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. 17th (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. 25th.  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.

Chiari Entry No. 4

Chiaria Entry  No. 4: December 31, 2008

Well it is Dec. 31, 2008 and I have agreed with Jessi to get the ball rolling toward surgery.  She has been very stressed with everything going on with me lately.  I now have nausea every time that I eat.  Not enough to send me to the bathroom to vomit but enough to be uncomfortable and aggravated with it.

I have elected not to run Fire calls at the station unless I can do so without being in an operatational role.   I feel that my balance is too bad to allow me to be in operational situations.  I am afraid of falling or having a problem and getting hurt or worse, getting one of my peers hurt.  My chief doesn’t want me to take medical leave.  He wants me to stay involved in other ways.  I can do that.  It actually means a lot to me to be around the gang.

I did however get my Christmas wish.  Christmas Eve and Day were pain free with minimal other problems. I was able to enjoy the kids opening presents and the rest of the family getting together.  It was a terrific Christmas.  Jimmy got the kids all Nerf guns that shoot the soft bullets.  The adults had as much fun with them as the kids.  Maggie got here cell phone which was classic.   She opened everything and no phone then we called her phone and had here find it and answer.. When she answered I told here Merry Christmas and to thank her Nanny.  The look on her face was the best.  Jessi got me an audio book because reading for long periods causes problems.  She also got me a titanium wedding band because I have bent and broken my gold one at work.  It is perfect for me. She also got me a St. Christophers medal that I put on immediately. She did so good but was so worried that I wouldn’t like it.   I loved the gifts they were thoughtful and expressed her need to help take care of me and make things easier and at the same time they were things that I needed and wanted.  What can I say she loves me.

Anyway.  I am definetly going to UPMC for surgery and for a second opinion at Cleveland Clinic.  A couple of different family members have offered to help with bills like our house payment while I am off work.  What a blessing.  Not much else to say today so I will leave it at that.

Chiari Entry #3

Chiari Diary entry No. 3: Date 12/12/08

               Well it is Friday.  It snowed last night so there wasn’t any school and Maggie stayed home with me and Quen. Tristan went to his cousins house to spend the night and Jessi started work back at Dr. Meffert’s as a  Chiropractic Therapist.  Maggie and I put up the Family Room Christmas tree and I did a little work on the rest of the room also trying to finish the remodel.  I am forcing myself not to over do it as that seems to bring on the symptoms hot and heavy.

 Jessi went with me to my neuro appointment with Dr. Ahmad yesterday.  We think the world of him.  Dr. Ahmad gave us the results of my CINE MRI.  The CSF flow in the anterior portion is minimal.  It is being blocked by the 4-6mm herniation of my cerebellum.  Thus he is referring me to a Neurosurgeon.  He recommends that I have the surgery after the holidays.  I asked him about waiting 6 months and he advised against it.  He said that there is no reason to wait that long and continue as I am.  I suspect that he thinks I will get worse if I wait too long.  He also scheduled an MRI of my cervical spine to determine if I also have a syrngomyelia (cyst in spinal canal) and for a EMG of my left arm to check nerve damage and rule out Carpal Tunnel.  This will prevent me from having extra tests by the surgeoun when I go.

So I guess that means some research over the next few weeks of the doctor that he is suggesting and comparing that to the doctors that we have found.  We are looking at the University of Pittsburgh on his recommendation and The Chiari Institute of New York ( our find).

Jessi has been so great.  A few weeks ago she did have a little difficulty though.  I felt like she kept staring at me waiting for the back of my head to explode or something. LOL.   I think it was just worry and coming to grips with the possibility of surgery.  She is my rock, my warden and soon to be my nurse.  She has always been and will always be the Love Of My Life though.   What can I say other than that she obviously loves me as much or more than I love her. No doubts. No question about it.  She is so strong and doesn’t even realize it.  She is my Lois Lane, always there when Superman needs help because he over estimated something.

Maggie has also been great.  I mean she is only 8 years old.  We fixed breakfast together today and she helped me with Quen also.  She is worried also and doesn’t quite know how to express it.  So what if she has a blond moment.  She is great just like her mother.

Tristan seems to know that something is going on but not what it is.  I don’t think he is ready to know yet either.  He is 4 years old and just lost his Papa to Lung CA.  He is such a sweet kid.   He gets upset still thinking about that and he got upset the other day about Mama Faye because he knows she is sick.  He associates getting sick with Papa now.  He worries that sick means dying.  We have tried to explain that isn’t so, but once again he is only 4.

Quen is completely oblivious.  He is 2 years old.  What can I say. He is the devil incarnate here on Earth.  Not really but man he is rotten, conniving and yet so innocent and sweet.  You can see it in his grin and his eyes.  He is pretty loving toward everyone despite his devilshness though.

Well it is snowing again and I should probably close.  Yeah I’m worried.  A lot.  But I can’t let them see it.  You see I’m Superman.  I am suppose to take care of everyone. Not them taking care of me.  I do the rescueing around here.  Not them. This sucks so bad.

Chiari Entry No. 2

 

Second Chiari diary entry: Date Dec. 7, 2008

Well here I am again.  I have met several people on some of the Chiari Forums online and I have learned several things.  I am not alone being no. 1. There are other people out there with the same or worse problems than me.  I have emailed a very interesting lady with 8 kids 5 of which have Chiari Malformations.  She has been told that it is not hereditary.  Bull.  I am contemplating having the kids checked.  For now though I am going to watch them closely.

 A cousin of mine that is only 17 y/o has been having occipital headaches with no sign of a diagnosis.  She has had several tests including an MRI.  I wonder if it is being overlooked by a Doc that is not familiar.  I have sent them information and they have done some research themselves.  Ttey seem to think it is a possibility that she may have Chiari also.

 I am trying to plan for the future financial well being of the family in case of surgery as well.  Not much else to say tonight.  I’ll write more after my DR. appointment with DR. Ahmed Thursday.

May morning find me with a low pain level or at least a continued relief via caffeine.

Entry #1

This is my first diary entry post diagnosis.  This diary was started on Dec. 6th, 2008

This may get a little long so bare with me.  Here we go! 

 I began having occipital headaches about 14 weeks ago.  My Family Dr. told me they were  Tension Headaches (pretty common misdiagnosis).  Of Course I concurred with him due to the current stress of my Father in Law that was dying with Lung Cancer at that time.  He gave me Fiorecet (not sure about spelling) and a muscle relaxer and sent me on my way.  My Father in Law passed away shortly after this.  Of course niether the medicine nor the decreased stress changed my headache much.   A few weeks later I had a real thumper one morning after work and my vision became blurry so my wife insisted that I go to the ER. She has been so supportive of me. The ER visit was tough because I know everyone in every ER in my area.  So I quietly and secretly (yeah right) went and was then told it was a migraine ( misdiagnosis no. 2).  They shot me up with Toradol (which helped for the day) and referred me to a Neuro.

A week or so later I had  a consult with a neuro and an MRI scheduled.  When I went back for the follow up my Doc walked in and said my brain was too big for my head.  I laughed at him.  He then explained what he meant.  I heard about a third of what he said after that because I was so blown away.   I have been a neurotic researcher since then.  He tried me on Depakote just to rule out further that it was not migraines.  Trust me that was not a pleasent two weeks.  So many side effects and no relief.  

 In the last 14 weeks I have developed the following; Headache (of course), balance issues (I cannot pass a field sobriety test), tongue tied alot (almost never happend before) and new this past week is the numbness and tingling in my left hand.  I feel like I am falling apart.  I have found that Caffiene helps.  I read an article concerning it.  The caffiene constricts blood vessels therefore decreasing Intercranial pressure (ICP), thus the headache is liveable and the balance is better at times. Excedrin Migraine Rules.  I get a little wound up on it though.

 I have a CINE MRI scheduled for Monday and F/U for this Thursday.  I plan on my neuro some articles that I have found and listening quietly.  He found it quickly compared to alot of others that I have read about.  I hope that he is well researched and has some good suggestions

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.