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 12th 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 18th.
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.
