Chiari Entry no. 6, 7, 8

Chiari Diary  No. 6   Sunday, March 08, 2009 

 I have seen Dr. Oldfield and I have a completely new outlook on my situation.  Everything is scheduled.  Despite what Cleveland Clinic said I am going to have the surgery.  I believe that Dr. Oldfield’s opinion is more accurate.  I still have the sleep study scheduled and I am going to do it because UVA wants to know for surgical reasons.  I will be leaving here on March 24th so I can have all the presurgery stuff done on the 25th.  I will then have surgery on the 26th.  They expect me to be out of the hospital in 3-5 days and spend a couple of days in a motel room near the hospital.   After that we will be headed home.  My family and friends have been very supportive and understanding.  Jessi will keep everyone advised of my progress via email, text, phone and this blog.  So check in on the 27th or 28th and see how it went.

Also I would like for everyone to check out Zipperhead Productions.  This is a fellow Chiarian that is setting up concert productions to rasie money for rare medical disease research including Chiari.  He is a great guy.  He is working hard to help us all so let’s support him.  Follow the following link to see what he is up to. 
  
http://profile.myspace.com/index.cfm?fuseaction=user.viewProfile&friendID=433778227

Till then Take care and be safe

 

Chiari Entry No. 7   Wednesday, March 25, 2009 

Hello everyone.  Well it is official,  I will be a Zipperhead by 4:00 pm tommorrow.  Dr. Oldfield and his staff have been excellent.  They have been informative, supportive, and compassionate all roled into one.  I won’t lie, I am not looking forward to this.  However I am looking forward to feeling better in the future.  They will be starting the procedure around 10:30 am and should be out and in NICU around 5:00 pm.  So check back tommorrow night for an update.  Till then take care, be safe and may your pain be at least manageable.   Chiari Entry No. 8  Saturday, March 28, 2009    Hello.  I am two days post op.  My balance is much improved.  I have the fuzzy headed feeling from pain meds and muscle relaxers.  Almost no tingling or numbness in hands and face.  I have had only one migraine since the procedure and they got it broke with pain meds.  I am very stiff and sore from surgery and still on pain meds, muscle relaxers and antiinflammatory and such for that.  That is all for now.  TTYL

Chiari Entry No. 5

Chiari Entry No. 5  Feb. 17th, 2008

Hello again.  It is Feb. 17^th (Tristan’s Birthday).  I have visited the Cleveland Clinic and I am kind of confused.  Dr. Luciano seems to want to attribute all of my symptoms to sleep deprivation.  He thinks that I may have sleep apnea.  If I have Central sleep apnea then it is Chiari related.  However if my sleep habits are not related to sleep apnea then what is it? They do not want to do surgery as of yet but want me to do a 6 month follow up MRI and sleep studies in between.  I have been taking the Imipramine now for a month.  My sleep habits have improved from this but I still have the other symptoms.  I guess the headache is a little better too.  I am supplementing with narcotics for pain only when needed.  The question is this.  Is the imipramine only helping me sleep or is it doing it’s job by acting on the pain receptors and such?  What to do now?

University of Virginia wants to see me for surgical consultation on Feb. 25^th.  They actually express a desire to do surgery.  I know that Dr. Oldfield is a leader in the Chiari field but there is the opinion of Dr. Luciano at Cleveland to consider. 

 What I know:  This may/probably get worse.  Worse means; more and worse headaches, more balance issues, swallowing problems, speech effected and I will eventually develop a syrnx (which sucks).  The syrnx will not just go away and the only real treatment for it is decompression surgery.  Sometimes this all stabilizes out and does not get worse other than the syrnx.

Options:  Continue the way I am and see what happens with the sleep study.  Search for other treatment options such as medications.  Suck it up and do the surgery with the chance of no change or worsening post surgery.

Right now I am going to listen to Dr. Oldfield’s suggestions and ask a lot of questions.  Then I will revisit this page.  So off to bed with me.

The Day Before Surgery

Part 2

 The day before surgery was odd for me.  We arrived at Dr. Oldfield’s office for pre-testing and  the final consult.  I was filled with trepidation.  I told my wife in the parking lot that we could always not do it and just have a nice little vacation here in Virginia.  It would be fun.  We could visit the local sites like Monticello and spend time in the pool and relax.  We could then offer our friends and family some made up story about how the Dr. was sick and couldn’t do it and that we waited for him to get better and reschedule but he never got better.  She didn’t think it was funny nor did she like the idea.

 Dr. Oldfield was late that morning due to some traffic tie up and we spoke with his Nurse Practitioner, Becky Hand, about some things for about 30 minutes.  When he arrived he was once again very personable and understanding.  We didn’t’ tell him about our discussion in the car about skipping out though. LOL.  He pulled up the MRI again and explained  what he expected to do and talked about the risks and complications that could arise.  CSF leaks were the biggest concern, of course, along with infection.  Doc didn’t expect to take too much skull nor more than the back half of CI and wasn’t sure if a dura patch was going to be necessary.  He uses a piece of the patient’s tissue for the patch.  He said they would prep an area for the patch just in case.  We then went to Becky’s office.  She was great.  She is funny and down to Earth and has a way of making things real.  We signed the consent forms and headed to the lab and then to the hospital for pre-admission paperwork.  They already had everything done through my insurance we just had to sign some more papers there also.

 We were done in the matter of about 3 hours total and headed for some lunch.  Still, I was in a daze.  It didn’t feel real yet no matter how much we had done and discussed with the doc and Becky.  I mean it was very real talking to Becky, but it was like I was watching it happen from someone else’s eyes and not my own.  Yes, I was scared, nervous, awkward feeling.  Trepiditious!!!!  I didn’t want to do this.  I knew that I needed it or else I was going to get worse.  A syrnx would form and the sleep apnea would worsen along with everything else.  All of my symptoms could and would most likely become permanent without surgery.  I didn’t’ want that either.  I wanted my life back and that is that.  END OF STORY.  But there is always that chance that surgery won’t relieve the symptoms.  I had read about it so many times.

 My wife was terrific.  She worked so hard to make me feel comfortable in my own skin that day.  She joked and flirted with me like we were newly weds; she comforted, consoled and generally babied me all at once.  Wow, I want that part all over again.  My best friend Dave came in that evening and we all sat down and had a drink and talked about old times.  I forget to mention that my Mother-In-Law went with us to support my wife also.  She has taken me in like I was a long lost son.  She treats me with respect and caring.  I couldn’t ask more of a nicer lady.  It was a good evening.  They did a great job of getting my mind off the coming morning.

 We all met at the hospital that morning and waited patiently for my turn.  Next up on the chopping block, Kyle’s brain.  It felt like forever that morning.  That feeling of not being me was gone though.  It was all real and it was going to happen.  When they gave me the sedative and wheeled me out and away from my family after I said my “see ya later’s and I love you’s” I was asking the Anesthetic if they would take pictures and that I wanted copies.  I don’t really remember doing that though.  Oh well!

 More about this coming later.  Thanks for reading.

My Surgical Journey

Part 1.

Well I guess I should start with why I had surgery.  My sympttoms started in August of 2008.  It started with the headache that just wouldn’t go away no matter what I did.   My wife was taking care of her father who had small cell lung cancer.  She had been running him to doctors and for chemo and doing general care now for almost 7 months.  Her Mother and her were working themselves ragged taking care of him and my wife’s Grandmother that has Alzhiemers.  Meanwhile I was working my 24 hour shifts as a paramedic and watching our three kids when not at work and doing what I could at my Volunteer Fire Department where I am an officer.   It was stressful to say the least.   I didn’t want to tell Jessi because she had enough going on as it was.

First thing I did was call my PCP, diagnosis was stress headaches.  sounded plausible to me.  So I began with minor pain relievers and muscle relaxers.  This helped but it didn’t actually take away the constant nagging pain in the back of my head.  So then I tried my Chiropractor.  Wow.  that was an experience in itself.  The crack of my neck as he adjusted me and instant relief for about an hour.  Then it came back with a vengence.  I only did this twice.  Well it was that time of year to get my eyes checked and contacts changed.  So I went to my eye doctor.  My contact lens script had changed just a bit so I took care of that.  All of this took about 6 weeks to do.

Needless to say none of it actually worked.  I got some relief on occasion but the headache was always there.  I finally told my wife what was going on at that point.  I couldn’t hide it anymore.  Her father passed during this time and she went back to work a couple of weeks later.  By this time it was late September and I noticed that I was stammering on some words, and my hand eye coordination was going to hell in a handbasket and I was developing insomnia.  As a medic I need hand to eye in a bad way as well as sleep.

Jessi insisted that I go to the ER around the last of September.  She just knew that something bad was wrong.  I wrote it off as lack of sleep and stress.  I’m a medic, I know what I am talking about.  Well at least I thought that I did.  The ER trip was pretty inconclusive.  CT scan was negative, blood work was clear and X-rays were normal.  Nothing out of the ordinary.  Diagnosis insomnia combined with tension headaches.  So once again I was told to continue the pain relievers and muscle relaxers.  They also referred me to a local Neurologist.

It took me a two weeks or so to actually make the appointment and go.  I’m a medic, right.  I know what I’m doing.  I don’t need no stinking head doc to see me and run up more bills, I just needed a vacation.  WRONG!!!!!!!

So this local head doctor tells me my brain is too big for my head after an MRI and starts talking about Chiari and what it might take to make things better.  By this time it was mid November and I was worried but not scared yet.  I wasn’t bad in his opinion and we could work with this to get me to feeling better without surgery. So we tried some anti seizure meds and stronger pain relievers.   Boy was he wrong about getting better.

In the course of 2 months I developed balance issues,  more coordination problems,  numbness in left hand and left side of face,  confusion,  more speech problems and more sleep problems (that turned out to be sleep apnea).  It was January of 2009 and I was falling apart rapidly and my head hurt worse than ever.  Not too mention none of the medications were helping anything.  So I agreed to look into surgery, and that is that.  I was scared at this point.

Part 2 comiong soon beginning with the day before surgery.

Continuation of Our Search For a Neuro

Part 2.

Our next trip was to the Cleveland Clinic.  What a great hospital.  We entered the front doors and was greeted by very friendly gust services folks that got us going in the right direction to find the office.  Also valet parking was terrific and free.  The facility is huge to say the least.

Once we got to the office and signed in we were brought back to an exam room in just minutes.  The nurse took our films and did a quick intake interview and said the doc would be with us in about trhirty minutes because he needed to review my films.  Sure enough thirty minutes and here he was.  Well it was actually his associate but it was still timely.

The Associate neuro told us that the films appeared to show CSF blockage in the Anterior portion and that surgery was warranted in his opinion.  He spent around 45 minutes with us explaining things and doing a full neuro exam.  He was very kind and personable and seemed to be very knowledgeable.  We were excited to have met him.  He then told us that the main doc would be with us shortly and that he was going to talk to him about the exam and stuff and that he would be in in a minute.

We were impressed that someone had actually sat down and listened and even explained some things.  Then all of a sudden this guy in a white shirt and white pants opens the door and notices that I am looking at the painting on the wall.  He comments on the painting and just starts a nice general conversation.  I thought he was the custodian and was just being friendly as he was checking rooms to be set right.  No.  He was the Doctor as it turns out.  He didn’t look like any doc and present himself like any doc that I had ever met.

He tells us that my flow is partially blocked in the posterior and that yes he spoke to his colleague and he was wrong.  OK.  He then starts questioning us about my sleep habits.  Yes it appeared that I had some sleep apnea by the sound of it.  So he says let’s get a sleep study and fix that first.  Then we ask him about Chiari Causing sleep apnea and he says “yes but I think that your whole problem is lack of sleep, not Chiari”.  Once again I say OK.  I mean what else could I say.  I have just been told by one doc that surgery is warranted and flow is blocked in the anterior and now by another doc that it is only partial in the anterior not the posterior and sleep is my problem.

I explained to him that the sleep thing just recently started and that the other symptoms started months previously.  Couldn’t it all be caused by Chiari since the sleep problems were new compared to the other problems?  He replied that yes it could be but he wanted me to come back in six months for new MRIs taken with position changes and have the sleep study done before that.  Then he would review my case again and we could make some decisions.

This man wanted me to live like this another six months.  I was barely making it through the day much less my life.  We asked him again if he was sure and what about this and that and he said that these things didn’t prove anything yet.  He then got up and meandered out the door with the same hey how ya doin attitude as if he were the custodian again and left.

I was very puzzled by all of this and was even a little lost.  My wife and I wandered down to the lobby with our sleep study orders and a schedule for a six month MRI and appointment like we were lost.  Two totally different opinions and no real answer.  Six more months like this?  What?  Who?  Where?  How?  Why?  WTF?

The ride home, once again a four hour trip, was filled with our speculations.  We wondered if the diagnosis of Chiari was real from back home at this point.  But we had the MRIs that we had looked at and compared to other Chiari MRIs online.  It was there!  I had multiple sypmtoms!  It all matched up!  Or so we  and our medical neruo back home thought.  Wait till I told him this one.  He flipped over how Pittsburgh had treated us, and now this B.S.!

We really felt lost and down trodden after this trip.  But we scheduled the sleep study and left it at that till we found Dr. Edward Oldfield online at University of Virginia.  He would be our last hope of a real opinion and some real answers.  So we mailed him everything that we had and waited.

Note: Cleveland Clinic now refers all Chiari cases to a different Neurosurgeon that is with them now.  I have heard that he is very good and caring.  He is not the same Neurosurgeon that we saw there.  Dr. Di is listed on this blog on the Chiari Specialists page.

More later on our trip to Virginia