Surgery Has Been Scheduled!

So my surgery has been scheduled for Tuesday January 3 at 7:00 (I have to be there at 6). There is nothing like have your surgeon well rested from Christmas break!! :) It will take about 3 hours from the time they wheel me back until I'm in recovery.  About an hour of that is prep - you know knocking me out, positioning, and since I will have a chest tube for breathing (uh those of you who know me know they better have me asleep before they put that in me, cause that scares me more than cutting into my skull).  I won't be in ICU, but will be on the neuro floor at University Hospital.  I was told I could be released late in the afternoon the next day or the following day (this is all very good, b/c I had read 2 days in ICU and up to 5 in the hospital).  I would prefer to recover at home.  And they send you home with good drugs!! :)  Apparently, from I've read I won't have much of a memory of the first day, so I will be giving my family instructions to take pictures and tell me what happened.

The recovery at home will be about 4-6 weeks.  The first 2 weeks will be a 5 lb weight restriction, the following two weeks will be 20 lb weight restriction and then weight restrictions lifted.  No really a problem, except for two pint sized boys that want mommy to pick them up.  So there will be some adjustments there.

My principal knows and she has been great.  I was so worried about my students and she told me we didn't have to be specific.  This is exactly what I needed to hear.  It's not that I don't want to talk about it, but how do you tell 10 and 11 year olds your teacher is having brain surgery, but she'll be fine - oh and Happy Holidays.  I just can't do that.  So it has been decided that we aren't revealing the details.  When I return - I will gladly go into the details, because they will see I'm okay.  I sent out a letter to my Hopewell family today - it of course had some humor in it, because I can't be somber about this.  I don't feel badly about this.  I've accept this is what needs to happen and I'm happy that I can hopefully have some relief.  I'm blessed to work with a number of caring people!  It really is a family.  I've already had some people reply with jokes which I love and of course people have sent their well wishes and prayers to which I love to.  I also discovered a friend of mine and I like some of the same artists, because she left an Ansel Adams postcard with some beautiful sentiments on my chair today.  How can I be upset when I feel so loved?  I just can't!

If you want to see diagrams of the surgery you can check out the website of my neurosurgeon: http://www.mayfieldchiaricenter.com/ (under surgery, overview - I have type I)

Well - I'm symptomatic enough...

This appointment was just so different.  The Dr. just came in - I didn't see the nurse until later.  He appreciated my data (graphs, symptom lists, and charts).  He had read notes from the neurologist and knew my meds, reviewed my scans, and said go to our site look at the hope stories - contact some of the patients.  Then contact us - then he said let me be clear here - you need to make this decision - we find that a patient who needs surgery and is ready to have surgery has a better outcome.  I asked what he would do in my shoes - he said gather as much information as possible (clearly he doesn't know that I've been doing that since I found out that the word Chiari existed).  So yes I signed the consent form before I left. 

I'm thinking, but need to discuss this with my better half (so yes, just thinking) after Christmas at the end of Christmas break.  Gives me enough time to figure out how to tell my students, find a sub, get outline plans, and prep my children, and myself.  I don't know why I'm handling this well right now, but I am.  I can talk about it without being emotional - it's strange.  I keep waiting for the other shoe to fall (and it probably will the closer I get to the surgery when it is scheduled)

So my Dr. had a Conquer Chiari wristband and I asked where I could get one - he gave me his.  The nurse came in later - she asked if I had done the walk (that is a goal for next year) - I said no and she said you have wristband and I said the Dr. gave it to me.  Like I said a very different visit - he was nice and he smiled. 

So I will become a member of an elite club know as the zipper heads.  Humor is a great way to get through this.  Oh and please don't feel bad for me - I look at it this way - I have hope that I will have some relief and we are talking a 4-6 week recovery period I mean really in the grand scheme of things that is not a long time. - right? 

So you are now updated and I will keep you posted.  I just read about a 22 year old having this surgery next week she will be in the hospital not only on Thanksgiving but on her 23 b-day (please say a prayer ) -  and a 13 year old is having the same procedure.  See I don't have it bad at all. 

If you are curious you can check out : http://www.mayfieldchiaricenter.com/chiari_surgery.php for details

3 Month (and a week) check in tomorrow

So I meet with my neurosurgeon tomorrow.  I've done what he asked: become more active, lost weight, and kept track of my symptoms more closely.  I really don't know what to expect tomorrow - I mean I know he could say let's keep monitoring your symptoms (because they still aren't severe enough) or of course he could say it's time - nothing is getting better.  I think for me - I just can't imagine the next 40 - 45 years of this daily pain, because nothing I've tried has given me a 24 hour period of relief.  So I think I would consent to the surgery, but I know that with the surgery there is no guarantee.  So I'm uncertain and uneasy of course - I mean it is my brain and I'm kinda attached to it - although I would definitely say it has started a revolution against me! LOL :)

I think what I really want is what I used to be like and feel like.  I think I'm mourning for what I used to have.  I really try not to dwell on it, because there is a reason that I have this and I really have accepted it, but some days I think about a day with no pain. 

At school, since my students don't know - when I lose my train of thought or when I totally forget something (or when I confirm a time for a conference for a parent that isn't the right time - twice) - I wish they could understand that this isn't the real me - my brain sometimes well has a mind of it's own.  But I guess what I've learned from this is to slow down (especially from the conference fiasco) - double and triple check things.  Oh brother and this year I have a Caleigh, Kaylee, Kylee, Caitlin in one class- well I'll just say it is tripping me up left and right and I don't want the poor girls to take it personally - which of course they do.  I call students by older siblings names more than usual - all of this concentration stuff is really bothering me.  Mostly, because I don't want my students to think it's because I don't know who they are - if that makes sense.  I'm trying to just take the slow it down approach and concentrate to make sure I get it right, but it doesn't always work.  Oh well, all I can do is try. 


I will provide an update. 

Update and a my intution was right

So I know that I haven't blogged in awhile, mostly because not much has changed.  I still have pain, headaches, nausea, vertigo, and dizzy spells.  I have noticed that I'm more tired than I used to be, but who knows that could just be life - you know.  I do have a new development, which I've contacted my neurosurgeon about and he doesn't think it is a symptom.  However, since they just opened a Chairi center here in Cincy - it's been noted and they are going to see if other patients have this very exciting symptom.  So, since it isn't likely a symptom of Chiari - I will be seeing a specialist on Tuesday.  Quite frankly, it could be stress, but I definitely need to see a specialist b/c I need this symptom corrected.  Anyway, some days and weeks are better than others - I notice that I'm way forgetful and confused more often than I every have been.  I'm pretty sure some of my students think I'm mental - OH Wait I kinda am - LOL!!!  I want to apologize to my family, friends, and colleagues for being a bit dazed and confused some days. Please forgive me - it is either stress or Chiari!! I see the neurosurgeon in another month - actually on my husband's b-day -we'll see what he has to say.  I'll update if there is any change.  Well, there has been one change - I have become more active and although it hasn't really helped with the pain - I'm down 10 pounds! Yea-go me!! :)

So, my other reason for writing tonight.  I finally caught up on some of my shows that are DVR'd.  I found this new show that is a cross between Ghost Whisper (in a vague sense) and Eli Stone - shows possibly long forgotten by people, but two shows that I really enjoyed.  The show is The Gifted Man - on CBS on Fridays at 8:00.  So anyway, the premise is a brain surgeon is visited by his deceased ex-wife, who bugs him to have a conscience and help finish her work.  If you want to know anymore than that you will have to tune in... So I had a feeling that a show about a brain surgeon may just have a case about Chiari - and I was right.  It was the fourth episode on the show - quick diagnosis - child unconscious - need brain surgery that night - you know a rare critical case - but it was Chiari - and yes I saw part of the surgery that I may one day need to have.  I don't know it sort of legitamizes my condition - I know that is strange, but I guess I feel like there are other people out there like me and Hollywood cared enough to write it into one of their scripts.

The visit to Dr. T.

      Well there was some waiting and waiting.  But we finally went in the exam room - you know they actually had two tuning forks in the room - I thought that was cool.  Deb took my vitals and told us that Nancy, the nurse would be next followed by Dr. T and possibly a resident.  I saw diagrams of the brain as well as a model of the brain and the upper and lower spine.
    
      The nurse comes in and I have to rehash everything, then yes folks I get to rehash it all again when the Dr. comes in.  Rehashing things that started in May, when I didn't realize that I would need to remember in August, is becoming harder.  "No I wasn't in an accident, on a roller coaster, didn't fall down, or anything that stands out as different the days before my headaches started.  Now, I'm not saying that one of my two younger ones couldn't have done something - but if they did it wasn't different than any other day with them." I explain.
       So I now know that my symptoms are related to the Chiari Malformation that I have, which is a question that I had.  And I won't keep you in suspense - no surgery right now - we are going to observe my symptoms for 3 months and I will become more active with the hope that my symptoms may subside. 

     My husband and I walked away with conflicting information: my neurologist says migraines and a preventive at the right level will help, the neurosurgeon says pretty much I may have no relief from headaches no matter what I do or what medication I take.    My breathing, balance, swallowing, gag reflex are all intact - telling Dr. T that despite my very unpleasant constant pain in my head I am on the mild side of Chiari symptoms.  Like I said earlier I didn't know if I was symptomatic enough. So no surgery. 

    The nurse told us that most patients they see have been through years of misdiagnosis and many doctors by the time they are seen at their office and they have suffered for many years.  So I feel blessed to have a diagnosis so quickly, but I'm not going to lie - I don't want to go for the next three months with daily pain. Ugghhh... I want to wake up one day without this pain, so hopefully exercise will help. 

So for now I document my daily pain in painstacking detail, wait, and hope. :)

The phone call...

Today the phone call I've been waiting for came around 3:15 (after my class).  I picked up the phone and the nice female on the other line said this is Mayfield Clinic, uh Dr. T. would like to see you.  Information about where is his office is and the soonest appointment was - August 8 at 3:00 or 3:30, but you need to be here 30 minutes early for paperwork.  I told her 3:00 was fine.  I noticed my hands were a little shaky when I hung up the phone and I was/am a bit nervous.  I mean on the one hand I can't wait to see the inside of my head in 3D form, but he is a neurosurgeon so I'm not sure what to expect.  I think he will discuss his findings from my latest MRI and I hope give a cool picture (again the scientist in me - I want to show my students), but I don't know what the rest of the appointment will entail.  I mean if he says my symptoms are related to my Chiari Malformation then I know in the next breath it will be either your symptoms aren't severe enough to warrant surgery or your symptoms indicate you need surgery.  I if it is my Chiari I'm nervous no matter what he says, because then I'm symptomatic and as I've told you before I know at some point (be it sooner or later) they are going to open my head and cut part of my skull out to allow my brain more room.  So I will wait 2 weeks wondering and anxious about the appointment. 

What will I do in the mean time:
1.  Do my paper for my class the rough draft and the final copy - not looking forward to this! :(
2.  Take the girls to Ohio State U for their college visit. 
3.  Catch a Red's game with Mike and Emily
4.  Inform my boss about my upcoming appointment
3.  Set up my classroom and get working on my beginning of the year plans

I look at it this way - if I hear your symptoms aren't related to Chiari or they don't warrant surgery then I get a relaxing few weeks before school starts and I'm good with that.  I really feel like the I have no control over what Dr. T. is going to say, but I do have control over my classroom.  Those of you who are reading this probably already could have predicted that is what I would do. 

I feel like we are getting somewhere in the journey to figure out what exactly is wrong with Carrie's head. :)

Second Time was a charm

So yesterday with my trusty drive (AKA hubby fabulouso) at the wheel and one pill in my tummy, we approached West Image.  They were ready for me as soon as I got there, so to make sure I didn't have a repeat performance from the day before, I took pill number 2.   I was feeling pretty relaxed and they allowed me a cool damp washcloth, this worked for me.  They were able to put the cushions next to my head to make sure it didn't move, which they hadn't been able to do the day prior.  I thought about happy things like my weightless flight adventure, seeing a shuttle on the launch pad, seeing dolphins and sea turtles playing in the ocean, my kids, and places in London with my hubby, but I can honestly say I couldn't stay in those places.  Maybe I was curious about all the different noises and vibrations going on around me, but I made it through!!  With the MRI they monitored my pulse and I was told that they day before it was a strong pulse - I commented I bet it was.  It took 15 min to make the CD for me to take b/c of all the images.  I can't wait to see what my head in 3D form on an MRI - I make ask for a pix to show my students.  So now I wait, my information is in the trusty hands of Dr. T.  Cross you fingers and say a prayer that things progress quickly. :)

Second Time is a Charm (or at least I'm hoping that is the case)

So I was all prepared for my MRI today, but it was different than other the other MRI and the MRA that I had.  They can't put a wet cloth over my face and they need to put cushions on the side of my head - well I will say that I tried.  I really really tried.  I was through the second or third scan and I felt the body temperature rising and we had to stop.  They told me this happens frequently and suggested sedation.  So I called Dr. T to phone in a prescription which they gladly did.  So tomorrow my hubby is driving to the MRI (w/ sedation you need a driver) and he can pump me up for this.  I swear I don't know what happened - one minute I was saying I'm doing it and the next minute I needed to get out. 

I talked to my mother-in-law today who experienced the same thing with her MRI and needed sedation, so apparently they weren't lying when they said it happens to other people. 

I discovered that I will have a 3D image of my brain, which I'm excited to see (you know the scientist in me).  I think that will be really cool, but I think somewhere underneath all of my anxiety is the thought we will have a clear picture of what is going on and where on one hand I want to know on the other hand I know that if this is Chiari ruling my world right now it is very possible that the next step (or a step at some point in time) will be surgery.  And I can't lie that is scary as hell - I mean how do you explain to your 2 yr old and your nearly 4 yr old mommy can't hold you b/c she has had brain surgery (and the recovery time can be lengthy- ughh).  Back on track - I really do need to know and whatever is supposed to happen will happen. 

I will let you know how tomorrow goes - tomorrow I will have Valium in my system so I should be feeling pretty good! LOL :)

Alas We Are Moving Forward

Two weeks ago I registered with Dr. T's office, and I was told in 3 -5 business days I would hear something.  Well, on the 6th business day I called and I was told that a nurse was checking with the Dr. for exact angles needed for a second MRI, but I didn't hear from the nurse.  So I called and she said he was back in surgery (ok that's fine he needs to worry about the person in surgery not me and I let it go) - that was last Thursday.  On Monday, I called and was told that the nurse would call but she is off on Mondays - ok fine.  See with time on my hands, wanting answers, and being me - I was impatient.  On Tuesday at 3:45ish,(after my husband urged me) I spoke with the nurse she told me I was on her list of people to call.  Anyway, she called to upto set up the appointment.  I got the call... my appointment is Thursday 7/14 at 11:00 at West Image.

Curiosity and wanting to know where I'm going I googled West Image ( http://www.westimagemri.com/).  I read about it and found out some interesting things...
1.  Providing Greater Cincinnati with the finest most up- to- date MRI scans available
2.  These high quality images provide your doctor or surgeon the necessary information for an exact diagnosis, or when an operation is called for, the exact surgerical point for a successful outcome.
3.  Made by GE
4.  Fast
5.  They have larger openings shorter bore.  Well lit, vented design makes patients more comfortable.  When you're claustrophobic - fast and bigger are good things to me. 

I feel like we are moving forward and attempting to answer what exactly is wrong with Carrie's head?  :)

And the Journey Begins...

First off let me explain why I have created this blog.  HEADACHES - that started at the beginning of May and to date have not gone away.  I first wrote it off as the end of the school year stress, then I thought the dust from cleaning my classroom, then I thought it was the weather.  After three weeks of daily headaches, nausea, lightheadness, and the threat from my loving hubby that he was personally going to take me to the dr - I relented and made an appointment. By the time I see the dr I now can add vertigo to my list of symptoms.  I decided to switch general practioners and this would be the first time I would see my new dr. - Dr. B.  Imagine that visit hello I'm Carrie Murray and I've had constant headaches for almost a month. 

Anyway, as I firmly believe everything happens for a reason - she is concerned.  I realize this might be something she would be interested in - I had an MRI in January when my youngest son gave me a mild concussion that a week later I was still having pain from - that turned out to be a major sinus infection that I didn't even know I had.  She had the ability to pulll up my MRI report and she gave me a copy of it - THANK GOODNESS.  She notices that it states a mild form of Chiari Malformation, (to sum it up it basically means that my brain is a size 10, but my skull is a size 9 and sometimes that becomes problematic) but nothing to worry about unless headaches in the occipatal lobe continue, and to answer that question yes they were usually in the occipatal lobe.  She referred me to a neurologist.  She gave me some pointers and things to try until I could see the neurologist. 

I see Dr. S. on June 15 with my hubby by my side we wait.  Dr. S.  confirms that I have Chiari (mild) nothing to worry about and you don't need surgery.  I think you have migraines.  You can add to the list of symptoms an very intense pain that goes down my left arm, some chest pain, more episodes on lightheadness and almost nighly episodes of vertigo.  He explains that if you keep taking medicine once you have a headache it actually creates more headaches.  So he wanted to try a prevenative medicine (Nortriptiline) and he did wanted to rule out an aneurysm so I had an MRA (shows blood flow).  The MRA was normal and to date the Nortriptiline hasn't helped.  My husband felt lukewarm about Dr. S. - he felt that he didn't listen to my symptoms, but rather had decided what it was before meeting me.  Again everything happens for a reason, I was carpooling with VM to the science camp that we both teach at and she has classic migraines that she sees a neurologist for.  She called her neurologist and explained the situation her neurologist said she would review my MRI, my MRA, and my symptoms to see if she agreed with Dr. S.'s assessment.  Well, her office called later that week and wanted me to come in to meet Dr. M.  

One comment on the MRI report (from January) was see your eye doctor.  That was summarized for me by my former doctor as I think the MRI picked up on your lens implants. So I saw my opthamologist Dr. Bib, who I have known for 10 years now.  After 30 minutes to provide the recent history, Dr. Bib comes breezes in and I can tell she has not read my most recent history.  So I presented to challenges for her to make sure that A and/or B from the MRI weren't causing my headaches.  3 hours later she had concluded that I had a clean bill of health as far as my eyes are concerned. 

Again my hubby came with me to meet and visit Dr. M, which we knew would be a 2 hr visit.   Dr. M. graciously came in when she was on vacation to meet me.  This visit was already different - she introduced herself and said she wanted to review my history so she had straight in her head.  She took notes and recorded what I said - she asked question after question.  She says I agree that I think you have some migraine issues, but I want you to see a neurolosurgeon.  She doesn't think I need surgery, but she wants a neurosurgeon to make that call, since I have symptoms unrelated to migraines.  She said she can explain the vertigo and lightheadedness as sinus' and she can explain the pain in my arm as a slipped disk (but doesn't really think that is it).  I left with a plan in place - don't live in pain (but again you can't take pain relievers everyday - we'll say 4 times a week), up the Nortriptiline 10mg every week until you see the neurosurgeon, protect your nervous system (b/c you didn't something to piss it off), see a neurosurgeon and she gave me the names of 4 doctors at the Mayfield Brain and Spine Clinic here in Cincy.  My husband and I left feeling like I had been listened to, there was a plan in place, and I was hopeful.  I have found my neurologist! 

So being the good patient that I am, I do an internet search of the doctors who were recommended to me.  I find one doc who has Chiari listed as an expertise - so now I have found the neurosurgeon I will see.  I call the Mayfield clinic spend 20 minutes recapped my symptoms and she says we need copies of the MRI, MRA, and the CAT scan so Dr. T. can review them and we set up an appointment.  Thankfully the little ones were at the babysitter so I take off get my CAT scan results and set off the office in Clifton.  I arrive and dutifully give them everything they need including a list of symptoms that I provided Dr. M.  So now I am waiting to hear from the clinic.  I expect that next week I will hear from them.

When I searched for people with Chiari and/or Chiari sites I found that I have some of the symptoms (some I have had for years, but thought they were 'normal' symptoms that everyone has) but not all of the symptoms.  It is frustrating because the only question I want an answer to is: Is my Chiari symptomatic at this point?  I know it wasn't in January, but is it now.  I am hopeful that Dr. T. will provide that answer to me. 

I guess to have some amount of control over the situation I have researched Chiari sites:
Mayo Clinic Definition
Chiari & Syringomyelia Foundation
American Syringomyelia & Chiari Alliance Project

I have learned about what it means to have Chiari and I have accepted that at some point if I am symptomatic I will require brain surgery.  Again with that everything happens for a reason thing, I came across a blog titled I'm having brain surgery what's your excuse - I was intrigued and didn't know what kind of brain surgery this person had.  I eventually came to the sentence that answered that question for me - Chiari.  I'm an information junkie and can handle almost anything if I can prepare for it - so here it is a woman a little younger than me that has recently gone through what one day I may have to go through.  I am the first to admit - I was tore up after reading some of her blogs, because it isn't a bed of roses - you don't feel 100% better even 3 months after surgery, BUT (here it is the silver lining) she wrote a great deal about her new normal.  And as scary as it may be someday I may have to have a new normal.  I can tell you this I don't want to live like this forever and I will keep searching for the answer to What is wrong with Carrie's head?

Symptoms to date:
Daily headache (usually in the back of the head or the left side of my head, but can be in the temples or on top of my head too)
Pain in the back of my neck on the left side
Bouts of nausea (no matter the how severe or mild the headache)
Frequent bouts of lightheadeness
Almost nightly episodes of vertigo
Pain in my left arm
Hurts more when I look up
A lump in my throat that sometimes makes it hard to swallow
Times where it is  very difficult to verbalize my thoughts

Here is what I'm doing:
keeping a daily headache diary including symptoms for the day
organizing my increasing amount of information (into a binder of course)
learning to accept that I have this and if I'm symptomatic that this becomes a part of me (but I swear I won't let it define me)
seeing what I can do to understand Chiari
seeing a neurosurgeon
trying to enjoy things more...