40 Shots To The Head

So September was Chiari Awareness Month and I purposely didn’t post anything about it because to tell the truth I’m not a big fan of any type of “Awareness Month”.  There are only 12 months of the year and every single one of them has multiple “Awareness’s”.  A quick search for September shows that it’s also, Pain Awareness Month, Childhood Cancer Awareness Month, Lymphoma Awareness Month, Leukemia Awareness Month, Ovarian Cancer Awareness Month, Dystonia Awareness Month, National Suicide Prevention and Awareness Month.  That’s not even all of them.  I had to look up Dystonia and it sounds painful, here is a quick blurb about it… The main symptom is involuntary muscle contractions that result in slow repetitive movements, cramps, or abnormal posture. I know the main purpose of this blog is to spread awareness, and maybe I’m a jerk for not promoting it during our Awareness Month, but it just seems wrong to go crazy with awareness for one month, I guess I’d rather spread it out.

Warning…If you don’t like needles, or the thought of needles makes you squeamish you aren’t going to like the rest of this post. 

Back on August 12^th I was scheduled to start getting my Botox injections again and I was very excited, well I was excited until my phone rang at 9:00am that day.  It was my neurologist’s office calling to tell me that the wonderful CVS Specialty Pharmacy hadn’t delivered the Botox and therefore I would have to call CVS Specialty Pharmacy and get it straightened out, then I could reschedule the appointment.  What started out as a great day turned ugly very quickly; needless to say I didn’t have the friendliest disposition when I called them.  So after a good 20 minutes on the phone with my good friends, no make that the jackasses at CVS Specialty Pharmacy, I was able to get a promise from them that it would be delivered the following week.  Another call to Dr. Boor’s office and I was all set for August 18^th. 

This appointment turned out to be one of the longest and most interesting ones I have ever had.  Story time…I arrive early for my 9:00am appointment and notice that there is a Department of Public Works crew digging on a side street across from the office, I really didn’t pay much attention to them because there is always something going on in Greenville.  At this point everything seemed normal, I filled out the annoying paperwork – you all know how I feel about paperwork – get taken to an exam room and settle in for my usual hour wait for Dr. Boor to come in and see me.  I’m sitting there checking and responding to work emails when a most unpleasant stench takes over the room, it was nasty to say the least.  It turns out that the Public Works crew hit the sewer line and that resulted in bad things happening to that crew and the air quality in the office.  Thankfully a nurse came in very quickly to tell me what happened and to move me to an exam room on the other side of the building and too much, much fresher air.  As I settle into my new surroundings I can hear voices from the other side of the wall.  It seemed like it was nothing more than office chit-chat until I hear “I don’t know where Doctor is, he’s not here yet”.  My heart sank, it sank even further as the door opened and a nurse stepped in.  I just knew she was going to tell me that Dr. Boor wasn’t going to be there and that they would have to reschedule my appointment.  I could feel my heart pounding in my head as my blood pressure rose.  I was relieved – not happy but relieved – when she told me that Dr. Boor was delayed during rounds at the hospital and would be there soon, she 'hoped'.

After another 45 minutes had passed he finally came into the exam room, syringes in one hand and my Botox in the other.  It was on, woohoo!  He told me that he would be giving me 40 injections in my head and neck and to make sure that I told him when the needle was no longer sharp and he would switch to another syringe.  I asked him how I would know when the needle was dull, he laughed a little bit and said “oh, you’ll know”.  Then he explained that when they get dull they basically get a little bur on the end and you feel the needle “pull” as he takes it out.  It’s a weird feeling, but you definitely feel the “pull” when those suckers get dull.  You may remember that I started Botox back in New York.  My neurologist there only gave me the shots in the areas of the head where they would give them to people that suffer from Migraines, and that was starting to give me some relief.  Dr. Boor is much more concerned with relieving Chiari headaches.  He not only covered the Migraine areas, he also injected the “crow’s feet” area around my eyes, and wow is it a strange sensation getting shots that close to your eyes.  The idea of injecting the Botox around the eyes is to help relieve the “I want to gouge my eyes out” pain that I often get.  He checked for knots in my shoulders near the base of my neck and shot me there to help relieve the grip the knots have on the nerves there.  He also checked for knots around my zipper, again to relieve the grip they have on the nerves in that location.  There was a little bit of Botox left after all of those injections so he decided to give me a little extra in the area of my “frown lines” just for good measure. It's been two months since the Botox injections and I'm already starting to feel some decrease in the pain, and the cosmetic effects are awesome.  I get the next round of injections on November 3rd, of course pending delivery by the jackasses at CVS Specialty Pharmacy.

While he was giving me all of these shots and for quite a while after he was done he was telling me about how he was a Biomedical Engineer prior to becoming a Neurologist.  He worked with the Air Force and his job was to determine the impact of various explosives on materials the Air Force used in construction projects.  He even got to do this at the old NORAD site, both inside and outside the mountain, and in, yes in missile silos (they removed the real missiles and used dummy ones).  It was so cool hearing about what he did that I didn’t even mind that I’d been there well over two hours.  I couldn’t help but wonder why he was able to spend so much time with me, especially after being so late.  I got the answer when I left the building…I was the only patient there, they had to close because of the sewer issue.

We did discuss one more thing.  The Lyrica and the Botox are being used to minimize the pain and to try and give me longer periods between the really bad headaches.  So far we haven’t been able to “break” the headache, hence the reason I have a headache 24/7, 365, thanks to the surgery not fully relieving the pain, but hey at least I don’t walk into walls (as much).  He offered a way to try and “break” the headache; it’s called the DHE Protocol, or the Raskin Protocol.  According to Dr. Boor and from the literature I’ve found it is very successful in “breaking” these non-stop headaches.  The DHE Protocol involves more needles.  This time it’s an IV that delivers a drug called Dihydroergotamine, the drug is delivered over not one, not two, but over three days.  So I’d be looking at spending a minimum of three days in the hospital.  I’m not sure yet how I feel about this, because I’m not a fan of hospitals and because when I had the Chiari surgery they said I’d only be in the hospital about three days and instead I spent nine days in the hospital.  I guess I’ll have to see if my insurance will cover it and how many of my children I’ll have to sell in order to pay the hospital bill.  Since I’ll have to deal with my insurance company there will be another story with lots of swear words…you’ve been warned.

Insurance and Lyrica

Since it’s been longer than planned between updates I figured a little recap was called for.  Warning there is some adult language ahead, be on the lookout for possible F-Bombs. 

Due to the move from New York to South Carolina we had to change insurance providers.  Our new insurance company in their infinite wisdom decided that they wouldn’t approve Botox treatment even though Botox had been the one therapy that was helping and had been approved by our insurance company in New York.  They decided that they wouldn’t approve it until I jumped through hoops, did a little dance, and tried various other drugs. The bastards basically said “screw you”.  I guess to be fair to the insurance company Chiari headaches aren’t really migraines which is what Botox is approved for, they are more like atypical migraines with pain that can encompass the entire head and that never goes away.  If you’ve ever had a migraine imagine having one almost every single day of your life followed by bad headaches the other days and that’s sort of what it’s like living with Chiari.

 

So since Botox was out for now my new neurologist sent me home armed with headache journals, various medication samples that were to be used to try and break the rally bad headaches and a prescription for Lyrica.  Let me tell you right up front that the med’s we tried to break the headaches with did nothing.  We tried Isomethept, Relpax, and Diclofenac just to name the ones I can remember.

Back to Lyrica, yes the Lyrica you see on television that’s used for diabetic nerve pain and fibromyalgia, and where the voice over guy talks about a long list of side effects like “serious, even life threatening, allergic reactions”, “suicidal thoughts or actions”, and “weight gain”.  Before I started taking Lyrica every time the commercial came on it made my inner voice over guy say “may cause death or other serious side effects, but hey you won’t have any more nerve pain”.  For the record the only side effect I’ve experienced is a little weight gain.  There is however a side benefit to taking Lyrica, it calms involuntary limb movement.  Involuntary limb movement is one of the other gifts I have, my legs jump and move involuntarily when I lay down or even just relax on the couch, my arms like to get in on the act too.  The movement isn’t always perceptible like when the muscles are spamming but it is maddening.  This involuntary limb movement makes getting to sleep almost impossible not only for me but also for my poor wife.  Between the nightly “Chiari Shuffle” while trying to find a position that makes my head and neck comfortable and the crazy legs doing their thing and of course the apnea induced snoring once I am asleep I can’t believe my wife hasn’t moved into one of the other bedrooms so she can get some sleep.  Joyce, you are a saint!

You don’t just start out at a high dose of Lyrica you have to start low and work your way up; I started out at 50mg per day and worked my way up to 600mg per day.  Right from the start Lyrica calmed my crazy legs and I started getting much better sleep.  Once the dosage got up to around 450mg per day the headaches started getting much more bearable.  I was even able to build a foundation for our shed and didn’t have to go lay down to recover when I was finished,  usually that kind of physical activity would result in a long visit to our bed with the pillow over my head.  Things were going really good while I was on the Lyrica, I still had a headache 24/7 but the pain was less sever and it felt like I had my life back, then one day in mid-January 2016 my head exploded.  It didn’t explode in pain, it exploded when I went to pick up my Lyrica prescription and the pharmacy told me that it was going to be almost $500!!! That’s a freakin’ car payment!!!  My health insurance had once again screwed me over; they were no longer going to cover Lyrica.  They wanted me to try other therapies to see if something less expensive would work.  I wanted to call them and once I got a human operator say “Fuck You” and hang up.  So my doc switched me to Depakote which is normally used for treatment of epilepsy, but also helps people with migraines.  There are usually little to no side effects from Depakote but there is one side effect that hit me hard while on Depakote, sever muscle pain.  I could barely walk it hurt so much, as you can guess I stopped taking it.  I went back to taking fistfuls of Advil, and the crazy legs came back which meant less sleep which means worse headache pain.  So January through May was basically hell on earth for me and my family.  I’m not exactly fun to be around when the pain is really bad.   Then in June Dr. Boor tried to get Lyrica approved again, it was approved, but with our high deductible plan it’s still a car payment until I hit a certain amount out of pocket, blah blah blah, insurance bullshit, blah, blah, blah but at least I’m back on it and the severity of the headaches is going down.  And the crazy legs are no longer crazy.

In the meantime - thanks to the headache journals and my neurologists’ persistence - after more than a year our insurance has finally approved Botox, of course the insurance jerks only approved it through the end of this year.  I wonder what hoops I’ll have to jump through starting in January, I guess proof that I average 18 migraine days per month, sometimes more sometimes less, and a regular old pounding-throbbing headache the other 12 or so days of the month wasn’t enough to get it approved past this year, UGH! But back to the good news, I go to see Dr. Boor this Friday to start the Botox therapy, sure it’s 30 some-odd needles to various parts of my head, face and neck but I can’t wait to get started.  Plus I’ll have a nice wrinkle free forehead.  The hope is that between the Lyrica and Botox I can get down to maybe 5 migraine days per month, I can live with that, I just wish I could schedule which days they happen.

My New Neurologist

Now it’s time to talk about my new neurologist, Dr. Boor.  My requirements for a new neurologist were that he or she had to be the best in the area and had to be able to administer Botox since I had gotten some relief from using that under my New York neurologist.  Dr. Boor isn’t the closest neurologist to my house but totally worth the 30 minute drive for my appointments.  I’m so glad I found him, wait I didn’t find him, one of my wife’s co-workers gave me his name, but anyway he’s great.  He has at least one other Chiari patient so he’s familiar with the symptoms and knows what we are dealing with.  One of the things I like about him is that he will spend as much time as needed with you during your appointment, will gladly answer any and all of your questions, and he'll listen to and actually respond to your concerns.  Of course this is great when it’s your turn to see him, not so great when you are waiting for him to finish with the previous patient, and the previous patient won’t shut their yap.  Most appointments go something like this…Barely sit down in the waiting room, get taken to the scale, go directly to the exam room for vitals, then wait, and wait, and wait for him to finish up and then come into the exam room where I have been not so patiently waiting.  It’s a common occurrence to have to wait in the exam room for almost an hour, thank God for smartphones; at least I’m able to answer work e-mails while I’m waiting my turn.

Bear with me while I tell a tale of woe that seems like it has nothing to do with Chiari but turns out is very relevant to my journey.  Let’s talk about Kidney Stones! WORST PAIN EVER!!!!! Last year we came down to South Carolina in April to look for and purchase a house. It was quite hot that week and I must have gotten a bit dehydrated because on the day we were leaving to drive back to New York I woke up in the middle of the night with pain unlike any I had ever experienced, it was the WORST PAIN EVER!  I had never had kidney stones before so I had no idea what was wrong I just knew I couldn’t stand the pain and all I wanted to do was curl up in a little ball and pray the pain away – more like swear the pain away.  In case I didn't make it clear, I was experiencing the WORST PAIN EVER?  My wife informed me that it was probably kidney stones and that she was taking me to the ER.  I knew by the tone of her voice and the look in her eye’s that I was a dead man if I said I didn’t want to go, so off we went to find an ER in a city where we had no idea where one was located.  Of course being as awesome as she is my wife found an ER almost instantly. When we got there I paced around the waiting room like a madman, of course the pacing only occurred when I wasn’t curled up in a chair, it was like some kind of weird dance that I hoped would reduce the pain... Pace-sit-curl, pace-sit-curl.  When the nurse came out to take me to an exam room he took one look at me and said “you have kidney stones, I could tell by watching you in the waiting room, you are doing the dance every guy that has kidney stones does”.   After getting settled into an exam room it was off to the CT scanner, where they confirmed the kidney stones.  Did they really need to do a CT scan, I mean I had already been diagnosed by two extremely smart people, the nurse and my wife.  Did I mention that I also had a brutal headache all this time, I know shocking isn’t it?  Back to the stones…the nurse tells me he’s going to give me a drug that is like 8 times more powerful than morphine.  I’m thinking to myself “big freakin’ deal it ain’t gonna work” because as with any high powered pain killers I had ever taken it won’t do anything for me because nothing has ever gotten rid of my headaches; I figured my body just doesn’t respond to narcotics.  Wow was I wrong, that stuff took away the pain from the stones almost immediately. It was great, hell everything was great after that stuff kicked in.  Of course being cranked up on some serious pain killers meant I couldn’t drive so my poor wife had to handle the driving duties back to New York.  Oh and all those wonderful pain killers didn’t even touch the headache, no surprise there.

Back to my neurologist story… I’m at my first appointment with Dr. Boor and we are going through my medical history both past and present.  I tell him the story about the kidney stones and how that wonderful pain killer took care of the kidney stone pain but didn’t even touch my headache.  He stops taking notes, looks at me and says, ”Narcotics won’t do anything for your headaches”.    I don’t know why that statement blew my mind, but it did.  By the end of the appointment we had a new treatment plan.  I went home with headache journals, some samples of drugs to use in an attempt to try and break really bad headaches to see what would work and what wouldn’t and a prescription for Lyrica.  You’ve probably seen the commercials for Lyrica on TV for diabetic nerve pain and Fibromyalgia.  It is also prescribed for spinal cord injury nerve pain.  Dr. Boor has had success using it for his patients that suffer from headaches, so we decided to try it. 

My next post will be all about my Lyrica experience and the joys of dealing with a new health insurance company.  I’ll warn you now that the next post may contain some really bad language.

New Doctors

Paperwork, paperwork, paperwork!! I hate filling out paperwork!!!  There are two reasons I hate filling out paperwork, number one I have no patience at all and I mean none, and number two I have the worst handwriting, I bet that has to do with my lack of patience.  It’s so bad that it’s kind of embarrassing, I often wonder what the receptionist thinks when she has to transpose the mess I just handed her.  There are times I make notes for a work project and when I go back to review them I can’t figure out what I wrote.  Ugh!  Well anyway, due to the move and finding new doctors I have been filling out a lot of paperwork lately.  There was no real reason for the paperwork rant I just felt like getting that out…let’s move on shall we.

The decision to move to another state was a bit scary yet exhilarating at the same time.  However, the prospect of leaving behind my established medical care team was downright terrifying.  I think the reason it was terrifying for me is that I don’t like change; even a small change to my plans or schedule makes me crazy. I guess one of the great things about the move was that it forced me to deal with my aversion to change.  So I put on my big-boy pants pulled the belt tight and charged ahead.  The other big change was insurance, just thinking about health insurance gives me a headache, maybe my opening rant should have been about dealing with a new insurance company. Anyway in order to make the insurance company happy I had to find an in network General Practitioner (GP) and get an appointment and a referral before I could go see the neurologist.  I know getting a GP and a referral doesn’t sound like much of a big deal but every delay meant it was one more day with increasing pain.

Thankfully my wife was able to get me some recommendations for the best neurologists in our area from her South Carolina coworkers prior to the move, so that helped ease that change for me.  As far as a GP went I was on my own, but that wasn’t really a concern for me since the GP had to deal with everything except my brain.  However, I did have some criteria for picking a new doctor and the most important one was that he had to be close to my age.  I figured that as long as he wasn’t too much older than me then I wouldn’t have to worry about him retiring on me in a few years and then I’d have to go through the whole ‘find another doctor’ thing again.  I began my search by checking out the practice closest to my house, they had some young doctors which was good but weren’t accepting new patients which was bad.  So after a bit more research I found a practice somewhat close to my house that was accepting new patients, checked out their website and picked the youngest doctor on staff.  This highly scientific approach to finding a GP yielded a great doctor and…drum roll please…he is familiar with Chiari Malformation, holy crap I never thought I’d get to say that about a doctor.  When I got to my first appointment with him I was in full warrior mode and all set to have to explain Chiari to him, have him look at me like I just told him about a disorder that I made up, and have him continually mispronounce it which for some reason annoys me.  But no!!! He enters the exam room goes through the usual pleasantries, runs over my vitals and past medical history.  Then he says “So you have Chiari Malformation” – he pronounced it correctly, let me just say that again, he pronounced it correctly – he then starts asking me about actual Chiari symptoms I had leading up to the surgery, who did my surgery, did they have to remove any part of the cerebellar tonsils, what my post-surgical symptoms have been and what symptoms I got relief from.  He must have noticed the confused “what the hell is going on here” look on my face because he stopped mid-sentence and told me he has another patient with Chiari.  I was so happy that I found a doctor that knew about Chiari that I didn’t get angry or give him a nasty look when he reminded me that due to my age I will have to have a colonoscopy next year.

I’ll leave you with that thought.  The next installment will be all about my neurologist.