensation to me.  I would trade that for excruciating pain any day!  I will post some pictures but if you are squeamish beware the bandages do have some blood on them.  I go back next week to have the trial removed and if it was at least 50% successful in relieving my pain we will plan to do the permanent implant surgery in 2-3 weeks.  At least I have a good excuse for lots of trips to Tennessee right?!  The people there are super friendly.  The entire staff at Cool Springs Surgery Center was awesome, not to mention my wonderful surgeon Dr. Rupert and rep from St. Jude, Rod - who was very patient with me and created several programs according to what I asked him for. I have one lead that I cannot use at the moment under my eye.  It hurts to stimulate it and the area is just really sensitive.  I am just going to use the other 3 leads for now and wait to see if that area feels better soon so that I can try that lead again. 

It's almost time to go for trial surgery!

My surgery is getting so close and I am SO excited!!  They will not turn the stimulator on until the day after it is implanted because they said they will numb my head up so much that I will not be able to tell if it is working or not the first day.  Now I am excited about my head being numbed up, yay!  I will try to keep the blog updated but my laptop bit the dust so I will have to try to use the computer in the lobby where we are staying.  If that doesn't work, I will update it after we get home.  We are coming home on day two if I am doing ok so that the hubby can go back to work for a few days.  He is trying to save his days off to help out when I have the permanent surgery if the trial is successful, as I will be needing more help with that surgery since it is a more difficult surgery while the trial is just a simple outpatient procedure.  Wish me luck!

Finally!

Yes, for once my annoying persistence has finally paid off!  I have been informed this morning that my trial surgery has been approved and if successful the insurance company has agreed to pay for the permanent surgery as well.  Woo hoo!  I could not be any more excited.  Now I have to get it scheduled.  I will try to keep everything updated here.  This only happened because 2 very nice people shared their personal information with me that was proof that the same insurance company as mine has paid for the same surgery for them.  After sending this they reviewed the info for about a week and they changed their mind.  It is sad that us patients who are suffering from so much pain have to go through so much to get relief.  Hopefully this is something that will finally help me get more of a normal life back.  I know it probably isn't a magic cure that will make me never have a headache again.  It is considered successful if you have 50% relief or more.  That to me sounds wonderful.  I believe I can handle daily life a lot better with a level 3-4 headache instead of 7-9.  We will just have to wait and see.  Wish me luck!

Little rays of hope

I just realized I have not posted anything since April!  That is because I have not really had anything to post about.  I have had worsened pain over the past few months to the point I have gotten emails from both my jobs because I have been so behind.  It just seems everyone in the world wants me to do something and all I have felt like doing is lying in bed with an ice pack.  I got another denial from insurance and they will not accept any other requests from my surgeon for that surgery.  They say they consider the review and reconsideration process "exhausted", to which my husband states he is exhausted from paying weekly for our insurance.  It is very, very frustrating.  I have been working on my own member appeal to send in and have asked family members to write some personal letters about how "the headache" has affected my life over the past 3 years.  But I also have had 2 things that have been somewhat encouraging to me. 

First, my local pain management doctor has his billing dept/insurance specialist talking with the rep from insurance about doing the trial surgery here locally in his office.  I had no idea they were even doing that!  I did not even know that my pain management doctor did surgeries.  I saw him for the first time on May 31.  Before then I had always seen a PA in the office except when he came in and met me and shook my hand before they put me out for him to do the cervical epidural.  He said he was not going to ask me to do any more injections as they only had such short term relief it really wasn't worth it.  He asked if anyone had ever mentioned a stimulator surgery to me before.  Umm.. yeah.  I have been battling for that surgery for a year now!  I told him how my insurance company had denied to pay for it a few times.  He says they are saying a lot of things are experimental lately and not wanting to pay for a lot of things now.  So I asked him if he could write a letter to the insurance company stating that I need the surgery and he said he would.  At no point did he say he would do the surgery!  I called the office about a month later to ask if he had ever dictated the letter and they transferred me to the billing department.  The lady there ended up being the wife of a supervisor where my husband works and he actually knows very well.  They have actually been to my home before.  My husband has done mechanic work on their vehicles.  She was extremely nice.  She said she had been in touch with the insurance rep and trying to get the surgery covered.  I was completely dumbfounded as I had no clue this had even been going on.  She said she would call me whenever she got it approved so I could schedule a surgery date.  That blew my mind!  Of course I haven't heard from her anymore and it has been a couple weeks now.  I am not losing hope though.

My second encouraging thing is a new chiropractor.  I started taking yoga classes and my teacher recommended I see her chiropractor.  She does not even see a regular doctor anymore, just goes to see him.  He is supposed to be an excellent diagnostician (is that a real word??) and diagnosed a condition she had with her heart.  He gave her some kind of supplement to take for that and she has been fine for 2 years now after being on it!  I thought it was definitely worth a shot.  I had my appointment yesterday afternoon.  This was not really like any other chiropractor's office I had been to in the past.  They always pushed me into coming for several times a week and crack my neck and send me on my way.  But he noticed lots of things no one else has, like one shoulder was higher than the other (I was told that as a child at scoliosis screening at school) and when he did the testing where you resist pushing I could not even stand up.  When he pushed I almost fell over every time.  When I was lying on the exam table he said one leg appeared shorter than the other also, one hip was pushed forward and the other backward.  After a long treatment with all kinds of things that sounded like power tools to me (at one point I was almost sure he was using a buffer on my back) he stood me up again and my legs matched, my shoulders were almost even and my headache had went down very minimally.  So he called his wife in to help him do a treatment he called "biocranial therapy".  This was painful but I think so worth it!  Usually when it rains I am useless and can do nothing but lie down with ice packs and wait it out the pain is so bad.  When I walked out of his office it was cloudy and began to rain on the drive home.  My headache was still low at around a 2!  I came home and went out with my husband to feed all the animals (we have a lot!) then came in and cooked dinner, cleaned up and started working but fell asleep while working.  All this time it was storming with lightning, thunder, etc.  I had a minimal headache, not a piercing, throbbing, make you wish you were dead headache as I usually do.  I slept like a baby.  This is without taking any melatonin, benadryl, etc.  I normally am up late at night because my head hurts so bad I cannot go to sleep.  I am cautiously excited.  It is a really sad thing, but now my husband and I are very cautious to be too optimistic about any treatments because it seems sometimes things help at first then the evil headache wins every time.  It has been trying to reappear in its usual form and I have gotten occasional more painful  jolts but it is still lessened this morning.  I know it may not be a magical cure but if this treatment brings the level of my headaches down like this all the time I can definitely be a lot more productive.  Speaking of productive, I guess I better get back to work!