Two years post onset of symptoms and what I think I know

Chiari Malformation is an unbelievable Neuro problem that only affects a few americans each year in comparison to the population.  However, it is a devastating problem for its victims.  I have talked to so many people over the last two years that are fellow Chiarians.  Some that have had results with treatment and others that have not.  Over all the recurring theme seems to be the difficulty in finding a Doctor that will listen and take things into consideration.  I ran into this problem myself.  This is my soap box.

Either the Doctor was uneducated as to what Chiari is or they were afraid to treat it.  That is right, they were afraid!  Why is this?  Well here are some of my ideas about that question.  One; most medical books used to teach our doctors only have a paragraph or two about Chiari.  See Merc Med Manual.  Two; Most doctors in this country are not in it for the patient, therefore they verse themselves in the every day treatment of every day medical problems that are common and easily treatable.  Three; There isn’t a pill to fix it or make the symptoms go away and there never will be.  Four;  There is a stigma of “the headache patient” that has been created in our society. (There is a lot that can be said about that one and I do not have the time nor the space here to address it properly).  Five;  Neurology is a specialty science and most neurologists don’t want to admit that they are not the person for this job. (This is another one that can be discussed for long periods). 

So what do we as Chiarians need?  I think that awareness is at the top of the list and there are some great folks out there that are doing just that.  Raising awareness through websites, walks and even going to the government and petitioning for more education.  I commend those folks and pray for their success.  Research is the next big one and a subject all of itself.  Also we need our doctors to start thinking of the patient again.  So many people are lawsuit happy that some doctors are so busy protecting themselves that they miss the big picture or are afraid to delve into the patient’s problems.  Or they think they know it all.  They want to write a script and send them to someone else.  Again this comes around to “the headache patient”. 

So for those out there that are looking for help I leave you with this.  Be persistent.  Research the condition and the doctors that treat it.  They are out there. Educate your own doctor as well, so that they can understand your needs, and if they don’t want to listen then find a new doctor.  Everyone can learn something new.   Early diagnosis and early treatment are key to life with Chiari. I am a testament to that as are many others.  I have found several articles by various doctors that express this opinion  (see article attatched to this link:  http://store.wisconsinmedicalsociety.org/_WMS/publications/wmj/issues/wmj_v101n8/Nash.pdf  ) and I for one will stand by it. How can I not,  just read my Chiari diary.  Also educate your loved ones as to your condition.  There are articles out there that can help with this.  Educate them so that they can understand your situation and empathise with you.  This can help them help you. (Attatched link to Chiari Handbook for  patients and their families:  http://www.asap.org/handbook.pdf )

One Year Post Decompression

Hello everyone.  I know that I haven’t posted anything new in a while but there are some really good reasons for my lack of attention to my blog.  I have been busy these last 6 months being myself again.  I do have some minor things that pop back up if I over do things.  But otherwise I feel great.  It has been such an amazing journey, and not one that I ever want to repeat of course.

Last year before surgery I was in constant pain from the skull base pressure headaches, my balance was off by a mile and  the left side of my face and my left hand were numb to any sensation .  In addition to all of this I developed central sleep apnea and I was mildly addicted to pain meds and lived in a fog.  There were other things also but these listed were my biggest problems.

So now I am back to wrestling the kids, teaching hands on rescue classes, fighting fire and being a full time paramedic.  We have started some home improvement projects that I am once again capable of doing.  Yeah it sounds like I am cured.  I’m not of course just a whole lot better off compared to a year ago.  I found this out the hard way of course.  We had a fire in a large multi floor home and short on man power.  After going through three airpacks of air and then working the outside of the structure for a bit I found my headache again.  Luckily I work with a good group that  made me sit out for a bit and even arranged for my meds to come to the scene.  The only bad thing they did was tell my wife on me. LOL.

Now that I have learned my limits I am doing well.  I know what I am capable of and just how far I can push before I put myself down for the count.  Yes I will probably push things in the future because that is me but I know just how far I can push now.  To all those out there with Chiari Malformations I hope and pray that you too can find at least this kind of result.  To those that have tried but still suffer I hope and pray that research can find new ways to help each and every one of us.

Take care and be safe.  Kyle

My Surgical Journey

Part 3  The day after surgery. 

I awoke from surgery in recovery confused and groggy.  There were nurses going back and forth and I could hear the couple next to me talking about their daughter that had surgery by Dr. Oldfield before me.  I remember the back of my head and neck hurting a lot.  However it was a different kind of pain compared to the Chiari Headache.  As I lay there I finally got my wits about me a little and I thought “Wow, why did I let Jessi talk me into this.  This sucks!”  I then cursed her for getting me into this.  Yeah, I am not proud of that but I won’t lie.  All I could think of at that point was that I was going to hurt like this forever and the headache was sure to come back.  My nurse realised that I was awake and checked me over and gave me pain meds.  Welcome Lala land followed.

The next time I woke up all I could think about was that I wanted my wife.  I needed my wife.  Where was my wife.  She would make things better.  She always did.  It was her nature and what she did for me.  Just to hear her voice was all I wanted.  I couldn’t see well because they had removed my contacts before surgery and that was frustrating.  I waved someone down and asked where my wife was.  They told me that she could come back and visit soon but they were very busy, it would be a few minutes.    I then began to think and realise that something felt different.  Not just the surgical pain but an awareness that I hadn’t had in a while.  I closed my eyes and took my finger and tried to touch my nose.  I did it on the first try.  I hadn’t done that in months.  I always missed because my coordination was so messed up.  This was awesome.  Wow!  Then there was more pain meds and welcome Lala land again.

The third time I woke up still in recovery Jessi was there beside me stroking my face and watching me sleep.  It was sooooo good to see her.  My angel was with me finally.  I wanted to talk to her and ask how things went but I wanted to show her how I could touch my nose too.  She was amazed when I did it for her.  Don’t get me wrong I still hurt but not like the first time that I woke up.  Jessi stayed with me for a while and talked to me till I fell back to Lala land with more pain meds. 

I awoke a while later and they were getting ready to move me to a room on the Neuro Step Down floor.  I thought I was going to be in ICU.  Could this be true.  I had developed a terrible migraine at this point though and I didn’t care where they put me, only that they made this migraine go away.  So more pain meds and a relatively regular room followed.  My new nurse was terrific.  I asked her for something to break the migraine because I could hardly think it hurt so bad.  Jessi had gone back to our room for some much needed rest and I was thankful that she was well taken care of by her mother and my best friend.  But wow I hurt.  My nurse gave me their Migraine Cocktail and I finally slept for about 5 hours straight restfully.

When I awakened this time it was the next morning and my head felt a lot better.  No migraine just the soreness and pain from surgery.  The assisting neurosurgeon showed up and evaluated me and told me how surgery went and said they would be back in later.   A nice lady came in and got me cleaned up and shaved and they got me a soft breakfast.  Jessi and her mom came in and then the wonderful nurse came and took out the Foley Catheter.  Wow was that a relief.  Physical Therapy dropped in a little after that with a walker and a plan of attack to get me up and walking.  I so wanted to get up and move but I was afraid of falling or busting something loose.

This is probably the coolest part of this time of my journey….. I walked down the hall with the walker but I walked a straight line.  No bumping into walls or swaying uncontrollably or veering off in the wrong direction.  This was the first time that I had walked half way normal in 3 months.  Jessi was standing behind me watching in awe.  Not much else I can say.  I was amazed myself when I realized what I had done.  WOW.  Yippee! Yeah!  Amazing!  I was ecstatic, amazed and thankful beyond belief.  I really don’t know how to say how this felt.  There just aren’t the words to express it.

At this point I was thrilled with the results of surgery.  There was none of the constant Chiari headache pressure.  I had at least 70% of my coordination and balance back.  Yes I hurt from the surgery and I could barely move my head but I knew that would get better with time and therapy.  I considered this a huge leap to mean that it was successful.

More later in part 4 of my Surgical journey.  This was just the beginning of my recovery and my road to wellness.

Six months Post Decompression

I am now a little over 6 months post decompression.  I am doing very well to say the least.  I am so thankful to have my life back.  I recently realized how symptomatic I was before surgery.  Too think that I actually wanted to put it off at one point.  Jessi (my beautiful wife)  and I were talking about some of the things that I was doing before surgery the other day.  I did not realize that I was dropping off mid-sentence and not finishing my thoughts.  I was not only losing words at that point but whole thoughts.  I do not remember reading anything about that kind of cognitive problems associated with Chiari.

I have recently found some new studies on neuro function that are pretty amazing.  Not only does the cerebellum control motor function but it also discerns auditory and focal processes.  That means that cognitive function can be drastically affected by Chiari.  I recently spoke to my old partner at work and thanked him graciously for carrying me.  If if weren’t for him I never would have been able to work as long as I did before surgery.  He is a great guy.

So now that I am better what does this mean for me?  Well I have been thinking about a lot of things lately.  Such as how long I can keep up being a paramedic?  Just because I am back to work and functioning 100 % now doesn’t mean that I can keep putting my body through 24 hour shifts, lifting on people and climbing upside down in cars.  Yes just recently i’ve been upside down in a car with a 70-year-old lady.  She is doing well though, but I digress.

I am considering getting either my Physician’s Assistant or my Nurse Practitioner and looking for a neuro that needs an experienced medical professional and Chiarian.  It will mean going back to school but my wife thinks I can do it.  She has been my rock, my love, my nurse and so much more through all of this.  I am so thankful for her.  We celebrated our 10 year anniversary this year.  It wasn’t a huge celebration but it was very special for us.

So take heart.  There is life with Chiari.  I know that I have been fortunate with my journey and it is not always this way.  But I wish all that suffer from this the best days possible and that soon there will be more that can be done for us and that we can all rest easier because of it.

And so I sign off today with this.  Take care and be safe.  Remember BIG FIRES START SMALL!

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.

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. 6^th, 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