willandadri.com

last tuesday lazaro (pa) called and threatened will and i with more surgery to resolve the camel hump on the back of his head.  the thought of this sent us into a tail spin worrying about all of the progress we’d made thus far and how more surgery would be so devastating to both of our spirits,  will’s lack of vacation time, the length of time you had to be out of work before he could claim his disability, and if we really could emotionally handle all of this once more.  monday was the fateful day we were to head back to duke to speak to zomorodi and see what he suggested.

we prepared for the worst and both tried to stay calm before the appointment.  we nervously sat in the waiting room waiting for his name to be called and made our way back to the office.  once in the room he looked at will’s hump (what he likes to call a pone) and declared that it looked smaller and not as tight as it was the last time he took a gander at it, and decided that he’d just do a spinal tap to remove some of the pressure and then wrap will’s head as tight as he could to try and force the fluid back down.  most people (including will, since this was being done to him) would be terrified at the though of a spinal tap, but i threw him right under the bus (totally full of passengers) and said that it sounded like a great idea to me!  after i shot my big mouth off i glanced his way and he agreed that he was up for anything to avoid more surgery.

they quickly prepped us for what was about to happen and told him to get into a gown, get into a curled up cat position (otherwise known as the fetal position) and to bring his legs up as high as he could.  when his holding of his own legs were not high enough up, i offered to assist.  after three attempts with longer needles and more lidocaine and will still in terrible discomfort the doctor just could not torture him anymore and told him he would have to have it done under x-ray.  i could tell how disappointed will was since now he would have to torture himself about it for the next 24 hours.  after getting him suited back up and scheduling the appointment in x-ray for the following day we headed back home.

this morning we headed back to duke, this time to the regular hospital – not the clinic – and headed to radiology for the spinal tap procedure.  will’s hands were shaking, both from nervousness and the 400mg of caffeine i’d filled him with.  we got him settled into the waiting room and again waited for his name to be called.  they brought us both back and showed us the x-ray machine and we explained our nervousness and they tried to ease will’s concerns and explained the procedure to him.  the radiologist said he felt this would be less painful since they know exactly where they are headed.  after they did the intro they kicked me back out into the waiting room.  they’d explained previously that they would keep him lying down for about 2 hours to ensure that he did not get a severe headache from the procedure, so when i saw the bed being wheeled in about 30 minutes later i knew he was all done and ready to be moved to recovery.  the radiologist came out and gave me a thumbs up, and off we went.

they let me stay with him for a few minutes just to give a smooch and then he was headed to recovery.  the nurse told me that if i had not had lunch that this was the time to go.  i headed to the very familiar cafeteria and picked up my regular sushi and cucumber platter and sat at a table and began texting everyone the good news.  as soon as i could scarf that down i picked up a frappuccinno for will out of the cooler and headed back to the waiting room.  the nurse finally called back and said that i could go back now.

will looked good and said he was not in much pain, just feeling pressure right now.  he explained the procedure was not smooth sailing like they thought it would be, but he survived and lived to blog about that himself.  i’ve nicknamed him “aunt jemima” due to his head wrap.  (he looks like a cutie.)  right now the swelling is totally gone and the back of his head is completely normal in the wrap.  the wrap stays on for 48 hours and we just pray that this does the trick and has will completely on the right track this time.

overcome with gratitude.

dozens of people have come to our rescue.  we’ve been given dinners, desserts, groceries, a/c filters, assistance with chores, offers to run errands, our lawn fully mowed, our plant beds fully weeded, favorite meals delivered, baskets of fruit, baskets of get well and relaxation therapies, plants, almost 100 cards, countless phone calls and emails, and uncountable numbers of prayers for healing.

its humbling to accept the outpouring of other’s hearts.  we honestly never knew we had this much support in our lives, and its times like these when they tell you that you find out who your true friends are.  what we found out is that we have more true friends than we could ever imagine.  we thank GOD daily for all of the blessings in our lives, and the times we have to spend with each other and with our friends and families. 

i could never offer up enough thank yous to everyone who has gone out of their way to make sure that we were well taken care of and never left alone.  these three simple words just do not seem to do it justice, but its all we can offer – WE THANK YOU.

today was will’s first haircut since he had surgery back in april.  he was a bit nervous about going for the cut, but happy to get it over with.  a hair cut just always makes you feel better, and mario (will’s barber) always talks with him and does a great job.  having the hair trimmed down makes it easier to see this bump thats creating all of the havoc over  here.  hopefully now we can monitor it a bit more easily.  we will keep our eyes on it and pray for good news at the neurosurgeon’s appointment on monday.

Today has been a very good day pain-wise so far.  It is a bit frustrating that I still don’t know what causes a day to be better or worse.  But I’ll take any good times that come my way.

I am still continuing to learn daily. Such as squatting as a pain-free alternative to bending over.  And using my elbows to ease myself down onto the pillow in bed so less strain is put on my neck and shoulders causing less pain.

I am truly realizing what all of the complaints about lack of after-care mean. My doctors provide reasonable care but I imagine they are just as clueless as I am.  While there is a common set of symptoms that may indicate CM and/or SM, not everybody experiences them.  I was recently reminded by a Facebook friend of this when I was feeling down as she mentioned that her husband’s head pain lead to a diagnosis while in my case there was no head pain but instead back pain.

It almost tends to isolate you if you aren’t careful. There are certainly fantastic support groups and people out there who are on a similar journey as you and can empathize and provide strength and support.  The fact still remains however that we are all on an individual journey.  Our symptoms are similar but not the same, the surgeries performed to alleviate the symptoms are also different.  There is no standard way of performing this surgery, it is really left up to each surgeon’s theories, creativity, and style. And of course our recoveries all look very different in many cases.

My parents are coming tomorrow to help support me and provide some relief for Adri.  I think I can honestly say I have never looked as forward to them coming before as I do now.  I am constantly overwhelmed at the level of support and encouragement I have been receiving from family and friends.  It causes such emotion just thinking about everyone sending thoughts, prayers, get well wishes, and going out of their way to help.  I can’t help but think every time I look at the mantle and dresser overflowing with cards that I don’t deserve this.  It is almost incomprehensible to me.

As I have  stated in previous posts I strongly believe everything happens for a reason.  While I can never fully understand the reasoning behind this trial, I do believe I have learned the lesson I was meant to learn. My priorities have been drastically wrong for a very long time.  I have known this but was never willing to admit it before.  Looking back over the past few weeks at everything I had wanted (and needed) to accomplish, it is just a dramatic illustration of this fact.  I have been stubborn and selfish for a long time.  When I am brutally honest and look at where I have been focusing my time on personal projects I am ashamed.  Focusing on the accomplishments I have had on the projects I have spent the most time on recently, my reaction is raw.  So what?  What does it matter?  That is meaningless.  The things that have true life value and needed my attention were instead left at the bottom of my list of “to-dos” and neglected as always, telling myself there will always be time to get to them later.

So what do we do when we finally come to realize we never gave proper attention to those things that we should have excusing ourselves by saying there will always be time later, and we realize there is no more time?  There is nothing left but regret.  I can understand now in some fashion how somebody can get to the end of their life and regret the decisions they made and the way they spent their time.  Fortunately, I have time to change this and adjust.  While I may have less “good times” to “accomplish” things when you focus on what truly needs your time and attention suddenly there seems no sense of good or bad times or accomplishment.  The truly substantial and meaningful things in life aren’t task oriented.  Will you honestly look back on a time in your life when you made the “right” decision to spend time with your spouse as a bad time because you were in pain and it wasn’t a good day from a recovery sense?  Likely not.  You will cherish those moments more than when you were having a good day but chose to spend your time poorly.  Likewise would you have love your spouse or spend time with your family as an accomplishment on your life resume or a task on your checklist? No, just framing it in that context immediately cheapens the experience and meaning of the moment.

This time in my life has allowed me the most internal reflection and personal evaluation ever.  And has been the biggest test of my faith and my character ever.  It has also brought me to a true understanding of what the phrase “born again” means.  Growing up you hear this phrase tossed around a lot, many times casually and seemingly without meaning.  I always wondered what that meant.  Growing up with faith in a Christian household I always had my doubts because I had never had “the experience” that everybody talks about, something to remember where something snapped and you saw life differently and new everything was going to be different from now on.  I have outwardly done what I was supposed to do, followed the checklist, the whole time wondering when there would be more and if I was missing something because I just couldn’t seem to achieve that close relationship or comfort with God that the “born again” speak of.  Today I understand.  The convergence of several events including these thoughts today has made me understand.

I enjoyed a visit with our pastor Matthew today who briefly explained the scriptural background for anointing for healing.  He then anointed me while saying a prayer for healing.  The portion of this whole experience that stuck out to me was the portion of the prayer where he prayed for the spirit to come on me anew.  That has stuck with me because it made me realize that has been my prayer this whole time.  But I wasn’t doing my part.  I said come on in but these doors are locked, you can’t go in there.  And I know you want me to change these things but I feel really comfortable with the way things are and we can worry about that later.  It doesn’t take long before it is obvious your welcoming words are just that …. words and your actions are really not welcoming at all.

So today with all of the trials I have been through recently, the meaningful moments I have experienced, the introspection, I truly feel I understand these words I could never make sense of before.  I admit my faults and while I know I will never be perfect I am tired of the way things are. I do feel “born again”.  I see things, and feel things, and understand things differently now.  Things that had been there the whole time but I just couldn’t seem to grasp.  And after all of the failures and rawness is stripped away, the only thing left is …. hope.

Soooooo sorry, there is no censoring this.  Last night absolutely sucked!

Some days I feel as if the more I heal, the worse I feel.  I know logically that this is probably due to the fact that I have been trying to scale back on the meds to prepare myself for joining reality again some day soon.  But knowing this doesn’t help.

Last night the headaches came back full force.  And this time even laying down didn’t help.  To make matters worse, I had severe neck and shoulder muscle pain.  I could definitely feel where they cut the muscles in my neck.  We tried pills, heating pads, everything and nothing helped.

It would have been somewhat tolerable, like the headaches, if I had been able to find a position to lay in that was comfortable and could just veg out. But noooo my neck had other plans.  My neck and head worked in cahoots to make every moment miserable.  I could not find any position at all that would ease the pain in my neck yet for whatever reason I felt the need to keep moving and trying to find that magic position that would make everything feel better.  The problem?  Every time I moved even an inch my head exploded.  I mean seriously I almost expected to reach up and discover that my head was no longer attached to my body.

Thankfully we still had some Vicodin remaining from my last prescription and came to the conclusion that this experiment (although doctor prescribed) about using caffeine to try and stop the headaches was a complete failure.  So this lasted a couple of hours until it was time for my next round of pills and we switched back to the Vicodin and kept that going all night.  Thankfully my wife is an amazing person and set her alarm to wake up twice last night to give me doses of the pain meds.

So today I am still not feeling 100% but am feeling much much better.  I still can’t help but think … I am supposed to join real life and go back to work in 9 days? Seriously? If scaling back a little from the narcotics causes full on pain on the 9 – 10 scale rather than just increasing the discomfort, how am I supposed to stop taking these pills in a week.  I suppose I will find out but this whole mess is getting very old and I just feel like it will never end sometimes …

Sooooo this was going to be a very short post but the more I thought about it the longer it got … Sorry!  Random thoughts for today that are flitting through my head.  My ADHD is probably fueling this jumping of my mind all around so good luck keeping up.

1. Medicine Theory
While I would certainly love to be pain free and on heavy narcotics I made the decision recently to scale back.  This was for several reasons if I am being honest.  The foremost reasons is I was scared I wouldn’t be ready to be functional for work in 2 weeks if I hadn’t even tried functioning without drugs.  Another is I wanted to ease back into the game rather than suddenly stopping my all medicine cold turkey.  But honestly … I was also getting sick of this medicine regimine.  It gets old quick.  Imagine taking medicine every 4 hours.  My wife has been so gracious waking up and not complaining because this means we also wake up to take medicines at 2 am and 4 am.

2. Change in Sense of Smell
Today I have become a superhero! Bet you didn’t know! My superhero name is snuffleupagus and my super power is a super enhanced sense of smell.  I declared that I wanted waffles this morning and as I walked into the garage to get to the car I was overwhelmed with the smell of gas.  I mean so bad that it smelled like some arsonist was getting ready to burn down the house. Well it always smells like gas in there because we have two 5 gallon gas containers for the riding lawn mower and one 2 gallon gas container for the weed whacker.  Normally I can smell it but it smells pretty mild.  Today I smelled it so strongly it almost knocked me over.  I thought that was weird but just noted it and moved on.

Then we get to the Cruizers so Adri can gas up the car.  She cracks my window and I was floored. I LOVED riding in the car with the window down smelling the air and feeling the breeze on my skin.  I could not enjoy this moment at all I was simply overwhelmed with the smell of pollen and allergens if that is even possible.

So we leave the Cruizers and go to the Lowe’s Foods in the same parking lot to get syrup for the waffles.  The walk from the car to the store was almost too much.  I felt as if I could smell and was being assaulted by every single granule of pollen or pollutants in the air.

When we finally got back into the car after the shopping trip it was the same thing.  The best way I can describe it is to imagine a hot summer day sitting in a really old car with leather seats.  You get that effect where you are overwhelmed by the odors of old car and leather and feel like the air is being sucked out of your lungs because it is so hot.  That is exactly how I felt when getting in the car even though it wasn’t hot.

3. Surprise!
If I have already blogged this forgive me.  Narcotics, remember?  So just when you think you have a handle on something you realize you don’t.  When we went to the ER last Friday because of my obnoxious headaches, the doctor insisted I had a laminectomy and asked if they told me what vertebrae.  I argued with him a couple of times to no avail because his response was simply “I am reading directly from the surgical report”.  Silly doctor! You have no clue! I know what they did to me better than you!

Apparently not.  When I had my follow up with Dr. Zomorodi and recounted my experience at the ER where I tried to gently explain to the ER doctor that I had not had a laminectomy because my surgeon told me it would not be needed and when I awoke in the ICU and he gave me the report on how the surgery went he didn’t mention that he had done one.  I should have realized when he looked at the PA after I mentioned that.

Later after the stitches were removed Dr. Z invited myself and my wife to his office to show us the CT scan that was taken at the ER and go over with us what he had done.  In some ways it was fascinating because you could see where he had removed the bone and where he had sewn in the patch.  You could also see the fluid pocket (which by the way has completely disappeared and come back fully twice since the appointment … so much for being healed).  Now the doozy was when he zoomed to another view and said “and this is where we removed half of C1 to make some space and allow me to cleanly seal the incision”.  Dang it … I guess now I have to finally admit I did have a laminectomy.  While I am certainly not happy about the added pain I am happy that at least there possibly is an explanation for why I have been having so much more post-op trouble than had been expected.

4. After Care? What after Care?
So I now have come to realize in full force what the chief complain is of almost every Chiarian I have talked to and why these various foundations and organizations exist.  As if it wasn’t bad enough that there is no standard treatment and no consensus on what works (many doctors perform their own version of this surgery which is why it is so important to do your research and make sure you are comfortable with your surgeon, their background and experience, and exactly what is being done to you).  I had taken for granted that everybody I talked to knew what Chiari was and what I had done to me.  Hmmmm must be those handy narcotics making me forget that duh! it is because they were all in my surgeons network or the same practice.  I have now started facing doctors who have never heard of CM / SM and am starting the struggle of learning how to explain this disease and the “treatment” to others when I still feel like I haven’t fully wrapped my own head around it.  I know I had said this many times but I truly can’t understate how hard it is to explain to people why I had head surgery as a remedy for back pain.

And this is one of the biggest problems with this disease to date (besides the fact that the treatment is brutal and has no real guarantees).  There isn’t really any good aftercare and no hope of standard or good aftercare until there is awareness.  After all, how can I expect to go to doctors and follow up and discuss the problems I am having and expect to hold a meaningful conversation and receive an appropriate resolution to my problem if the doctor has never heard of my condition?

5. Exhausted? Who me? Absolutely!
The other thing I am struggling to take positively is the ease at which my good times go bad.  I have not been very athletic or in shape in quite a while now but I still struggle to comprehend how doing such simple things that we all take for granted can cause so much trouble.  Imagine just simply walking to your mailbox and back.  Not even briskly, you are walking very slowly with purpose taking it easy not to hurt yourself.  Seems innocent enough. Until you feel as if you have walked across the entire United States and you suddenly have a headache so bad that combined with the exhaustion you don’t feel back to your pre-walk self until after you have taken a 5 hour nap.  Talk about frustrating!

And so there it is.  I am done ranting for the day.  All I can do at this point is hope that my random rants and ramblings about my experiences into uncharted territories (at least for me) can help someone in the future who finds themself in the same situation as me … not knowing what to do or what the future holds and scared about the immediate future and what is to be done.

Will woke up this morning with the bump, still strong and in full force.  However, as he listened to the music while I was cooking, and then came to write his blog, and then later ate his breakfast, the bump dissipated.  We were chatting at the kitchen table when I looked up and said that the bump was gone.  He reached back and felt the back of his head and could tell that it really was gone.  He prayed for healing, as I’ve been doing daily since before the surgery even occurred, now let’s just pray it stays this way.

We always both turn back to this song from Casting Crowns in times of life’s trials and tribulations, but it is ever so fitting.

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it’s still raining
as the thunder rolls
I barely hear You whisper through the rain,
“I’m with you”
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus:
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

And, we will continue to praise God in this storm, just knowing that he knows the purpose for our pain, our trials, and our lives.  We just pray that we are wise enough to listen when he’s calling, and know that he is always with us.

Yesterday and this morning have probably been the most pain I have been in in my entire life.  I have never experienced a headache and muscle pain like this before.  I guess the honeymoon period is over and I am now experiencing what Dr. Zomorodi has constantly been reminding me is the most painful surgery he does. This morning I awoke to my wife making my favorite breakfast and playing our favorite Christian songs.  I guess I am just an emotional basket case but I find myself pondering each song and bawling my eyes out.  Just reminded by each how I have taken everything for granted and not lived the life I should have and wanted to have lived and how merciful God is that he would take back the least deserving (over and over and over again).  However I know with my stubborn personality this is exactly what I needed to bring me closer to him and there is always time for a fresh start.  No matter how hard this trial is if it brings me close to him and puts me back on the right path I wouldn’t have it any other way.

sleepy mc sleeperton was lurking around the barnhill today, but i woke him up with some tasty vittles and got him set up on his lap top.  the bump has gone down in size today – we got a measurement of 23 1/4, but the headaches persist.  i’ve even developed one myself.  sympathy pains?

we were hoping to get some fun in tonight by going to down town wake forest’s art after hours, but husband’s headache was just too much to risk heading out of the house.  instead i ran out to our latest chinese restaurant and grabbed us some tasty dinner and rented “the invention of lying”.  we love a movie (even if it’s a giant cheese ball) if it has a happy ending, so this was a good distraction from the fact that we’re trapped in the house.

praying for a pain free rest of the weekend!

Husband has been posting all of the juicy details for your reading pleasure, but here I am with the most recent photos.

Other than us constantly monitoring the size of husband’s camel hump, (24 3/4 at the moment) we do not have much going on. Lisa urged me to dedicate the following song to husband today “My Humps” by the BEP.  Husband – this one’s for you.

Bored as we are, we do know the following, the neighbors appear to be completely moved out to the left of us now, and behind us a new house is under construction. Since we are mostly hanging out around the house we’ve got tabs on all of this in/out of the neighborhood.

We hope husband’s new medicine regimen will keep him on the road to pain free recovery.  Tomorrow night we’re planning a little bit of a night out in down town Wake Forest, so we shall see how it goes.

I hope I am not speaking prematurely but today seems to be a great day.  I was treated to a nice seafood dinner at Shuckers last night for which I am very appreciate. Who can resist a nice pile of fried oysters, fried clam strips, fried okra, and coleslaw with a nice cold coke? We then ate some strawberry shortcake when we got home with the cake and fresh stawberries that were provided to use yesterday.

So I woke up this morning fearful that the headache would return since I had changed medicines.  It was very difficult to wake up but up until this point I still have had no headache, vision troubles, dizziness, or nausea today.  I did start to feel a little warm about an hour ago but put the fan on and felt better within 5 minutes.  I am still going to take it easy and not overdo it to make sure I continue to feel good.  Adri also told me earlier today that the incision looks much better even only 15 hours after the stitches were removed.

She has gone to lunch with a coworker and it sounds as if I will benefit.  She is going to bring me back my favorite dish from Macaroni Grill (Penne Rustica) when she returns.

Another miracle happened today.  The neurosurgeon’s PA called me! Imagine that, I didn’t even have to call and pester them.  Things are starting to look up!  It was lucky they called me also because Adri had talked to someone this morning and they told her that they couldn’t call the new prescription into the pharmacy and so they were going to fed-ex it overnight.  I was worried at this point because this is the same thing I was told about my medicines early this weekend and they never did the fed-ex. So luckily he called and I had the opportunity to ask what the name of the new medicine is.  The medicine I mentioned yesterday that has the caffeine with a low dose of narcotic is Fioricet.  I don’t even remember the original reason for his call but when I mentioned my wife had spoken with somebody this morning and that they were going to fed-ex the medicine because they couldn’t call it in he began checking my file and after a minute said I don’t see a note about that.  He said it is difficult with this medicine because it does have a narcotic in it but the dose is low.  So he got the Target pharmacy number from me to check if he was allowed to call it in.  He called me back about 10 minutes later and said he was able to call the medicine in but he wasn’t sure how long it would be before it was filled because they were all at lunch.  As long as I can pick it up today I don’t care how long a lunch break they want to take!

Today was a roller coaster day. I woke up in a pretty positive mood this morning. However, once I got up and moving my headache started to return (though on a very minor scale in comparison to previous headaches). I went back to bed and dozed in and out until around 10:30 when some friends from church arrived and graciously provided us with some food, dessert, and fresh hand-picked strawberries. I sat up and visited with them for a short period noticing I felt groggy but my headache had disappeared.

By the time they left it was time to get ready for a follow-up visit with my neurosurgeon. We actually arrived on time this time! Things became even more positive when the receptionist informed me that I didn’t have to pay the customary $60 copay because all subsequent visits would be lumped under the same umbrella as the hospital and follow-up visits were. Shortly after we sat down we were called back by one of the nurses.

She briefly examined the lump on my head (where the pocket of fluid remains) before declaring that she was surprised I had stitches and not staples, putting some materials on the counter, and informing us she was going to get Dr. Zomorodi’s PA to take a look and remove the stitches.

Dr. Zomorodi’s PA arrived and also played with the lump on my head seeming surprised that it was there. He discussed the symptoms surrounding my headaches and then said he was going to have Dr. Zomorodi come have a look before he removed the stitches.

Dr. Zomorodi arrived and began playing with the lump which he described as a cone. He said that he had only seen this happen once before and it was odd because typically the cone at the top of the stitches dissolves first and the neck gets bigger as the CSF moves and absorbs into the body. My case was the exact opposite with the swelling going down on my neck and remaining constant at the top of my head. We talked for quite a while and he answered many of my questions.  He then said he was going to go take a look at the CT scan and to drop by the office next door after we were done to chat with him.

At this time the PA began removing the stitches.  I had been expecting something horrible given that my skin had started to grow overtop of the stitches.  It wasn’t nearly as bad as I had expected.  I felt some tugging and cutting motions but really only felt a little burning sensation once.  Otherwise no pain or weird feelings as he remoed all of the stitches.  After he was done we headed over to see Dr. Z.  So here goes, let’s see if I can remember all of the details.

So first thing we learned is that I did indeed have a laminectomy. Dr. Z had told me before the surgery he was sure that he wouldn’t have to do a laminectomy based on the MRI but he couldn’t guarantee it if he got in there and saw something different. I just assumed he had not done it since there was no mention of it after I awoke in the ICU and he gave me the report of how the surgery went. However today he went over my CT scan showing me everything that had changed and said he did remove part of the C1 to make things wide enough for the CSF to flow properly and allow him to close and seal the incision.

But back to the headaches. Interestingly enough he thinks that caffeine will help immensely. He asked me if the headache changed or if there was anything I could do to make it better. When I explained that after laying down for 15 – 30 minutes it felt pretty good but anytime I moved, particularly if I sat or stood up, it started throbbing and you could often see my temples pulsing in rhythm with the throbbing. He nodded his head as I was describing this and informed me that it is all related. Apparently when I lay down the spinal fluid pools in one area. Then when I sit or stand up the blood all rushes to my head to try and disperse or relocate the CSF which increases my blood pressure hence the pulsing in my temples. This made sense since I also get a strong head rush if I bend over below the waist such as to pick something up from the floor. He said that he wanted to treat the problem rather than the symptoms so he prescribed me a new medicine to use instead of the Percoset. The new pill has a lower dose of narcotics (he called it a wimpy narcotic) but a high dose of caffeine. Supposedly the caffeine will cause the blood vessels to constrict which will prevent the pounding effect when my blood pressure rises preventing or lessening the headaches. I can’t remember the name of the medicine at this point but will post it once I pick it up. The interesting thing to note is that the brain itself doesn’t feel pain so apparently it compensates by tightening the neck and shoulder muscles which cause pain to notify you that something is wrong.

As far as the cone or pocket of fluid, he didn’t expect it to remain this large but he was relieved that they did him the favor of taking a contrast CT scan because he could verify that it was indeed just fluid and there was no infection present. He showed us on the CT where he had removed the section of bone so that my skull resembled a horseshoe with the bottom portion of the U that connects the left and right sides missing. Where that bone was missing you could very faintly see a dotted line connecting them where the dural patch was sewn in place. Then immediately behind that you could see the bulge or pocket of fluid.

His explanation of the fluid is that when they sew the patch into the dura it causes tiny perforations in the dura caused by the needle during the procedure. Until these perforations are healed the spinal fluid will leak out of the perforations. He also said that the patch and perforations acted as a one way exit allowed the spinal fluid to leak out but not allowing it back in. This explained the pocket of CSF. He said you can tell that the perforations in the dura had healed since the lump was not increasing or decreasing in size (meaning not only was it not letting the fluid back in the skull but was also no longer leaking). The other patient he had seen with this “problem” had the lump for 2 months so with a few people it just takes longer for the CSF to absorb back into the body and disappear. Thankfully he didn’t want to do anything radical such as trying to drain it. He basically said to just wait and watch to see if it goes down and call back in about 5 days to see how I am doing and to especially call if it starts to grow in size. Another option he mentioned is to wrap my head to put pressure on the cone to try and make it disperse or absorb into my body quicker.

After the appointment we went by Target pharmacy to see if the 2 prescriptions had been called in yet.  Ironically enough, they had the 2 prescriptions waiting that Dr. Z’s assistant said she was going to call in.  They tried to convince us that they had been received and filled last night but if so it was done after 5 pm (over 30 minutes after the office had closed).  And another shocker, the 2 that were supposed to come in today from Dr. Z’s office were not there.   Oh well, will take what I can get I suppose.

So long story short, it turned out to be a very informative and exciting day. Just a week ago I was having crippling headaches with no knowledge of what was causing them. I was starting to get scared that I wouldn’t be able to come off the pain medicines. And I was sleeping pretty much around the clock because of the doses of pain medicine I was taking to manage the pain.

Now I have hope for a brighter future. It is an immense relief to know what is causing the headaches so we know how to battle it and know that while this is not normal, it is not serious and there is a light at the end of the tunnel. Also with the new prescriptions I will not have the same side effects in the sense that I won’t be drowsy. I can go back to the normal routine after hospital release of sitting in bed playing around on the laptop trying to get some minor things I had been putting off done. And you can’t even imagine what a relief that is.

So today was another lesson in how a doctor’s support staff can cause the practice to sink or swim.  I have had an “interesting” relationship with Dr. Zomorodi’s assistant.  She has never answered the telephone when I call, has never once returned one of my calls (even though she says on her voicemail she will return my call within 48 business hours), and has always had an excuse when I do reach her for why she hasn’t done what she said she would do.

My wife contacted her yesterday to inform here I would run out of my pain medicine this morning at 10:00 am and she informed us that she could not electrically send the prescription since it was a controlled substance but the she would overnight fed-ex the prescriptions to us so they would be there in the morning to prevent us from having to miss a does.  OK sounds great.

So we wake up this morning and keep checking but by noon and still no sign of the fed-ex we start to panic. Thus begins the series of frantic phone games.  We called Dr. Zomorodi’s assistant several times and a miracle occurred … she answered.  She assured my wife that she would call in 2 prescriptions to the Target pharmacy close to our house.  She said to give her and hour and even confirmed the time she would be sending it.  So at 4:00 pm we call Target to ask if I had any prescriptions called in.  Shockingly enough the answer was NO.  So we start calling back Dr. Zomorodi’s assistant knowing that her office will close in 30 minutes and guess what?  Another shocking response … she didn’t answer. As a backup plan we call my PCP because she offered earlier to be a go-between because supposedly she has a higher success rate of calling the office and getting through to somebody.  Finally at 4:28 our PCP calls and tells us that she has a prescription waiting for us at the front desk.  We scramble over to see her and pick up the prescription thinking she would close soon.  After picking up the prescription we realized she had prescribed just enough to make it to my appointment with the neurosurgeon tomorrow.  Just for kicks we checked if our prescription had been faxed in when we dropped off the prescription from the PCP.  Nothing, nada, no dice.

So we waited the twenty minutes, picked up the prescription, and got some water so I could take my dose on the way home.  Back in business!

so we’ve determined –

the size of the bump is directly proportional to the size of the headache.  will’s fluid filled “bump” on the back of his head was monitored by ct last friday and it was determined that it was just a fluid filled pocket, and nothing to be alarmed about – that it would just go away on its own.

however, it grows and shrinks just according to how it feels every day of the week and every hour of the day.  however, the one thing we are sure of is that the size of the bump correlates to the intensity of the headaches that will suffers from.  unfortunately we do not have the magical morphine at home to help keep these headaches at bay.

fortunately tonight we did know that we needed to attack this thing with pulled curtains, silence, extra flexeril, extra arnica phosphorus, arnica montana, coca-cola, a lavender scented candle, and lots of love.  luckily i think we knocked it out of the park.  hopefully it will stay that way.

large thanks go out to will’s cousin lisa white for our scrumptious dinner this evening.  lisa stopped by tonight with a tasty chicken cheesy casserole, tortilla chips, and red white and blue cookies.  thanks to her for keeping me away from the kitchen, out of the dishes, and husband’s belly full of goodness!  hugs to lisa!  we owe you big!

we found out this morning that we have a follow-up appointment on wednesday at dr. zomorodi’s office at 1pm.  they are going to evaluate the incision, see if stitches can come out, discuss the scarring, and the BUMP!  hopefully we can get will some better pain management, and some answers to the things that have been plaguing us recently.  get this bad boy under control!

apparently i was such a sad sack yesterday i’ve convinced my poor momma to come to town for a few days to help me get things under control.  she’s such a sweet little thing to come and help me, i just feel bad that i am 32 years old and still need her to come bail me out.  however, either way i can’t wait for her to get here.  sometimes when you have all of this pressure on you, you just like to be a little kid, if even just for a moment.